# linzess (linaclotide) is here!



## annie7

it's here--hooray!!!

just got done talking to my pharmacy--cvs--and they told me they do have linzess in stock.

next i called my insurance company (an hmo) since of course i can't afford to pay out of pocket for it. they told me linaclotide is "not a covered service" --which i expected--they don't want to pay for anything---but if my gastro submits a prior authorization their review board will "consider it".

i have colonic inertia and linzess is my last hope. if it doesn't work, then it's surgery. i should tell that to the insurance company--lol. the med is a whole lot cheaper for them to pay for than surgery!

good luck everyone--hope you can all get your hands on it soon.


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## wigglesmom

Please let me know how it works for you once you start.


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## annie7

i will, Nicole, but it might be a while. i'm going to wait til my gastro's office calls with the samples. i have a much better chance of getting my insurance company to approve it if i first try the samples and then--if it works--i can prove to them it works for me. no way can i pay out of pocket for this.


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## annie7

here's a helpful link-- prescribing info for linzess:

http://www.frx.com/pi/LINZESS_pi.pdf


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## dt1070

I have been waiting!!!!! thank you for posting!!! Asking your doctor for the samples while he writes up an override is great. It will take them a bit to review and then at least you can see if it will even work. That's what I'm hoping for as well. I will be calling my GI tomorrow! I don't have any other options either and have been at my wits ends lately---good for about a month and now back to chaos. We have a PPO insurance so we'll see what they say. I'll keep in touch and hope you do the same!!!! GOOD LUCK!!!


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## annie7

oh yes--thanks--i'll be sure and post when my gastro finally gets the samples in.

and good luck to you as well! wishing you all the best.


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## wigglesmom

My doctor just called in Linzess for me. he says he doubts insurance will cover it and that without coverage, it's $900 a month! I hope it's covered. The Amitiza is making me feel all around awful, and it's not helping the constipation.


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## annie7

omg!! $900 a month--wow!

yes i do hope insurance covers it for you. at that price, i doubt very much if my insurance will cover it for me--mine just doesn't pay for expensive meds like that--especially new ones---unless of course they are for something that the insurance company considers truly vital and necessary for life. that's what the insurance agent told me when they cut me off zelnorm and refused to pay for it after six months. i tried to explain that zelnorm was necessary for my quality of life but they didn't care. appeals and claims did not help.

anyway--that's great your doc called it in for you! good for you! hope it works and that insurance covers it! good luck!.


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## wigglesmom

My insurance covered it! It's going to be $45 per month. Not bad, esp. considering that I;m spending well over $100 for everything else I buy for my condition. I'm going to review the side effects and pick up on Saturday morning. Do you know of anyone who has used it with success?


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## annie7

oh, Nicole--that's wonderful that your insurance paid for it!! you must have very good insurance-good for you! congratulations! how exciting!

no, i don't know anyone at all who has tried it yet--it's so new...

fingers crossed it works for you! good luck!


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## wigglesmom

Thanks, Annie. I am now wondering if I was prescribed the wrong dosage. I got the 145 mcg and wonder if I should have gotten the 290 mcg.
IBS C-145 mcg
CIC (chronic idiopathic constipation) 290 mcg
I'm not sure which I have since my issue is pelvic floor related. Any clue?

Is it called something else in Europe? Would love to look at reviews. I'll let you know how it goes once I start.


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## wigglesmom

I see that it's called Constella in Europe. I don't see any reviews for it under that name though.


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## annie7

HI Nicole. yes i know there are the two different doses but i've no idea which would be the right one for your situation. hopefully your doc will know. or just try one and if that doesn't work, try another..

there has been a linaclotide thread going over on the AGMD GI motility disorders support board. people there are trying to get it but so far no one has posted that they've tried it:

http://www.inspire.com/groups/agmd-gi-motility/discussion/linaclotide/

good luck! i'm so happy for you!


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## wigglesmom

Thanks, Annie. One person who did the trial posted their results, and that was good to read.


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## annie7

re linzess price--i live in michigan, just outside ann arbor. i asked cvs today about how much linzess would cost me if i have to pay out of pocket for it and the pharm tech said it would cost me $293 and some change for a thirty day supply--same price no matter which dose strength it is.

still waiting on the gastro's office to get their samples in. and still praying my hmo will decide to cover it if it works for me..


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## wigglesmom

I am hoping for you, and I am hoping that it helps me! I start tomorrow. I think the Amitiza did something awful to me. I was so sick this week. I had a horrible, painful blockage that took days to pass. I missed two days of work. I so badly want to live a normal life, but it's getting tough. I was doing pretty well until I started that stupid Amitiza.


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## annie7

so sorry you got so ill, Nicole.

yes i want so badly to live a normal life, too. and yes, it is hard.

good luck tomorrow!so glad you were able to get your script filled. i read the post of that person who did the trial and oh yes, it is encouraging!


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## stressedmess

I'm really excited to hear the reviews on Linaclotide. Please come back to the boards and let us know how its working for you







!

What person on inspired.com website posted about their trial results? because i'd love to start reading some reviews!


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## annie7

here's the post--under "linaclotide update": (maybe you've found it by now)

http://www.inspire.com/groups/agmd-gi-motility/discussion/linaclotide-update/?page=last#replies

there's some people over there trying it today so i'm sure they're be more reviews coming up.

sure wish my gastro would get his samples in soon. i just can't afford to pay out of pocket and he doesn't think my insurance will approve it unless i am successful with trying the samples first.frustrating...oh well--good opportunity to cultivate patience i guess--lol.


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## annie7

and also--on this board--spaceneedle participated in a clinical trial on linaclotide. he/she had good results--also encouraging. as are all the reports on the clinical trials and especially Dr Chey's study:
.

http://www.ibsgroup.org/forums/topic/114472-linaclotide-study-going-well/

http://health.usnews.com/health-news/news/articles/2012/09/18/new-drug-might-help-treat-irritable-bowel-syndrome


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## stressedmess

thanks so much for all of the links! i found both reviews really interesting! I like how they said its much better then amitiza because I used to take that a few months ago and the nausea effect was awful!! 
can't wait to hear more reviews, bring em onn haha


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## wigglesmom

I'm two days in on Linzess, and no side effects at all. Very different from Amitiza. Not sure if it's working yet, but I'm hopeful.


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## annie7

Nicole--that's so good to hear--that you're not having any bad side effects! i do hope it works for you!! wishing you all the best.


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## AIRPLANE

I will be curious to hear how this works, not only for constipation but for the pain part as well. From what I've read, it can improve pain and also mean more complete evacuation.

I've never considered myself to be IBS-C but that is what a doctor at Mayo 'theorized' I had after some tests earlier this year. I have what I consider to be IBS-A but she said that my diarrhea/loose stools were really my body's attempt to move things through. I will often start off having to strain, then things get very loose. I have incomplete evacuation- probably due to a rectocele and pelvic floor dysfunction, pelvic floor tension myalgia.

It is lousy to hear of the difficulty that patients are having getting the Linzess. From what I have read, it is intended for people with constipation in general as well as IBS-C. I suppose that the insurance companies will say that the drug is 'experimental' or 'unproven'- just like they did with me when I tried to get coverage for the Biofeedback training that was recommended.. The out-of-pocket cost was several thousand dollars- which I consider highway robbery since the success rates haven't been very impressive so I couldn't try it.

It seems downright cruel for there to be a product or therapy that might help long-suffering patients get back some quality-of-life but then deny them the opportunity to even try it. Also, if so few people can have access to something because they haven't won the lottery, how does a product prove itself as effective or not if so few people can even try it? Even with clinical trials, I figure that the only true test is for the general public to have access to it.

Anyway, I will be interested to hear how this works for those who are able to try it- not only for the constipation, but for the complete evacuation and the pain part of it. I will be going back to gastroenterology at Mayo next year for an unrelated issue found on a CT scan and if I get a chance to discuss my gastro issues, I might ask them about Linzess. They recommended Milk of Magnesia or Miralax, both of which I'd tried but the Miralax gave me cramps and a lot of gas and the Milk of Magnesia gave me full-out recurring diarrhea. So it's hard to say if Linzess would be OK for me but I'd give it a try if they agreed.


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## wigglesmom

Airplane-I would love to go to the Mayo Clinic as no one else seems able to help me. How is it that you got a referral there?
Three days on Linzess and no changes so far. No side effects either though.
I wont be able to tell you about pain as I rarely experience gut pain. Almost everything I feel manifests as head pain instead. When I have to go or get a blockage, I feel intense pain over my eyes. Only rarely (though it did happen last week) is the blockage so bad that I feel as if I am being stabbed in my side. That, I believe resulted in the few days that I was taking Amitiza which did not agree with me at all!


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## annie7

nicole--do you still have a blockage--lots of backed up stool? that may be why linzess isn't working for you.

from what i've read and from what other people's docs have said--that if you're backed up it's a good idea to do a clean out before trying a new med like linzess--or amitiza, resolor or (back in the day) zelnorm--because these drugs are not laxatives--they work more like bowel regulators--and they work much better if you're not already backed up.


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## AIRPLANE

Nicole,

I'm within driving distance of Mayo- about 75-80 miles. My primary doctor agreed to refer me after the gastroenterologist who did my colonoscopy earlier this year didn't even have me back for a follow-up. I had thought that the colonoscopy would have been only the beginning with him but instead all I got from him was a letter about the colonoscopy results- no chance to discuss anything with him. With doctors who are like that my assumption is simply that they aren't interested in helping you enough to work with you for any length of time which is too bad because he is the only gastroenterologist in my local area. He seemed like a pretty nice person at my one and only appointment with him.

Anyway, my primary doctor agreed that he should have spent more time with me so that's when we decided on going to Mayo. I suggested that I see a Dr. Adil Bharucha who supposedly is knowledgeable about pelvic floor issues. However, I found out that you don't necessarily spend much time with the Dr. that you think you will see. Instead, I ended up seeing what must have been a young intern whose English wasn't the best. When I pointed out to her that the defecography test that I'd had there 5 years earlier did show a rectocele, she just giggled and said that a rectocele was an enlargement of the rectum but didn't want to discuss it any further. I almost did have surgery for it 5 years earlier when I saw a urogynecologist- a Dr. Klingele- but again, he spent very little time with me and seemed to be in a hurry and I spent most of my time with what I again thought was an intern although she was very pleasant. Since Dr. Klingele would have been the one to do the surgery, I wasn't comfortable with it since he didn't spend much time with me. Then I saw a gastroenterologist- can't remember his name- who ordered the defecography (which confirmed the rectocele that a previous gynecologist of mine had noticed) and anal manometry. That was the first time I was scheduled for the Biofeedback training which I found out, after I got home, that my insurance wouldn't cover so I couldn't do it. Well, as I mentioned, they did the same thing to me again- recommending both Biofeedback for pelvic floor tension myalgia and another course of it for nonrelaxing puborectalis muscles- not waiting to see if it was even an option for me in which case I feel they should have been willing to consider other things- like possible surgery for the rectocele. Also, I believe that Dr. Bharucha had a lot to do with developing that Biofeedback program which I should have thought of before I chose him. Just like the urologist I saw who recommended the Interstim after spending about 5 minutes with me- they seem eager to push their money-making ideas on you whether it is right and/or affordable for you or not. There is profit to be made from our misery!

When I went to Mayo 5 years ago, I didn't need a referral since I was already an established patient. I'd been there several years earlier to gynecology looking for help with pelvic pain (with no success) and also I had to go there to have my right adrenal gland removed since that was a very specialized surgery that wasn't widely available. This time though I had to be referred because their current policy is that if you haven't gone there in 5 years then you need to be referred.

Mayo does have a lot of tests available that other places don't. However, I had to pay quite a bit for them because apparently my insurance doesn't consider them medically necessary. I spent about $2,000.00 out-of-pocket this time around. I had the radioactive breakfast transit test, a SIBO breath test, a CT scan that showed something in my left chest that they want to follow up on, and some neurological testing. However, I have nothing to show for it since they again sent me away with recommendations that I couldn't use. I suppose that if you get or choose the right doctor that you might get better help than I did. I have heard a lot of good things about a Dr. Camilleri over on the AGMD board but not sure what his exact specialties are.

Since you are on the east coast you'd also have to consider travel and lodging. Have you ever heard of a Dr. Albena Halpert? I think she is a gastroenterologist in Boston. I have come across her name- can't remember where. She might be someone to check out if you aren't familiar with her. But I have found that even when you see a Dr. who has written impressive-sounding articles about stuff that that doesn't mean they are a good Dr. when it comes to spending time with you and doing their best to help you.

How long do you think you will experiment with the Linzess? I like the idea of a bowel 'regulator'- something that supposedly normalizes things without making you swing in one direction or the other. I currently am avoiding coffee because I read on another site that coffee contains something (it's not the caffeine) that interferes with the digestive rhythm and is bad for both constipation and diarrhea. So far I haven't noticed any improvement but will give it a bit more time though it is hard- tea just isn't the same as coffee! I was hoping that fiber would help but it constipates me- it seems like the fiber goes one way and all the water goes to my bladder, no matter how much of it I drink.


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## wigglesmom

Annie-The blockage was definitely cleared before I started the Linzess. About 4 hours of enemas and bathroom time took care of that.

Airplane-What great information. Thanks for sharing it. I also have pelvic floor issues and believe this to be my main problem. I did physical therapy and biofeedback over the summer, and it did not help one bit.
Have the doctors decided what they will do about your pelvic floor problems? I can share with you the exercises the therapist had me do. I still do them. The biofeedback was relatively pointless, and most of the time it read that my muscles already were relaxed. the therapist believed it to be a misread though as she said that they felt very tight.
As for the Linzess, I'm not noticing any difference yet, and it's been three days. I'm not giving up as there are no side effects. I might ask my doctor for the higher dose those as he put me on the 145 mcg. and not the 290.
Next steps are an MRI next week (doctor says what I am experiencing could be caused by a rare spinal tumor) and manometry. Depending on what happens, I'll try to get a referral to the doctor you mentioned in Boston after test results are in.


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## annie7

Nicole--yes--could you please share the exercises you do? i'd appreciate that very much. my gastro told me i could try biofeedback and PT if i wanted to but my insurance will not cover it. thanks!

sorry linzess isn't working but yes, try the 290 dose.

that's a great recommendation Airplane gave you about Dr. Halpert. i've read about her--- she sounds very knowledgeable!

good luck with your upcoming tests.

wishing you all the best.


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## wigglesmom

Annie Can you message me your address, and I will photocopy and send you the exercise sheet?


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## annie7

will do--thanks ever so much! i sure do appreciate it.


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## dt1070

ok---I have it..145 mg and I take it once a day- before breakfast.. I started last Friday. My insurance covered it but I have a $50copay. It's been a week but I don't see a difference. The first and second day I did. Now, nothing. I'm still taking miralax with it, per my GI...He told me take both for a week and then stop the miralax. I'm nervous to not take the miralax. I still bloat when I eat. I actually upped my miralax because I felt constipated. I'm hoping this just needs time to work. I haven't read anyone else taking this and their experience. Don't know what to tell ya.


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## dt1070

@ Airplane, Is Dr Halpert at the Beth Israel Deaconess? I see Dr Anastopolis at the BI...they have a whole gastro clinic... but I was his first patient he prescribed this too...I'll see what he recommends


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## annie7

dt- maybe the 290 dose will work better for you. that's what i think i'm going to need.

have you had any tests to see if maybe it's not ibs-c that you have but instead something else like slow transit constipation/colonic inertia (sitz marker test) and/or pelvic floor problems(defogram) or a long or twisted colon (colonoscopy). there's a different treatment protocol for these things--different than for ibs-c.

good luck--hope you can find some relief.


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## wigglesmom

I've been on since Saturday and do not see a difference either. For my next round, I'll ask for the 290. I'm thinking though that this is all linked to pelvic floor issues in my case though and that this medication might not provide what I need. I was hoping that it could replace the massive number of other pills I take nightly so that I can have a bowel movement every morning. That does not seem to be the case.


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## AIRPLANE

DT,

I don't know what clinic Dr. Halpert works at- you'd have to do some googling. I know that sometimes it can be difficult to find out where a Dr. is this way though because often, if a Dr has changed locations, the old locations sometimes still show up. Also, some doctors may work at more than one location.

Nicole,

I doubt that Mayo will have any other ideas for my pelvic floor issues. I wish that I had checked with my insurance before my last appointment there so I could have told them that once again, just like 5 years earlier, my insurance would not cover their physical therapy. I could have easily done so on my cell phone between appointments but as they say, hindsight is 20-20! But I think that they are eager to push their PT since it obviously must be a big money-maker for them. It is interesting that 5 years ago I would have had to wait about 4 months to get in. This time I could have gotten in within a month so that tells me that they must not be getting as many patients into the PT as they were before which I assume is due to a combination of lack of coverage/affordability and word-of-mouth that their therapy hasn't proven to be as effective as they'd like us to believe.

I have gone to a local PT who deals with the pelvic floor as well as a medically-oriented massage therapist. The PT has given me some stretching exercises to do as well. But they don't seem to help or even when they do seem to loosen things up I always end up feeling tight again. And nothing has touched that left-side bulge which I assume is the rectocele that doctors seem to want to downplay. Although I'm not eager for surgery due to my experiences with past surgeries which only seemed to cause more problems (like vulvodynia and a possible fistula) which nobody could help me with either.

The best thing for me would be to retire from my job but that's not an option. It is much easier to deal with when I'm at home and at least when I can sleep as much as I need and function on my own schedule I can have days where things seem to be more manageable!


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## wigglesmom

Airplane-Your thoughts about working are identical to mine. I am a teacher and need to be at work by 7 am. In order to do that, I get up at 5:15 to give myself an hour in the bathroom. Not only is that not long enough, I am also not ready to go that early. When I am able to wake up naturally, I have so much more success in the bathroom. Plus, when I am off during the summer, I am rarely sick because I wake up on my own time and can spend the 90-120 min. in the bathroom that I need to. I have applied for disability but am not sure I will get it.
My issue is that once I am at work and have to go to the bathroom, I can't as I need lots of "props" and time to do so. It's something that can only happen in my home. So, I struggle to get it all out before leaving in the morning, but usually, I can't.
Here is one thing that is working though. I applied for FMLA and got it. This means that I can take up to 12 weeks off intermittently without the fear of losing my job. These days are not paid, but I am thrilled to have this flexibility. So, what I a currently doing is going to work each week until I know that another day would likely leave my with a huge mess and then taking a day off. It usually happens around Weds. or Thurs. of each week. It's not the best plan in the world, but it's working for the time being. Maybe you can look into getting FMLA?


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## AIRPLANE

Nicole,

It's great that you got FMLA- at least that should take some of the pressure off.

I gave up on doctors as far as getting that type of help. Back when my issues started in 1984 I had severe pelvic pain and spasms all of the time and could get no doctor to help me as far as my job was concerned. They would either laugh or get very angry when I'd try to convince them it was justified. I think that my only chance would be through a psychologist who was knowledgeable about things like IBS and other gastro issues and I'm not sure I'd be able to find one. Otherwise, they would just probably insist that the problems at work and elsewhere were in your head and wouldn't even consider that what you were telling them was true and how severely it impacted your quality-of-life. The Mayo Dr. didn't seem to be interested in the negative, life-altering effect that this has had on me for about 28 years now either.

I got a letter from Mayo the other day saying that they'd tried to contact me about the physical therapy which wasn't true- they hadn't called. I had already spoken with them last summer when I told them my insurance wouldn't cover it. So I called them and told them that it wasn't covered by my insurance and the PT asked if I'd tried sending a letter of necessity to my insurance but that would have to be done through a doctor and none of them offered to do it. But I'm not sure I'd want to push it anyway since it doesn't sound like it works for many patients and the impression I got from the doctor there was that if the therapy doesn't work they want to blame the patient for not doing their part rather than accepting that it simply didn't work.

Anyway, as far as FMLA, where I work there has been a lot of downsizing and calling in sick too often wouldn't go over very well with my co-workers. I have a hostile enough work environment. Hopefully I'll be able to retire in a little over two years but even then I'll probably have to find another job to supplement it. And of course, I'd be at the bottom of the totem pole in a new job and who knows what kind of schedule I'd end up with. Still, if I could just work part-time I'd assume I'd be able to manage better than I am now and of course I could always change jobs.My current schedule is awful- I start at 5:15 AM some days, 6:30 AM other days and I have a fairly long commute. Plus they now have me doing heavy lifting the first 1-2 hours which doesn't help matters either.

I was wondering if you ever soaked in hot baths to try and loosen things up. Unfortunately, the tub in our house isn't the best and my offer to pay for a more comfortable, deeper one with more features was resisted by my mother (who can't even get into it at her age so it would benefit her as well!) I know that I have read articles where it was suggested that you soak in a hot tub regularly to help loosen things up but my only current option is the shower which of course isn't the same!

Yes, it is impossible to take care of things once you leave the house for work. Sometimes I will need to go several times, each time with increasing urgency. And I can't always just up and go right when I feel the need. And I also need privacy, as well as time which just isn''t the case when you're on the job.Most doctors don't understand this- it may be doable for someone with a better functioning system but when things don't work right it's a different situation. I remember one gastro I went to several years ago said that all I had to do was go into the biff, sit down and go! Like what problem could I possibly have with doing that?!


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## annie7

..." go into the biff, sit down and go..." omg--i do so wish it were that easy!! just like normal people can do--but for us the impossible dream. we certainly wouldn't have to be at the gastro's office then, would we..what a helpful (NOT!!!) remark on the part of that gastro.

i've read that, too, about a hot bath loosening things up. sounds like good advice, if it's do-able.


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## annie7

..would a sitting on a heating pad work, i wonder, if a hot bath wasn't do-able? using one of those moist heat-type heating pads with the sponge insert or else a moist towel..


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## wigglesmom

Airplane, I don't know how you do it-having to be at work by 5:15. On the PT-not sure what to say. It did not help me at all, but that doesn't mean that it wont help you. I also cannot take baths as we only have a stall shower in our house. I periodically use a heating pad, sometimes with magnesium oil. I used to do castor oil packs with a heating pad. Maybe I should go back to that. I'm not sure that benefited me either though. There is just so much to do and keep track of in terms of managing this. It could easily take over my entire life and time.


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## dt1070

@ Annie7...sitz marker came back neg--well all clear, not a problem...colonoscopy was clear...GI didn't feel it necessary at the time to do a defagram...I'm on day 9 of linzess and its still the couple of hours of diahreah(sp?)sorry for spelling errors, a bit tired... I have had headaches everyday since starting this med. The bloating seems to have gone down some in the past 2 days. I'm giving it a few more days and then contacting my GI to get his thoughts. I'm up at 5-5:30 every morning too ----b-room is right outside my office door...


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## annie7

sounds like it isn't working as well as you'd hoped--that's disappointing.

hopefully your gastro will have some answers--possibly a way to tweak it. good luck.


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## wigglesmom

@dt1070-I too am on Linzess. I'm not sure that I've noticed it helping. I've been on for 9 days now. I have no side effects whatsoever. I wonder if switching to the higher dosage might work. Since your Sitz came back normal, is it to be assumed that your issue is pelvic floor dysenergia?


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## Rose

Nicole,

This might sound like silly question, but wouldn't taking two of the pills you have give you the higher dosage that might help? I have been waiting for this drug to be available, but I am getting discouraged by the results those of you who are taking it are saying. According to all the literature I have read on the drug, the clinical trials reported a noticable difference in one or two days and some of you have been on it over a week with no noticable difference. Very disheartening. (


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## dt1070

Nicole,

I have only been diag with IBS-cic....

Yesterday I didn't take Linzess and didn't go...today I took it and didn't really go...so I'm not sure what's happening. I was taking it with miralax and stopped-so I'm not sure if the effects of the miralax have worn off...we'll see...


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## randomguy

Does anyone know if Linaclotide (Linzess or alternative brand name) is available in Canada, or will be anytime soon?

Desperate to try anything new in market.


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## annie7

Randomguy--you could try calling the manufacturer and asking that question--i know people who've called them with various questions about linzess so they do answer their phones. there are some phone numbers listed at the bottom of this article.

it's been approved in europe and now they're working on development in asian countries so you'd think they'd be working on development in canada too.

http://ironwoodpharma.com/contactus.php

http://www.canadianbusiness.com/associated-press/ironwood-and-forest-announce-u-s-availability-of-linzess-linaclotide/

good luck.

or--another thought--if you live close to the usa/canada border you could maybe try having your doc write you a script for it and then taking it across the border to get filled and bring it back home--provided canadian customs allows that of course--check online for customs regs. last i checked usa customs allows that sort of thing as long as it's small (i think 90 day) amounts for personal use only. or maybe your doc could get it for you. i remember people doing that with zelnorm--both when it first came out (was first available only in switzerland so people got it from there) and then later when it was taken off the usa market people got it from mexico where it is still available from medsmex.

and maybe there are online pharms you can get it from too. i know here in the usa we can get prucalopride (not usa-fda approved) from canbadadrugs.com as long as our doc has provided a script for it.

again--good luck!


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## wigglesmom

Rose-I have considered taking two pills, but that will mean running out of my prescription sooner. I don't want that to leave me with no pills at the end of a month. I call the doctor today to see if he can up the dose. Lizness is $45 per month for me regardless of the dosage. Not cheap, but I am thankful it's partially covered by insurance.


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## trapped inside

Thought I'd post with an update of my experience thus far with Lizness:

I've taken it for three days (the 290 mcg dose, which is suggested for IBS-C), and I've had disappointing results. I take the pill in the AM, 30 minutes before eating a meal.

Days 1,2,3: I have had watery diarrhea, and no passage of any solid stool. This diarrhea comes usually in the morning (3 or 4 trips to the bathroom) and nothing throughout the rest of the day. I must say I am also taking the osmotic laxative, Miralax, which is possibly interfering with the medication's efficacy.

I am paying $249 a month for Lizness, since it's not covered by insurance. I am hoping the first week of diarrhea indicates my body getting used to this new drug. I hope it works soon!

Please keep posting anyone who has tried the drug!


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## wigglesmom

I've now been on 290 mcg (up from 145 mcg) for three days. No change yet. I'll keep updating though. No diarrhea, just the same as always.

What helps more is the Chinese diet tea I take (senna free), magnesium, flax, magnesium oil sprayed on tum with heating pad, occasional mag citrate drink.


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## dt1070

@ nicole

you upgraded! So no BM's? what is happening? why did they up the dose---what was your GI's rationale? just curious...


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## wigglesmom

I just called the doctor's office and asked the secretary if they could up it to 290 mcg. They called it in to the pharmacy within a couple hours. That was that. Still no difference of the 290 though. Do you feel it's helping you?


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## dt1070

Im a bit afraid to try the 290...I do have BM but only during 1-2 hours after taking the drug. So yes, that is good better than taking the miralax all day...the side effects are a problem...it really is a toss up.


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## wigglesmom

I am now wondering if I should be taking this a couple hours before I need to go to the bathroom. I wake up at 5:15 and need to go then to be at work on time. That would mean waking up at 3 to take it. Worth a shot, I guess. What side effects do you have? I have none. Yesterday, I was extremely nauseous, but that was a first on this medication, so I'm pretty sure it was something else that was causing it.


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## dt1070

I had nausea the first few days and now it's once in awhile or if I've skipped a day. I do get headaches that last all day---the first few days it was more like a migraine all day...again if I skip a day---I have the migraine. I'm up the same time as you. M-F I take it at work when I get there --the b-rooms are close and I can still get some work done. It's the weekends I have trouble with---can't leave the house for a couple of hours after taking it---that's the inconvenient part. I guess I could do the same---but getting up at 5 on the weekends or earlier than that if I'm travelling that day for sports doesn't really sound great, lol...

you're lucky no side effects! It's such a wide range of reviews for this drug---you have no symptoms and it produces BMs..I have BMs with side effects and I've talked with others that have lots of side effects and very little BMs.

Good luck ---let me know how that works for you!


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## Rose

*Wow, those of you on the drug seem to be having very disappointing results. I had so much been looking forward to this drug to be available, but now I'm not sure if I should even bother trying it or not. I wish somebody would post who is happy with the drug. All the clinical trial results sounded so promising. I wouldn't mind but it is so expensive. My insurance company covers some of the cost. I can get 3 months (90) pills for $100 out of pocket cost to me. I have an appointment with my GI doctor on Jan. 17, so I guess I will talk it over with her. My IBS C has gotten so much worse. I never used to have pain, but lately even if I have a BM, I'm still in pain most of the time.*

*The only thing that relieves the pain is laying down. *

*Rose*


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## Kathleen M.

A couple things to consider when making the decision.

1. Drugs tend to either work nor not. For those that it worked in the clinical trials I'm sure they data is accurate as to how well it worked. But even if were amazing and works for 75% of people, that doesn't mean 100% of the people get 75% better. That means that 25% of the people had little/no benefit and 75% of people did well.

2. Generally the people who aren't doing well are a lot more likely to post than people who may have never needed a support group and find this drug is the one for them on the first shot. So you will usually get a lot more negative reviews of things to begin with. Also support groups tend to accumulate people who have a hard time finding anything that works so I'd suspect we'll have a higher than usual "that was a bust" reviews than you might find in the general public.


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## annie7

Kathleen--thanks so much for your input. what you said makes a great deal of sense--as always 

Rose--so sorry about all your pain. about Linzess--i feel the same way, actually, about linzess and all the negative reviews. i'm still waiting for my gastro's office to get samples in for me to try, since i can't afford to pay out of pocket for it and my trying it and being (fingers crossed) successful with it is the best way to get my miserly insurance company to pay for it.

i have slow transit constipation (colonic inertia) a rectocele and a twisted colon. amitiza did not work at all for me and even zelnorm did not work well. so i'm definitely one of those tough cases like Kathleen mentioned. but i do plan to try linzess anyway because at this point if linzess doesn't work, it's surgery time. and actually, at this point, i'm thinking surgery, even though possibly difficult and problematic, would be a relief. i have a gastro appointment jan 8 and hopefully he will have samples in by then. i plan to also see about getting a referral to a surgeon.

hope linzess works for you, Rose.


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## dt1070

Rose, yes this is a small audience of users so the negative will seem overwhelming. You shouldn't let that sway you. Your experiences might be different. My side effects aren't the same as others. It may work for you. Just know that if you are having difficulties there are always people here to vent or get new coping ideas from. Don't use the posts like a review of a hotel or a recipe. Talk to your doctor and decide what's best for you.


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## wigglesmom

Hi all-I just called to renew my Linzess (my GI upped my dosage to 290 mcg) and was told that my insurance co. will no longer cover this drug for me due to it being new. It's odd b/c they covered the first bottle I got. That's disappointing, but I'd be MUCH more upset if it actually worked. Like I said, I had no side effects from it, but it also had no benefits as far as I could tell either. Even when taking two 145 mcg. daily, I felt no different than I normally do. I'm posting this to alert people who are on it that your insurance companies might change their minds as well. How unfortunate.


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## annie7

thanks, Nicole, for the heads-up. so sorry linzess didn't work for you, even with the higher dose.

how disappointing. my insurance company did that to me with zelnorm. they did cover it for the first six months and then cut me off completely and forever. i protested, filed claims, my doc filed claims--did no good. the insurance company told me i could just take laxatives daily instead.

but despite this previous experience of mine, i still feel it's a good idea--if one wants-- to protest and file a claim against an insurance company decision. never lose hope--you can sometimes succeed--it does happen. i've done that. and then of course it's definitely well worth the trouble.


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## Kathleen M.

It may be worth checking with manufacturers if insurance won't cover something as many of them have a reduced fee program if you can't afford the drug.


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## wigglesmom

Thanks to both of you. I will call my insurance today and possibly call the manufacturer. I'd be really on top of this if I were seeing benefits, but I really wasn't noticing much of a change being on the medication.


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## dt1070

Nicole---you might have answered this before but would your doctor give you the samples for another month or so----that's if you wanted to continue with it. I know my GI was willing to do that if my insurance didn't cover it and he would try appealling to them. Also---I did take my med late yesterday afternoon---I forgot it at home and didn't want to skip a day---it did give me a BM with no headaches or nausea, lots of bloating and belching though. My point to you though is maybe you could take the med with a small piece of toast within 20 minutes of eating----it might help with the nausea...

I'm back to constipated today with huge bloating and had had headaches/migraines for a few days..I don't know if it's stopped working for me---or if my hormones are getting in the way. I wish there was a manual for all this! I feel like I'm going to be an addict---taking the linzess, taking something to control the nausea and taking something to maybe control the bloat feeling ...hahhaaaa...


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## wigglesmom

DT-I really don't think that the Linzess is worth fighting for in my case. Even when on it yesterday (my last dose), I was very sick. I did call my doctor, and he does not have samples.

I have a question for you-you mention headaches. This is my main symptom in terms of constipation. When I cannot go to the bathroom fully, I get an awful pain over my eye. It seems like your head is affected too. Has anyone ever been able to explain the cause to you? Every doctor I tell cannot seem to come up with a reason for it. It's interesting because once I can get all of the stool out, the head pain immediately dissipates.

If you are struggling with bloating, I highly recommend Gas & Bloating by Gaia Herbs.


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## dt1070

Nicole-- I don't blame you--I'm on the fence here if I should continue. I do get headaches occasionally during my monthly cycle. Some months its days of migraines, other times just a mild headache. I have noticed that when what I call a bad IBS cycle--I get a lot more headaches/migraines. No doctor really has said anything about it. Years ago I had taken furnol(?) but it made me sleepy. I really hate taking any medicines so Ijust deal and take tylenol or ibuprofen when I get migraines to get me by till bed. Also during my bad cycle I get a lot more acne and my skin is very dry, itchy...Some of this I think is maybe hormonal and perimenopause maybe but it's been a few years so I donno. It just sucks somedays. I had lost 15 lbs and now have gained it back so I feel like a big blob! Taking the Linzess I don't dare go anywhere for a few hours with the diarrhea --so no yoga class or treadmill...oh well I guess...

I will try the herbs---I was using papaya digestive enzymes with a meal and it helped a little but then it didn't. It seems that my body gets "immune" to using products. Not sure why...does that happen to you? I'm tempted to try the low dose of Amitizia and see what happens---the 24mg gave me headaches, stomach pains, nausea just like the Linzess but no pains...HAHAAAA I feel like I'm always complaining and never happy about my IBS....2013 will be better!!!!


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## wigglesmom

My current system for gas and bloating is excellent. I take Enzymedica Digest Gold when I eat. If I am eating beans or cabbage, i also take a couple Yes to Beans pills. The Gaia Gas & Bloating pulls really help when I do get gassy. I also like to follow heavy meals with the digestif Fernet Branca.

Also, the Chinese diet tea that I take always makes me go to the bathroom. It's been a lifesaver for me.

I don't think my headaches are related to my cycles. I've had them for 17 years now, and they happen at all different times of the month. It is particularly difficult to have bowel movements around the time of my period though.


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## dt1070

Just as an update---I just got off the phone with my GI, he wants me to take Linzess with some food for a week and then update him. The hope is the headaches/migraines, nausea will subside.. I guess I will find out!

@ Nicole---yeah, I get constipated a few days before my period but then get diarrhea during or at the end of my period which then causes me to get constipated again. Crazy. I'm looking into taking some vitamins for the hormones though. I read that hormones can cause the constipation/diarreah in perimenopausal/menopausal women. I think it said B12, selenium and something else....can't hurt..


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## RYANBOZ7

Damn,I was really hoping to hear positive results from this drug.I went to a naturopathic doc and she has helped me alot,she took my blood type and had me eat foods that were on a list and stay away from another list of foods like red meat,pork,eggs,wheat etc.,which I am allergic to.I have been doing much better but was hoping this drug would give me the best results yet.....


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## dt1070

@ ryanboz7 It may work for you. Not sure what your issues are but you really should have you're own experience with the drug. So far I am the only person that has headaches/migraines and nausea that I've talked with. What is your issue? I mean if the naturopathic doc seems to get things working for you... how does that work--a naturopathic? I've never been or know anyone who has?


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## stressedmess

I just took Linzess for the first time today (290 dose) and I had no side effects. However, I took it around 10:30 am and about a half hour after eating lunch at 1 o'clock I had very mild cramping and had to use the bathroom. I went six times (five minute break between each movement). All water, nothing solid. Now it stopped but if I go and drink some water it will trigger another small movement! I think it's a really stronge dose for me. I'm going to take it before I fall asleep tonight instead of in the morning... if that doesn't help then I will try the lower dose.


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## ellenk89

I just started Linzess yesterday. It is a last resort for me. I've been on Amitiza but I seriously think it makes my spasms and constipation worse! I'm really scared to find out the actual cost of this med but if the pain and all goes away then it might be worth it


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## PattyCakeBake

Hi everyone, this is my first post









I've been dealing with severe constipation, bloating, discomfort, for about three years now, my GI is leaning towards me having IBS-C, we will be doing more testing after my two weeks on Linzess...

I've been taking it for 5 days now in the a.m. a half hour before i eat (the 290 dosage) and...my bloating is a bit better but i've had only had 2 very small very watery bm's since taking it. I'm not experiencing the frequency like other ppl have reported. I don't know if this is because the drug isn't working for me or if i may have other issues bsesides ibc-c

anyone have a similar reaction to linzess?


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## CeciliaM43

I just found this forum this morning. It has interested me what all of you have been going through as far as the cost and your reactions to Linzess.

My history is that in the 70's I had a Juneo-ileal bypass. That was the weight lost surgery before the "stomach stapling" and before the Roux-en-y Gastric By-pass. In 2001 I consulted a surgeon in my city in Mid-Illinois to have my JI bypass reversed. With the JI I had constant diarrhea but the strange thing is that I would still have frequent constipation and would have to take mega doses of laxatives to have BM. The surgeon did the conversion to the Roux-en-y Gastric By Pass Dec 2001.

Since then I have had constant Chronic Constipation. The only things the doctors have done is order Miralax, Milk of Magnesia and Benefiber. At first I would get a little relief but not much. Three years ago I had a bowel obstruction that required surgery and being in the hospital for 13 days. Since then and even before the surgery when I complained of the constipation both the surgeon and PCP just tell me to increase my dosage of Miralax which by now does nothing but causes me to gag when I take it. A little over a year ago I had a colonoscopy which did not show anything except the lining of the intestine did have the tell tale signs of heavy laxative use.

With my constipation, there are times the bloating and the back up is so bad I am in constant pain. The area that bloats so bad is the upper abdominal area just under the diaphram and sometimes causes shortness of breath. I was certain I was developing another bowel obstruction but everyone was saying no -- even the Gastroenterologist to which my PCP finally sent me to visit for a consult.

Last Friday (Jan 18, 2013) I had an EGD. When the Doc (not the one I saw in the office but another one in the group) came to talk to me and hubby, the first thing out of his mouth was about Nausea and Vomiting which I do not have. So my husband set him straight that it is not N/V but the chronic constipation. At that time he told us that I had a slight twist in my esophagus and that the nerves that cause Peristalsis (the wave motion to push food down) was not working right. Therefore he told us to go by the office as we left since the office was less than a block away and pick up a sample 30 day supply of Linzess.

I am happy to report that so far it is seeming to work for me. I am having BMs on my own without having to use suppositories or enemas or the Miralax.

I still do not have any idea how much this medicine is going to cost me. Hopefully it will be just the $40 per month or $80 for a 3 month supply. I am on a medicare advantage program so we will see.

Today is my 6th day on the medicine so hopefully it continues to work. The doc had also wanted me to have Domperidome but that has to be ordered from Canada or New Zealand and my insurance will not pay for that. So I do not know yet if I am going to get that med or not.

Good luck to all of you.


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## blocked713

Rose said:


> According to all the literature I have read on the drug, the clinical trials reported a noticable difference in one or two days and some of you have been on it over a week with no noticable difference. Very disheartening.
> 
> 
> 
> 
> 
> 
> 
> (


Rose,

It's disheartening indeed. I've been putting up with this since 2005 and thought Amitiza would be my salvo. Nope - dizzy, nauseated and no results. Then I found advance news of Linzess, and waited on my GP's doorstep, figuratively, until it was approved. I have no patience and cannot go the recommended two weeks for it to work, and so after two days - nothing. I gave up, and am back on Dulcolax.

Add to that the fact that Linzess is unproven as to deadly side effects (one never knows do one? bad enough I'm waiting for Dulcolax to kill me), and disheartened is the very word for the medicines for CIC. Like Viagra, I want a pill that will work out of the box and not kill me down the road.

Is that too much to ask? Apparently.


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## Michelle A

Nicole Graziano said:


> My doctor just called in Linzess for me. he says he doubts insurance will cover it and that without coverage, it's $900 a month! I hope it's covered. The Amitiza is making me feel all around awful, and it's not helping the constipation.


I've been taking Amitiza for 9 months and it does not help. It makes me feel awful and I still have constipation, I also have to take a diuretic for the water weight and 8 - 16 oz of golyhtly just to deal with the issue. Have you tried the Linzess yet? I got samples and so far the first day was diarrhea. I have the higher dose. My doctor said if it doesn't work in 2 weeks it won't work at all. I'll keep my fingers crossed.


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## Mary in Bethlehem

I just found this forum today & hope to learn from you all. Since August I have been unable to have a bowel movement without taking Dulcolax, the harsh version. I started on Linzess Thursday & it hasn't done anything for me so far. I am now on a reduced work schedule because of this problem & take 3 tablets of Dulcolax every few days. Yesterday I took that & it worked predictably today (leaves me feeling like a truck's driven through my abdomen or something). I'll take Linzess tomorrow & see what happens. My gastroenterologist gave me 16 days' worth of samples. I'm sorry you all are suffering, but I'm glad I've found this group & am trying to be positive about the new drug. I'm also getting my blood tested for thyroid production tomorrow. If neither of these things work, my doc is sending me to a motility specialist in Baltimore. I've never been diagnosed with IBS. I think my doc right now is calling it etiological chronic constipation. CT scan showed nothing wrong w/ my colon, but it just basically stopped working 5 months ago! aaarrgghhh.


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## dt1070

Linzess basically worked for me but the side effects were unbearable. Some ingredient as well as the Amitizia that I am allergic too...I have been off for couple of weeks now and am back to square one with constipation...have an appt with my GI 2 weeks for a new plan..only plan I haven't tried is not eating but I really don't think that is practical..









Had a sitz marker test but I think it gave a false negative---too much miralax still in my system....I really think this is a motility issue and not just IBS with CIC but what do I know--I don't have MD at the end of my name..


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## leilanilea

Rose said:


> *Wow, those of you on the drug seem to be having very disappointing results. I had so much been looking forward to this drug to be available, but now I'm not sure if I should even bother trying it or not. I wish somebody would post who is happy with the drug. All the clinical trial results sounded so promising. I wouldn't mind but it is so expensive. My insurance company covers some of the cost. I can get 3 months (90) pills for $100 out of pocket cost to me. I have an appointment with my GI doctor on Jan. 17, so I guess I will talk it over with her. My IBS C has gotten so much worse. I never used to have pain, but lately even if I have a BM, I'm still in pain most of the time.*
> 
> *The only thing that relieves the pain is laying down.
> 
> 
> 
> 
> 
> 
> 
> *
> 
> *Rose*


Hello Rose, and others on site, I just started taking the lower dose this morning, and as of nearly 4 pm have not noted any difference in the way I feel. I will try to keep posting as I go along. The main thing I hope to get out of Linzess is relief of abdominal cramping and pain. I've had IBS for most of adult life and am 71 now. The pain is often debilitating, as so many of you know. Anyway, let's hope it works for at least some of us, and there is the new drug in the pipeline in 2b trials, I believe - can't remember name of it, but it reportedly does not have diarrhea as side effect. Also, BTW, I have an HMO and the copay for 30 pills was $60. Best, Linda/Leilani


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## skinnyguy99

This is my first post here. I've had incredibly fowl smelling gas and constipation for about three years now, and it has been unimaginably debilitating to my social life, work, and mental health. On top of it all, I have Recurrent Depression and Aspergers Syndrome (which, along with Autism, is strongly correlated with various GI conditions). Over the course of the past three years I had proctitis (which was successfully treated), two juvenile polyps removed from my colon, tested positive for SIBO and then negative after antibiotic treatment. Recently I had a capsule endoscopy which showed a small "submucosal" lump in my small intestines...according to my blood test it is not cancerous, although I am having a balloon enteroscopy later this month so that I can know for sure.

Usually the more constipated I am, the worse the smell of the gas (so the symptoms go away when the constipation goes away). Flagyl and Erythromycin temporarily relieve the constipation for a few weeks, but it always comes back. Over the past two months I tried taking Magnesium and it helped on and off...sometimes it gave me diarrhea (and dehydration...).

So my doctor gave me some Linzess samples yesterday and I took it (the lower dosage) at 11AM, had lunch at 11:30, then I had a nice, regular bowel movement. Then an hour later I had diarrhea. Then two hours later I had diarrhea again (more watery that time). And now I just had a semi-constipated bowel movement. So I have no idea if its helping or hurting, or both.


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## dt1070

@skinnyguy99 Diarrhea has been common with Linzess... there is a forum on inspire.com about Linzess too. Some people can deal with the multiple trips to the bathroom..for some it decreases in time...it is moving things along... It does work within an hour of taking it so you may want to take it earlier.


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## skinnyguy99

@dt1070 Hopefully the diarrhea will reduce in frequency. I took it again today (very early) with the same exact results (diarrhea within the first few hours, then constipation later in the day). What's worse? Diarrhea or constipation? Linzess doesn't seem to be "regulating" my bowel movements any differently than other Prokinetic agents (Laxatives, Magnesium, Erythromycin, etc). Have you heard of any similar symptoms / conditions related to Autism Spectrum Disorders (ASD)? I feel like I've tried just about everything. Mayo Clinic, Cedars Sinai, UCLA, other GI specialists and nutritionists, etc. I am simply not willing to accept IBS as a diagnosis...there must be a relevant etiology. Autistic enterocolitis is a sham.


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## dt1070

@ skinnyguy for me, I did experience costipation witht he Linzess---ramdonly..one day it would be diarrhea and then the next was constipation and then back to diarreah. I suggested taking it earlier so maybe you could have most of the effects and then move on with your day. I had a few hours of diarrha and then nothing the rest of the day. I had to stop taking it because I was getting the constipation more often, I had migraines everyday and bloating wasnt gone either. Since being off for a month--my migraines are gone...It happened when I took Amitizia too---something in it gives me the migraines.. My office is close the the b-room so I can deal with that issue but not having migraines everyday---they made me nauseous... There are some people having great results on Linzess.

I have not heard any relation to Autism---I think you are the first to bring that to my attention. I've had IBS for all my life---I'm 42 (cringe cringe) now...I am the only one in my family-on both sides that have digestive issues. My husband and both kids have ADD.. So far neither of my kids have experienced anything I did when I was a kid. And BTW---I'm pretty sure I've tried everything except the seratonin drugs---but diets--antibiotics, probiotics....still working on feeling better. People just have no idea what it's like. IBS has just been an umbrella answer when they have no answer--My GI has no answers but I like that he hasn't stopped looking for me. So that keeps me looking too. You shouldn't stop looking either....


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## razzle5150

my dr said you really need to take this Med for 30 days to let it get in your system and fully work and get straight.she said also no Mirlax with it... but if I have problem not going try MOM along side .... so far so good


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## annie7

i finally started trying linzess about ten days ago with the 145 mcg which did nothing for me so i switched up to the 290 mcg dose. the first couple days were great--loose stool, no D, and i felt good but then it just started giving me more and more fluid build up in my transverse colon which was uncomfortable and painful--it just sloshed around in there--yeech.. and i wasn't having much in the way of bm's anymore either.

it really reminded me of what happened last month when i tried cytotec (misoprostol)--great results at first then tons of fluid build up and little movement. anyway--i was so miserable over the weekend that i decided to just give up (for now at least) on linzess and took my ol' reliable dulcolax/milk of mag combo and today thankfully i feel so much better---got all that miserable fluid out along with a ton of backed up stool. i might try linzess again later--much later--but for now i'm sticking with my laxatives. i have colonic inertia, a rectocele and a twisted colon and my gastro has told me to take what i need to go...and that's what i need..laxatives. until- fingers crossed- something better comes out

hope the rest of you have better luck. sounds like for some of us, linzess isn't quite the magic bullet we'd hope for. sure do wish prucalopride would get approved here in the usa! i need a prokinetic to push stool out---not something like linzess and amitiza that just increases intestinal fluid.


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## dt1070

Sorry it didn't work for you Annie7...I have been reading some people are having good success with it. I wish it was me--but what can you do? Wouldn't it be nice if we could invent the drug we need? Who needs world peace---I need consistent poop....hahhaaa...Sorry, its been a long day, brain's a bit fried.


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## razzle5150

also My dr said to clean out first before taking this med .. so I did GO Lye first and then started Linzess the next day...


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## annie7

dt--thanks--sorry linzess didn't work for you, either. and you really gave it a good try, too, despite all the side effects and miserable headaches you had to put up with while trying it.

and yes it is great that it has helped some people.

and oh yes---that would be terrific if we could invent a drug that would help both ourselves and others. we'd not only find sweet relief but we'd be billionaires as well--lol...

take care..


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## hotrod1821

My doctor gave me a 30-day sample of Linzess (290mcg) which I've been taking for about 3 weeks now. Unfortunately, my insurance doesn't cover it and Walgreens told me that it costs $261 for the same dosage/amount.

It has been a miracle drug for me as I've suffered with IBS-C for nearly my entire life. I don't know what I'm going to do once I've finished my sample.


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## dt1070

hotrod---hopefully your dr will give you another 30day supply and work on getting an override from your insurance. There is no generic of this med and it is a step above the Amitizia--so that really isn't an option. Keep after them about it. Glad it worked for you!


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## dt1070

I found this on another forum----maybe it does help...thought I would share though

I receive the NeedyMeds newsletter. NeedyMeds is a 501(c)(3) non-profit information resource devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care.

On their website I found the following information on diagnosis-based assistance. (http://www.needymeds.org/copay_branch.taf)

As of 02/13/2013, they have information on 1359 programs.


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## annie7

Hotrod--yes, as dt mentioned, hopefully your doc can submit a prior authorization to your insurance company to get them to approve it for you.

that's what happened with me. my insurance is an hmo and they don't want to pay for anything. i called them about linzess and they told me that linzess was "not a covered service" but if my doc submitted a prior authorization they would "consider" approving it. so my gastro's office submitted the prior auth stating that the linzess samples had helped me and no other scripts did and that i'd aready tried amitiza, lactulose, miralax etc etc to no avail.

and like a miracle, insurance approved it. unfortunately about a week later linzess quit working on me and the side effects became unbearable so i had to go off it.

good luck! hope you can get coverage somehow --either via insurance with a prior authorization or through one of the agencies in dt's very helpful website! thanks, dt!


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## bjoy

found you all today after searching for reviews on linzess - i'm so glad i did!!! i really thought i was the only one on the planet who suffered so badly  i wouldn't wish constipation-related issues on anyone!

my ob/gyn's nurse practitioner just gave me a 30-day sample bottle of the linzess in the lower dosage. i thought, "yay! it's a 3-day weekend - i'll give it a shot!' i'll be honest - I'M TERRIFIED!!! after reading all the posts, i'm just scared! but i'm going to try it tomorrow morning. i wanted to start today, but got confused and thought i needed to take it after my first meal - not before. oops!!!

i've never been formally diagnosed with ibs-c, but i know i have it. i've been constipated since i was brought into this world (almost 43 years ago...sob...). I can't remember the last time i ever had a normal bm...i guess cuz it's never happened! ha! nothing has ever worked. and when it has, it wasn't for very long.

so, i will give linzess a shot tomorrow. would all of you kind, compassionate folks say a small prayer??

thanks!!!


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## dt1070

@bjoy----good luck! It's not any worse than you have already been through! just know you may or may not get the watery diarrhea stool...it may help with your cramps or not-----just allow yourself time to not go anywhere in a hurry! Try not to worry about it, you're putting more stress on your system.

I'm 42 geeeshhhhh-- I hate saying that, lol!!! but I've had IBS my whole life too. Before I had my kids and people said how horrible the labor pains and contractions were---I'd say you've never had IBS...and when I did go thru labor---I still felt I was right...the only difference is before actually giving birth!

Linzess will work after you've eaten--not as effectively though...Also, take it earlier in the day, so the effects are over sooner than later. Well wishes to you!!!!


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## annie7

bjoy--welcome to the group. and yes, good luck with linzess. fingers crossed, prayers said it works for you and brings you relief.

and i know it's natural but try not to be scared. it's good to try things otherwise we'll never know if they'll work for us. and a lot of times it's mostly the people who haven't had success with something who post on the board. the people who've had success often don't come back because they're happy, it works for them and they are getting on with their lives.

wishing you all the best.


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## bjoy

Thanks so much for the good thoughts!! Is it too sappy yet to say that I think I've found a whole new family of friends??? Nobody knows chronic constipation pain until you've experienced it for so long. My husband is so regular that it makes me sick. And when he tells me to "just sit on the toilet and go", I want to punch him in his mouth. Seriously. He makes me crazy with his regularity!!! Lol

So, around 8:30, I took the pill and then proceeded to clean up my kitchen from the night before (man, I was lazy!) and then I made a bowl of cream of wheat w/a slice of toast. Here goes nothing! Lol I have some gas, but I don't know if that's the regular gas I usually have ALL the time or if it's a byproduct of the Linzess.

But so far, nothing...I'm so glad I took this early in the day so I can see what happens. And thank goodness I'm off tomorrow!!!

You know what's funny? When this kicks in, I'll be glad to just get cleaned out for once. But what I think I'm most frightened of is how much my insurance will pay for a prescription. I have GEHA (Healthlink) and they have a good prescription program...except when it comes to new meds. My eye dr wanted me to take Restasis for dry eye and when I went to pick it up at Target, I was told it would be $140 for a one month supply (w/o insurance, it was over $300). I don't think so...my eyes aren't THAT dry! I told the pharmacist unless it was for cancer or an STD...or my eyelids were sticking together...that Restasis could stay right there at Target! Now, if the Linzess is cheaper, I'll be in heaven!!!

Again, thanks for all the well wishes  You guys rock!


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## Mary in Bethlehem

Hi. I took my samples of Linzess, but it did absolutely nothing for me. No side effects that I noticed, but no relief from the constipation I've had since August. The only thing that works so far for me is Dulcolax. I just wish I could have normal regular bowel movements! Good luck to all.


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## dt1070

Hi Mary, did you do any type of clean out before taking the Linzess---some people have been told to do that.. Also---I just had a appt with my GI and he said sometimes all these drugs that we try for constipation sometimes don't work on their own. They need to be in addition to something else. If you've had no side effects--good...but you may want to talk to your dr again and see if adding miralax or dulcolax with the Linzess. Good luck...


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## hotrod1821

@bjoy - It took about 4 days for me to notice any changes after taking Linzess. And I always try to take it right away in the morning so that I'm not having issues all day. Also, caffeine really makes it work too!


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## ebolus101

Hey everyone,

I was just recently received a prescription for lizness and will be hopefully starting it on friday. I am picking it up tomorrow afternoon, I was hoping to start it tomorrow but the pharmacy had to order it and by the time they said they would receive it it would be too late to take the dosage. For those who have started on the 290 dose did you get used to it? A little history on me I am a 23 year old male suffers from mainly abdominal pain and constipation. Up until now I have been relying on caffeine and senna to keep me going, but I realized that it is no way to live. I am nervous though for the side effects (well other then the D which sounds like a god send at the moment). Any input would be great!


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## rooler

Hi everyone:

I felt I had to post, even though I hate to be a Debbie Downer: I started Linzess 10 days ago (290mg) and was hoping, HOPING that diarrhea would indeed by a side-effect since my constipation is beyond belief. However, the side effects I had were incredible bloating and distention of my stomach--I look 6 months pregnant. All this to no evail since the Linzess didn't provide any relief whatsoever. I contacted my doctor and he said if it was going to work, it would've by now, so I quit. Like all of you, I was wanting this to work SO badly but it's not to be. Fingers crossed for the next big miracle drug, and best of luck to everyone out there who suffers from IBS--I really hope you're one of the lucky ones with Linzess!!


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## bjoy

So far, I'm happy to report that it's working! Since I work 0830-1700, I try to take it as soon as I get to work and then eat a breakfast-type meal. I had a few days where I couldn't take it because of life events (Polar Plunge and some sewer problems at home - we are on aeration and didn't want to make matters worse!! Ha!) But now that everything is good to go, I'm back on a regular schedule with the Linzess. Nothing has been solid, but I don't mind...it's coming out whereas it didn't at all before! But I'm happy to say that once I go, I'm done for the day...no all-day issues...and no distention or bad gas as a result of the drug. Here's for hoping this lasts!

So, now...the real scary part of seeing what my insurance will pay!


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## GoldenHelmet

Heya folks, new guy here. I found this place while looking up information about Linzess, and figured I might as well throw my 0.02 in to the pot.

I'm 23 years old, male, and I've been dealing with this stuff since I was 15-16 give or take. I'm not officially diagnosed with anything, since I don't like visiting the doctors often. Both me and the doctor are betting on IBS, and he gave me the 30 day sample of the 145mcg dosage to try. Hey, it's free, what's the worst that can happen?

I'm more in the IBS-D category than C. I only go once every few days, which fits the C category, but I've been that way since I was a kid. The real problem is that I have flare-ups lasting 1-2 weeks usually, where it's just massive pain and frequent toilet visits with every last box on the IBS-D checklist ticked. Inbetween the "bad weeks" I get the occasional painful day or two, and once in a while, I'm lucky enough to have 1-2 pain-free months.

Even though Linzess is more for the IBS-C group, my doctor said I should try it anyways. The pain is my #1 complaint, the rest I can handle.

I've been on it for about 2.5 weeks now or so. It's hard to tell if it's the medication or just being on a "good month", but so far I've only had one pain episode which, for once, was very minor; only enough to wake me up (mostly because it always starts with light pain, but quickly gets worse. My body is well adjusted to this routine and it woke me up fast) but not enough to send me flying to the bathroom. I did have moderate diarrhea (visiting the throne 2-3 times in a day, usually not far apart) for the first few days and still intermittently, but so far nothing else. Unless it's chosen diarrhea for the day, I still go 2-3 days without a movement, which is normal for me.

My sample will be running out soon. I'm going to find out if the insurance company will cover it and what the copay is if they do, and if everything is reasonable, I think I'll ask my doctor to prescribe me 1-2 months worth of the stuff. Like I said, part of the problem is that it's not a constant problem, it's just flareups that last 3-14 days, so it's hard to tell if the medication is keeping the pain away or if I'm just having a good month. Generally, the good months never last longer than 2-3 months absolute tops, so if I'm going to have a flareup, it should be soon. The longer I go without pain (or with only minor pain), the more convinced I'll be that this stuff works.

That's my experience so far. Figured I'd share, since I can't be the only one who has the pesky flareup issue. So far so good for me, hopefully it'll work out for others too


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## Susanne M

I have been diagnosed with IBS-C with slow transit and a redundant colon.

I went from being on a liquid diet for almost a month to gradually eating more solid food.

Now I am on the FODMAP diet, probiotics, Miralax, Dexilant and medication for nausea.

I tried Ametiza for a few months but the side effects were so horrible, I was almost too sick to function.

My doctor put me on Linzess two weeks ago and so far I have not noticed any side effects other than some cramping within the first hour of taking it.

I had one week with no bowel movements, then sudden diarrhea so no real pattern yet.

Since I am also taking Miralax I am not sure if it is the Linzess or Miralax working.

The pain, gas and bloating have remained the same so far.

When I saw my doctor a few days ago he briefly considered increasing my dosage from 145 to 290 but decided to wait a few more weeks since diarrhea seems to be a common side effect on the higher dose.


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## ebolus101

suasanne, where is your pain located? But have you noticed any difference at all? Any increase in side effects?


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## Susanne M

The pain is pretty much all over from between my ribs on down.

No side effects at all, no increase in nausea or pain the way I had with Ametiza.


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## Susanne M

Oh and a side note....for anyone who gets a prescription for Linzess, ask your doctor for the discount coupon to help with the co-pay. I am saving $30 per prescription for 6 months.


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## razzle51

didnt work for me either ... cost a fortune .....


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## ibsvisitor

Hello, all! I am also new - found you guys when I was researching Linzess. I just took my first pill yesterday (290) and within two hours had severe diarrhea. I ran to the bathroom several times throughout the evening and night. Like others have said... this was almost welcome considering the alternate problem. I took my second pill this morning and... other than the diarrhea, nothing. I have a two-week sample from my doctor. She suspects IBS-C but honestly, I have so much going on, we are just trying to figure out what it all is.

There are times I get sharp, sudden pains that cause me to grasp my husband's arm, double over and breathe through it. I had a colonoscopy and all is well. No Celiac (though I must admit, going of gluten to test that DID seem to help with the bloating/pain, etc) and Crohn's. There was some villi damage but nothing major. Bloodwork is all ok. I have a history of endometriosis and adhesions (c-section and partial hysterectomy). I am not sure if this pain is caused by intestinal issues or gyne issues. But I DO know I have been constipated since I was a child. I suffer stomach issues and migraines - always have. I suspect a milk intolerance but really don't consume it. Butter/cheese as a topping mainly.

My gyne is doing a U/S next week to check for masses and cysts. I have major nerve pain - tailbone pressure and sciatic nerve pain - which can be caused by either of these issues. Or maybe I have IBS and gyne issues. Whatever it is ... it's a mess. I am hopine Linzess does something but it will take some time to really know. I have no idea what the co-pay will be. The prescription is filled and waiting for me... I am waiting for the sample trial to run out and need to check on the co-pay.

It is nice to meet others to bounce ideas off. You all seem so supportive!!! Thanks for listening.


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## SouthFlorida26

Had to register to post.

I'm 30/male. Two years ago I started going from one extreme to the other every couple weeks (diarrhea and constipation) with sharp pains and burning.

I went to my primary DR, and he had me try Dicyclomine, but that backed me up really bad, so stoped taking it after a week.
After dealing with it for a year, I went to see a specialist.
They did all the blood work (which was fine), X-Ray, CT Scan, as well as colonoscopy and endoscopy.
All the biopsies and tests came back normal (no Crohn's or Celiac).
The only thing they said was that I have IBS with slow digestive muscles that gives me constipation, though
I'm not really sure what the difference is between that at CIC.
They wanted me to try natural methods for 3 months, which included
more yogurt, flax seed, exercise, and Miralax. Even though the Miralax
did help some with the constipation, the gas was unbearable, so had to stop
after a few weeks.

When I had my 3 month follow-up, I told them that I was still getting bad constipation most days,
with diarrhea a few times a month. I was given a prescription for Amitiza, 24mcg twice a day, and
was also told to try going gluten free for a month to see if that helped, even though the
tests showed I was not gluten intolerant.
Due to a $500 deductible on my insurance, the Amitiza ended up costing me $200 (but after
the $500 deductible is met, it would then just be $30 including the Amitiza discount card).
The first two days I took one in the morning after breakfast and one at night after dinner,
and had severe diarrhea, almost like when I had to drink the liquid prep for the colonoscopy.
So I changed to just one Amitiza per day after dinner, and did this for 8 days. During that time,
I would still get a "bubbling" feeling at night in my stomach and intestine, and the next morning
had a pretty good B.M. that was with mostly normal, but still had to push more hard than I would like.

I saw the DR this week after doing the Amitiza for 10 days, and they got in samples of Linzess (145mgc).
Due to my results with the Amitiza, he said to try the Linzess instead, and see if that
worked better for me, that there's really no way to know which one will work better
for a person unless they try them. I took a break for two days taking neither, and this morning took the
Linzess 145mcg 30 min before my 1st meal (at 10am). About an hour later, I had very bad
diarrhea, almost like when I did the Amitiza twice a day, and have been dealing with it on-and-off for 5 hours now.
I'll try it again each morning over the next few days, but if the Linzess 145mcg is going
to give me bad diarrhea all day, then I may end up going back to the Amitiza 24mcg once at night, since
that produced a somewhat regular BM the following morning.

I'm just wondering if what other people thought about the differences between Amitiza and Linzess?


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## ibsvisitor

I just finished Day 4 of Linzess 290 and man, I don't know what to think. The diarrhea has stopped... but I have terrible cotton mouth in the afternoons and get soooo fatigued! I am not a napper, but today I laid down at about 2 pm and woke up at 6 pm! I ate dinner and was fine, but around 10:30pm, had such excruciating gut pain, I couldn't sleep. Shockingly, I was still very tired this evening. I had caffeine today - did that do it? I am severly bloated right now and cannot sleep. I have no idea is this medicine is helpful or not. I figured I would take it through the weekend and that will put my just about a week. Think that is enough trial time to call the doctor?

Reading all these posts...it sure feels like the drs are pushing this drug. The more I read about it, the more I find it is completely unknown...


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## Susanne M

Well, I hate to report that I had terrible results with Linzess after being on it for about a month.

All day Friday I had horrible diarrhea and by 10 pm this headache started. Around 3 am I was in so much pain and so nauseous that I thought my head would explode. I have never had a migraine, but I am assuming that this must have been one. Terrible intestinal cramps all day. I haven't taken another Linzess and I am slowly beginning to feel better. I am usually not prone to headaches but this has been a terrible weekend.

Very disappointed and just about ready to give on doctors and medication in general.

Seems that the longer they treat me, the sicker I get. :-(


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## chronicallyme

I thought I would add a page to my cartoon blog www.chronicallyme.com in "honor" of my very brief trial of Linzess. For anyone who is interested in seeing my rendering of my experience, see: http://chronicallyme.com/ibs/a-new-pill-is-out/ I agree with Susanne that the more pills I try, the sicker I get. After only one day of it, I am back to my "bad" normal....


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## dt1070

I got headaches and migraines almost everyday from Linzess....for 5 weeks it was hell...my GI told me it wasn't Linzess doing it---glad to read someone else got them too...Suzanne--sorry you don't feel well...Im back to Miralax and PFD testing..


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## ebolus101

I have been on the 145 dose. It seems to work somedays and not the others. Does anyone have this? I am thinking of upping the dosage to 290 to see if that would help with it working daily. Another thing on days it doesn't work it just seems to fill my colon with fluid and not actually cause a movement, anyone else?


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## annie7

ebolus--for me, the 145 dose didn't work at all so i went to the 290. that worked for about a week, then i started to get increasingly less results from it and increasing side effects--bloating, ab pain and oh yes--it definitely just seemed to be filling my colon up with fluid that just sat there sloshing around in the transverse colon and would not come out. miserable. i finally went off it.

now i find the 290 dose will work if i only take it once every couple weeks although i still get all that ab pain, bloating and filled-with-fluid feeling when i take it. so i only take it as a last resort--when i'm desperate...


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## ebolus101

Thank you annie7, did you ever try any other perscription drugs? I am at witts end I thought this would be my saving grace, and it was at first.


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## annie7

oh yes--i've had chronic constipation for fifty years so i've had plenty of time to try all the c drugs that have been out--lol--not that there's been very many of them.. tried zelnorm back in the day . it didn't work very well for me--certainly not on a daily basis--and then it got pulled from the market. also tried both strengths of amitiza--neither dose worked at all and both made me horribly sick. miralax the same. even tried colchicine and misoprostol (cytotec) --they are used off label to treat constipation. they both worked for a while, then the results went down and the side effects went way up.

have you ever tried prucalopride? it's a prokinetic similar to zelnorm but with a better safety profile and without the cardiac issues. it has not been fda approved in the usa yet but it has been approved in other countries--the uk, europe, canada. if your doc will write you a script for it, you can order it through canadadrugs.com. it has worked for a lot of people.

currently there are clinical trials going on for plecanatide--a constipation med in the pipeline that sounds a lot like linzess and amitiza as far as how it works (increases intestinal fluid) but which is supposed to have much fewer side effects.or so they say. i see you are in san diego and it looks like there is a plecanatide trial currently going on there if you're interested.

http://clinicaltrials.gov/ct2/show/study/NCT01722318?term=plecanatide&rank=2&show_locs=Y#locn


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## ebolus101

This looks interesting, thank you. I am wondering if Linzess actually increases motility or not. It's like I feel some urge but nothing like when I use senna.


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## annie7

no--me either..stimulant laxatives work far better for me than linzess or any of these other meds work. i've read that these meds are supposed to be bowel regulators, not laxatives of course, but they sure do nothing for me.


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## dt1070

They are supposed to bring more water to the colon in order for the colon to push the stool along--so not really a stimlator but not a regulator either. A hybrid I guess but ---didn't work for me either the way it was supposed to anyway. @ Annie---I got troubles----I had my anorectal manotromy tests---can I just say it wasn't fun and I'm still having the effects from it today. 

I don't get the results for another 2 weeks but I know its not good. I didnt pass the balloon expulsion test and had to stop. The EMG took longer than expected too----sensation isn't where it should be... not a very happy camper I am...


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## annie7

dt--so sorry you've been having troubles!

what kind of effects are you having from the manometry, if you don't mind my asking? i'll probably be having that test too....

i have heard of people having problems after both these tests----so not fun!

i do hope you feel better soon--you've been through so much.


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## dt1070

Annie---it stinks! So I hope you don't have to...putting the scope in was a definite ouch! With all the pushing, holding and sensory things they did---my inners were very sore. I felt like I had to go to the bathroom but couldn't. All the muscles from my stomach down to my pelvis/butt are sore like I over exercised..only difference is those muscles hurt when you moved and with this the muscles hurt with no activity--achiness...my rectum feels full like I really need to go but can't.. I'm bloated...I had the EMG which is also a balloon inflated till you can feel it, the balloon expulsion where you sit on a commode and try to pass a balloon which is another ouchie! and the montromy which is the pushing, holding, coughing part. For something that seems simple---it hurts more than you expect. So if you have any hemmorroids , fissures , sores, have the lidocaine.. Now biofeedback is supposed to be put in the rectum as well so Im really thinking I'm all set with that...Knowing how I felt, I dont want to do that again! Im pretty sure this all started after my son's birth.. Labor came so fast I couldnt have an epi and I felt a huge pop before all the hell broke loose..Nurses running for doctors--telling me not to push and 20 min after getting to the hospital---he was born! so that little son of a gun did this...good thing he's so cute!!!!! I'm no wimp to pain so if I think these tests hurt---they did..


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## annie7

dt---so sorry you're having to go through all this. it sounds miserable.

have you talked to the doc about all these after effects? did he/she have any suggestions to deal with it or say how long it all lasts?

hope you feel better soon.


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## dt1070

annoying and uncomfortable---more than miserable...miserable to me is the flu or being on Linzess, LOL!!! I didnt call them considering they said nothing as to feeling this way to begin with. It can't last much longer. Good luck with your testing--maybe you'll have it better than me. Hope you get some answers too.


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## annie7

thanks-- i do hope you feel better soon. these invasive gastro tests are bad enough let alone having bad side effects afterwards as well...


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## Pat Holden

Hi all. I have had IBS Constipation for over 30 painful years. When I start to get the low abdominal excruciating pain, I end up on the floor begging for an ambulance. I start to pass out and the start vomiting from the pain itself. My lower back hurts badly also. I have been in the ER many dozens of time. Last week morpheen didn't get rid of the pain, so another more potent pain killer was administered two times. IBS runs in my entire family. One sister has diarrhea, one vomits, none have my pain. My sister told me about a new drug especially for my constipation IBS. I immediately called my gastrologist. He said he wouldn't recommend it. I told him I would not continue using all the various fiber drinks as they have proven not to work for me and he finally called in the order at my Walmart Pharmacy. I am on Medicare and I pay for a drug supplement. TAKE NOTE: My insurance paid only $20.00 of the $259.00 one month supply. I have the 145MCG dose. I got a letter from my insurance company stating this drug was not on their list and I would need a letter from my specialist to state I can not function without it. The letter would be submitted to their board for POSSIBLE APPROVAL OR DENIAL. I need to see if my doctor will do it since he was against doing it in the first place.

BUT NOW FOR THE RESULTS; This little white capsule really packs a punch! I started taking it the day after a laxative and trip to the ER.

DAY 1. Took at 9 am. Ate small breakfast at 10am. Evacuated everything by 11 am. Was like diarrhea.
DAY 2. Exact same exact thing as day before.
DAY 3. Didn't take a pill thinking the liquid evacuation had something to do with the previous laxative.
DAY 4. Took at 9 am. 10am, ate a waffle w/strawberries. 11am had great normal soft stool evacuation.

THIS IS A MIRACLE PILL FOR ME. I did feel some discomfort prior to evacuation, but nothing more. I would NOT RECOMMEND THE LARGER DOSAGE TO TRY THIS DRUG OUT. 
I really hope you are able to get this medication. For the first time in well over 30 years, I am not afraid to leave my house for fear of an IBS ATTACK. Incidentally, when my attack started I was driving alone down a mountain when I nearly passed out. I luckily saw a man who saw I was in distress. I was in so much pain I couldn't call 911. This wonderful guy called for me. Another passerby also came to my aide. He held my head while I was vomiting and stayed with my car until my husband (who he also called) came to pick up my car with my sister. I was terrified of a head on collision as I kept blacking out and finding myself in the other lane. I wish I could thank those 2 guys, but I have no way of knowing who they are. Normally not a sole is on this road.


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## dt1070

Hi Pat!

So glad its working for you AND you posted it! Not enough of the good results get posted and newbies are afraid to try it. Good luck to your continued success!!


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## rathycodes

Hi --

New to this group. Found it by googling Linzess which I just started this week. Short bio: started having sharp abd pain 4 years ago when I had a very stressful job. Like so many others, had CT scans, 2 colonoscopies, MRI's etc. and nothing ever definitive. Finally decided to just try a gluten free diet in Jan and it has helped tremendously but still have abd pain, and chronic constipation. Suspect I've had the chronic constipation for a while but I took so much fiber (wheat dextrin) and other fiber supplements to try to get rid of my 'irritable bowel' that I think I did more damage to my bowels with the 'wheat dextrin' fibers. Never made the connection and between 3 different GI docs, not a single one of them even suggested trying gluten free.....which is unbelievable to me now. It's made a huge difference. Anyway, was just given Linzess this week to try. The nurse practitioner that prescribed it said that she had some patients that took it 2X a week and they were good. She also said that even though it maybe wasn't designed to be used that way....that she had several patients that used it that way successfully. Ok, so I took the highest dosage (sample) on the 1st day and after about 2 hours spent the next 6-7 in and out of the bathroom with pretty significant diarrhea but there was some immediate relief from abd pain and even my constant and chronic lower back pain (which she said could also be a result of Constipation-IBS which I didn't know until now). I just spent nearly $10K on shots for my lower back (well, my insurance spent it) because my back always hurts too.

Anyway, I skipped the 2nd day and then did the lower dosage on the 3rd day. Today, day 4, did not take another pill but will take one tomorrow. So far so good! I did have a slight headache, and bellyache after the first pill though. Not so with the second, lower dosage pill though...and no real diarrhea. Yay. So....maybe some would benefit from trying it out every other day instead of daily. ALSO, I have had good response from a heavy duty probiotic called VSL #3, which you can buy on Amazon, and helps with pain quite a bit just by itself. Again, go lightly the first few days until you get used to it. I found that from a newsletter from Dr. Mark Hyman, the functional medicine guy, who did a piece on irritable bowel. It helped!! I see that some people have been tormented by this for many many years, and having only struggled w/ it for 4 years seems pretty mild by comparison...but you gotta keep trying!! So, for me: taking away gluten was 1st success; then the Linzess (on alternate days...lower dosage) and the VSL #3 probiotic. I now also take a tsp of ground flax and a Fiber Smart pill or two on my 'off' days of linzess. Will post again after a little longer. Hope something here might help someone!


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## jakmak52

I've tried it about a week ago and it truly works well, better than Amitizia. My insurance won't pay so I applied for PAP (Patience Assistance Program) to see if they can help. I've tried Ducolax, Senna-S, milk of mag, prune juice with polyetheline glycol (Miralax) and all the other OTC products with no results. I have OIC (Opiod Induced Constipation) from pain medication. Linzess has given me the best so far. RELISTOR (Injectable) is the last resort of all time. Good luck to you all.

Jack


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## cheekymonkeymama

New to the group. I am 43 yo. Have had chronic constipation for as long as I can remember (so much so that I thought a bm once a week was normal). About 2 months ago I bought a groupon for a colonic hydrotherapy session. At the time of my appointment, I hadn't had a bm in about a week, so I figured I was due anyway. Well, water in...lots of cramping, but nothing out. That was until he let me off the table and had me go to the restroom. I had no idea the human body could hold that much poop (really, I thought I was going to break the toilet!). Anyway, the colonic pretty much emptied me out; my stomach went down about three inches, and I felt great. Fast forward two weeks, and I hadn't had another bm. I tried taking fiber and exlax, then my dr. recommended I get a bottle of magnesium citrate from the walgreens. He assured me that would do the trick. I drank the whole bottle and nothing happened for about an hour. Then the pain started. I literally thought my intestines had twisted or something. I couldn't walk. I could barely move. Hubby took me to the E.R. where they did a cat scan. They didn't find any polyps, and couldn't really tell me what was going on. By the time they'd finished the scan, I wasn't in pain anymore, so they let me go home (still no bm). I scheduled another colonic the next day (since that was the one thing I knew would work). I had that colonic then went on a 10 day "cleanse"...all liquids and a colonic everyday (supposedly this was going to get my system regulated). By day 4 of the program, I was having a bm every night at home (yay me), unfortunately by day 8 I was back to only having a release when they were doing the colonic. So, I finished the 10 day program hoping that I would start having daily bms. No such luck. All that's happened now, is that I know how great it feels to not have pounds of waste in my system, and by day 3 of no bm, I feel like crap. When I had the E.R. episode, I booked an appointment with a specialist. There was a three week wait, so the appointment was about a week after the cleanse. I explained to the Dr. all of the things that had been going on, and all of the things I tried that didn't work (exlax, magnesium supplements, fiber, probiotics, enemas, and castor oil). He scheduled me for a colonoscopy, coming up this Wednesday) and he gave me a 30 day supply of linzess 290mg. I'm on day 4 of the linzess, and finally had a couple of bms. No diarrhea at all, no headaches, no bloating, etc. Fingers crossed that this will continue to work for me. Unlike most, I take the linzess at night (I also have to take a 24hr allergy med, and I prefer to take that at night, so I figured I'd take them at the same time so I wouldn't forget). So far I've had absolutely no issues with side effects, so fingers crossed.


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## cavefeles

I have been taking linzess for a few weeks now. When I took it in the mornings I found myself having terrible cramps and needing to run to the bathroom. This would last for a couple hours. Being a first grade teacher, I cannot be running out of the classroom whenever I want. I told my doctor about this and he told me that I should experiment and find a time in the day that I could take the drug that works with my body. I found that taking it right before I went to bed works best. In the morning I wake up and can pretty much clear myself out. I may have to go to the bathroom again an hour or so later, but there is no dashing to the bathroom or terrible cramping.

I don't know if this helps anyone but I thought I'd throw it out there.

Also, something that I have done recently that has helped reduce my symptoms is eating half a cup of All-Bran cereal in the morning with some lactose free milk. I put a few cut up strawberries to help the taste. : )


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## PamD

Hi all. I've had IBS-C for 30 years. Most of the time I've been just fine as long as I took my magenesium every night Had a flare here and there, but nothing major. Well, that changed about four months ago when magnesium wasn't cutting it anymore. It started getting bad about the time I started having stomach problems and started on Prilosec. (Have since been diagnosed with silent reflux, which doesn't cause heartburn, but burning in the throat and mouth, along with voice problems.) Anyway, don't know if the stomach problems or the Prilosec have anything to do with my worsening IBS symptoms; we're looking into that as far as the meds.

I never really had much pain with my IBS-C until the last month. After several months of the constitpation getting worse and worse, the abdominal pain started. (Had a colonoscopy four years ago and an abdominal and pelvic CT scan last week. No bowel problems found.) My PCP started me on Linzess 145 a couple of months ago, but I kept going off of it and trying other things such as diet modifcation and increasing fiber supplements because I don't like being on meds! Plus Linzess seemed to work great for a week and then stop. But it's gotten so bad that I decided to do what the doc said this time. I'm taking the higher Linzess dose and have been for about two weeks. Although I'm still not normal, I'm much better. The pain is decreased tremendously and I go each morning. Sometimes I even go before I eat anything, but most of the time I take the pill, wait 30 minutes, eat, and then go 10 to 30 minutes after I eat. Most of the time it's partial diarrhea, but I'd MUCH rather have that than the bad constipation!! As for the pain, some days are better than others, but overall better than when not taking the Linzess. Also, I keep reading that it's not an as-needed medication; it needs to be taken every day to be effective. Fortunately, I work from home in my own business so I can deal with the bathroom stuff easily.

Anyway, just wanted to share my experience with Linzess and hopefully give some of you some hope that it might work for you.


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## stents

Am new to this group and started Linzess in mid April. It started working (145mcg) first day. I have IBS-C. Did have gurgling, gas and a few extreme urgency issues but they were easy to live with compared to what I experienced over last 10 years. It gave me my life back, that is until the end of June, when it seemed to work a lot less effectively. I am also a member of the Inspire AMGD group and after reading posts there it appeared that this drug may require some experimentation. So I tried the 290mcg and it worked, but not reliably. I then tried taking the 145 at night before bedtime (around 11pm) and am now reliably having regular movements between 5-7am. I hope this continues and will report back results.


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## randizzle

I hate Linzess because it cramps my sigmoid colon, and I always have to go back and forth to the toilet and the water would splat all over the toilet. I can't really tell when I am done emptying out. the moment i think i am, linzess kicks in and make me go to the toilet again. in a span of 4 hours, I think i had to go 8-10 times. I hate it. does anyone else experience this with linzess? i have ibs-c, with incomplete bowel movement.


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## ehartney

Hey, everyone!

This is my first post and I didn't have the time to read all of the other posts on this thread but I wanted to contribute my story. It seems that my experience with Linzess has been generally more positive than the majority of the others.

I have only been experiencing symptoms for about a year. I started seeing my Gastro in April and after several blood tests, an endoscopy and some biopsies, he says that I "most likely" have IBS-C. For a long time, I experienced predominantly diarrhea with sometimes alternating constipation, but for the last few months the constipation has been overwhelming. I was unresponsive to the over the counter laxatives and the numerous fiber supplements I tried. The bloating was the most problematic issue for me and was what made me the most miserable.

My Gastro gave me samples of Amitiza, which worked for a few days but pretty quickly gave me severe nausea. I also experienced severe and very painful diarrhea each time I took the pill. I took the samples for about a week and couldn't stomach them anymore when I began experiencing daily nausea and vomiting.

He instead gave me some samples of Linzess. I feel as if its effects are much milder than those of the Amitiza. I have never experienced nausea on Linzess (145mg) and I like that you take it in the morning before eating because I also have to take Synthroid at the same time. I do experience diarrhea most mornings about an hour after I take Linzess but there is generally no cramping. It often feels like I have taken a lot of stool softeners because there is stool present in my BMs but it is very soft. There is often a lot of liquid as well, but, like I said, no cramping. These BMs are sometimes problematic because I do have increased gas with this medicine and sometimes the liquid in my bowels seeps out when I am trying to pass gas at work. But I have been on the medicine for about a month and a half now and that has only happened twice. I am hoping to start taking my metamucil again and that it will help make my BMs more solid.

In terms of the positive effects of Linzess: I have not experienced any constipation since beginning the medicine. The distention in my stomach and the general bloaty feeling are completely gone! The nausea and vomiting I experienced before are also gone because I am not longer "backed up". I am willing to sacrifice solid BMs for all of the positive benefits I've experienced. Linzess is obviously not perfect but it definitely helps me to live a more normal life- I'm no longer calling into work because of vomiting.

One more thing; I am only 21 and still on my parents' insurance so I am a little fuzzy on the goings-on here, but we were under the impression Linzess would be $109 a month with our insurance. My mom went to pick it up for the first time a few weeks ago and we had been given an "e-voucher" for $75, making the cost only $34. We are still not sure why this is or how the charge will appear next month but I thought I would include this. We have also been told that we can petition our insurance to only charge us the price of Amitiza (which is $40 something) as long as my Gastro signs off that I tried it and that the Linzess was a better fit for me.


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## Bpd1962

I began Linzess this past Monday. I have a movement that day, about 3 times. I didn't feel "cleared out" though. Then even though I took it every day I didn't go on day 2 or 3. On that third day I took the morning dose and the about 16 hours later took another out of desperation. I am happy to say I am in a rhythm and going very well even if not every day. I am so much better now. Medicare turned down my script flat. GI gave me a months worth for trial then he will resubmit for me. My general mood has greatly improved, I might add.


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## Bpd1962

randizzle said:


> I hate Linzess because it cramps my sigmoid colon, and I always have to go back and forth to the toilet and the water would splat all over the toilet. I can't really tell when I am done emptying out. the moment i think i am, linzess kicks in and make me go to the toilet again. in a span of 4 hours, I think i had to go 8-10 times. I hate it. does anyone else experience this with linzess? i have ibs-c, with incomplete bowel movement.


I have incomplete emptying as we'll. what strength are you taking? Maybe the 145mcg would be more doable. I take the 290.


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## Bpd1962

UPDAT: skipping today. Yesterday, stool loose but as hard to pass as C. We shall see. I think you have to work out your own routine. I hope it will keep me from it becoming tolerant. I can deal with a couple days no movement but not 3 days.


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## vettegrlee

Hello everyone. First, I want to say thank you to all of you who have responded to this. I now do not feel alone. My story is a long one, but I will try to keep it as short as possible. I have had a chronic problem for the past 13 and 1/2 years, and the doctors cannot find the problem. In January of 2000, I was straining to have a bowel movement, and felt something "give out". I think it was a prolapse, but the doctors said it wasn't. My first test was the sigmoidoscopy. Next, came the barium enema (oh Lord, want to talk about pain). After that, was my colonoscopy, where they had me drink Go-Litely and nothing came out.....I had to use an enema bag to get everything out. I stayed awake to watch the colonoscopy because I HAD to know. As drugged as they had me, I stayed awake and asked questions. The colonoscopy found nothing. Next, yes another next, came the transit test where I had to swallow pills with O-rings in them, and get X-rays every so many days. That test was positive for slow motility, and I was told my transverse colon looked like that of a 60 year old (at the time I was 29). After that, I was sent to the rectal surgeon for ligation. The surgeon checked for the prolapse, but it would not produce. I had what they called internal hemorrroids banded, but the pain was unbearable and they had to cut 3 of the 4 bands back off. No sedation at all for the ligation. I kicked like a mule, then buried my face and cried. I was in recovery for over 3 hours, while others came and went. I do not think it was internal hemorrhoids, I think it was a complete band of prolapsed rectum. I have seen two gastoenterologists, two surgeons, numerous doctors, numerous over the counter meds.......nothing worked. I have been on a colonic bucket for the past thirteen and a half years. NOW, a new doctor has prescribed LINZESS. I am on the 290 mcg a day. I was given samples for the month, and go see the doctor tomorrow. While getting refills on the samples about a week ago, the nurse asked if it was working. I told her yes, and no, but yes, but no, if that makes sense. I told her the second day I had the runs (when you have constipation this bad, the runs is a blessing). Then after that, a few days later the same thing. Then, nothing again. The only thing I find the LINZESS helping is that when I run the colonic bucket (1 1/2 quarts of water), there is less pain. The nurse said they could UP MY DOSAGE TO 435 mcg (3 of the 145 mcg pills a day) and see where that goes (although it has not been tried yet). I am bloated beyond belief, gassy, and uncomfortable. I just called the insurance company to see my cost since I have a deductible, and the script is going to cost almost $200. I was told I would be given a voucher to help pay, but not sure I want to stay on this. Nothing is happening. I can run the colonic bucket with pain right then, and after, not have to suffer ANY bloating at all. I go see a third gastoenterologist next month, after giving up hope for a long time, my new doctor gave me a referal, and I guess see how it goes. I tried to be short with this, but to let you know what I have been through, it took this much elucidation.


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## Bpd1962

Mt Linzess Update:
First I will let you all know that if you have Medicare Part D prescription coverage, you CAN get it approved. I couldn't get it approved by my coverage at first. Since my husband picks up all my scripts I never followed up. But I got so full and bloated I called my GI. He'd given me 3 scripts and I didn't know the name of the one not covered. Long story short, they said drop by for samples and the Dr would do the submittal for approval based on medical need and past failed therapies. So, he did that and I have only to pay my usual $6 co-pay for the new meds. I then got the letter from provider that I am approved for it for one year.
I am on the 290 dose from the start. I posted a few posts ago how the first few days went, so here is an update.
After that first few days I was taking it every morning faithfully and NOT going. This went on a few days and I got so miserable! I got desperate and took another dose in 18 hrs instead of 24. It worked by the next day. I still took my morning dose and cleared out well, but I have a little bit of incomplete elimination so have to be careful.
After fiddling with the schedule I find that if I take it every day, I tend to go regularly, but if I skip a day, the next day, I will take the one extra dose at least 12 hrs apart. I have only done this a couple times. I had to start liquid iron supplement and made sure it was a top brand that was non constipating. I also added Vit C to absorb the iron. I have had no issues caused by adding my iron. Most days I have normal stools and some days I pour out my guts, but don't mind if I can control myself and don't have pain and am staying hydrated. Ok, so, long story not-so-short. 
I really am sad to see so many people suffer this IBS-C for years. I have had it since childhood and in my 50s now.


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## redneptune

I started Lizness 290mg last week.. it worked sort of the first 2 days. I took 30 minutes before breakfast as instructed. within the first hour or so i had watery diarrhea x 2 but not a large amount.. since then have been extremely constipated. no real stool/bm.. i have taken ducolax 6 tabs with 3 tabs biscodyl yesterday because i was so bloated and painful and no BM since those first 2 watery small BM..plus used fleet suppository. only today to have a small amount of watery stool and that was after 2 more fleet suppository my lizness and mirlax... i have noted some nausea and headache... always lots of gurgling and passing gas..but not real action..I have noticed a tremendous amount of increased urination since on this med. today is 1 week on medication..so far not impressed...i was given a 30 day sample so will finish it just to see if things improve...i was really hoping this med would be more helpful. any other suggestions?


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## GirlsGma

Not happy to see so many people having these kind of health issues. It SUCKS!!!! I have been batteling Gastroparesis, IBS with C/C, Colonic Inertia, for years now. I also have massive adhesions from a c-section 27 years ago. I started Linzess about 6 or more months ago. I have found that if I drink a lot of water with it, I get better results. I can't take it in the morning because I can't be running to the bathroom every time I get the urge, and I mean the urge!!! I take it on the way home from work with almost a full bottle of water. I do get the cramps, but most of the time I get results. If I skip a dose, due to having something going on in the evening, I pay for it the next dose. The one thing I do know is that this is the only thing that allows me to fully empty, and I have actually lost about 12 pounds in the last couple of weeks, and my stomach isn't looking like I'm carrying around a pumpkin!! Maybe for some of you that it isn't working for need to just work with it and tweek it a bit. It does govern what I do, but I try to work around that. The alternative is miserable. Good luck until we find something else!!!


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## PamD

I've been on the 290 dose of Linzess for about three months. Most days I have diarrhea, sometimes a lot. Some days just really loose. No bloating. I'd MUCH rather have this than incomplete evacuation, cramping all the time, and always feeling like i have to go. Some days I do have cramping, but it's nothing like before I started Linzess. I've had IBS-C for over 30 years with few problems. Earlier this year, I started having several problems and had to do something. Glad I found Linzess. I just wish it worked for everyone because this IBS stuff is miserable.


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## ABNormal

I've had IBS-C for 40 years (of course they didn't call it IBS back then). I'd been doing really well with my natural products, yoga, probiotic and all of a sudden late spring, I began to have bad problemls again.

I'm a longtime member of this forum and I've been using Linzess for a little over 2 weeks. I have had a BM most days which has been good news. The really great news was that I went on a short trip to North Carolina to see foliage and friends and actually had a BM while traveling--never happened before.

I am on the 290mg and I take it 30 minutes before my dinner. I am doing well so far. For now my insurance is covering it at $30 a prescription (month).

I asked the gastro if there have been reports of it wearing off. She had not heard of anything like that.

So for now, I am happy with Linzess.


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## kc99

I tried an initial 145 mcg dose this afternoon. I thought I'd be very sensitive to it, but it really hasn't done much yet. I can try to be patient and see what happens over time, but the question that is coming to mind now is whether this is a low dose issue or if Linzess is just not going to be a helpful approach for me. If anything this evening I feel I have worse C than usual, and I'm a little concerned that taking a higher dose might lead to even more of the same (anyone have this experience)?

At any rate, just thinking out loud. It's still very early on in the trial of this med.


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## carl39

I was on Amitiza for about 2 months and felt horrible for the entire period and in May my doctor put me on LINZESS. It was okay but I had to stay close to a bathroom for 3-4 hours each morning because I never knew when it was going to work. I soon found out it way unreliable and only worked me about twice/week and the bloating and gas was there every day and every night. I put up with this from May-Oct this year. I decided to try my home remedy. I stopped my LINZESS and after cleaning myself out







I went to a high fiber input for breakfast EVERY MORNING; about 10-15g. At meal time I also made sure I added to my fiber. I also started taking MIRALAX (half dose) every other day. For the past 5 weeks I have felt great.







My BM is not what it used to be but am having small, frequent BMs and I am no longer bloated. I plan on doing this for the next 30 days and then return to my Doctor and tell him what I did









By the way in am 74 years young and I do go to the fitness center twice a week.


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## Tudo

I obtained first a prescription for amitiza after reading complaints about linzess which I didn't take, then saw my gastroenterologist who wrote me a script for linzess which I wound up trying first. That was 9/9/2013. I had a terrible experience with it. Oh it worked great for evacuating my constipated bowl in the morning but suffering thru needing to go and not being able to go because the prescription calls for taking the dang thing after waking up, no taking it and seeing a bowl movement in the morning but waking up and feeling like someone poured concrete inside and THEN taking something for it? I became light headed and also had a severe lower abdominal cramp/pain, very sharp but not long lasting then gone. So I didn't take it again till this morning which had a completely different effect.

The last 2 days have been perhaps among the worst in this ibs adventure for 4+ years. It felt as though my rectum was glued together. Very little liquid could make it out and it took me a long time just to do that which began at approx. 2:30am and continued off and on till I took the linzess at approx. 7am. I was desperate at that point. Miraculously I awoke an hour later having to run to the bathroom and almost as soon as I got there wham had a b/m and it continued for about 15 minutes in which case I felt completely evacuated and did not have any of the symptoms of taking too much stool softener or laxative, ( feeling like still needing to go sometimes for hours ). It was just over and I was well pleased.

So 1 out of 2 times was a joy. I feel similar symptoms as I did last night and hope to G-d I don't have a similar initial experience tomorrow morning but if I do I will take the linzess again and if it works like today I'll be jumping for joy. However I am still going to take a bit of stool softener and sennosides ( I was using exlax ) although I'll take less, just hoping to get a little movement when the pain wakes me up in the wee hours and then finish it off if necessary with linzess when I awake for the day. Or do you think it would be wise to just take it at 2-3am if I am awake in pain again and then go back to sleep?

Sleep, something I could start a thread about.

Thank you for listening


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## Anon A Mouse

*This reply is to Randizzle: * [I hate Linzess because it cramps my sigmoid colon, and I always have to go back and forth to the toilet and the water would splat all over the toilet. I can't really tell when I am done emptying out. the moment i think i am, linzess kicks in and make me go to the toilet again. in a span of 4 hours, I think i had to go 8-10 times. I hate it. does anyone else experience this with linzess? i have ibs-c, with incomplete bowel movement.]

In answer to your very legit question: :YES!!! First i had to stop crying from laughing WITH you because you just worded perfectly exactly what is happening to me. This is very compromising and I'm not sure if I should keep going and hope that my symptoms will subside and normalize. I have been in situations unknowingly where I can't simply run to a bathroom and have come close to a very embarrassing situation or disastrous really. *I have IBS-C. *

For anyone else, well, while on this medication, I do not have normal bowel movements. I have blow-out water. I'd rather just be normal. At any rate, the discomfort in my left lower quadrant seems to subside but ONLY if I am compliant and take this medication. I think I lost 6-10 lbs and I attribute that to the decrease in bloating. Silver linings I guess.


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## Brian John Scully

I've been taking constella 290 dose everyday for 2 weeks now. 
First 4 days it seemed to clear me out. My stomach hasn't been this flat in over 2 years. 
After the 4 days I played around with the best time to take it. Taking it in the morning would meaning running to the toilet all day with a sense if urgency, especially if taken with food. Plus I was too hungry to wait the half hour between taking it and eating, not good if I wanted breakfast if leaving for the day. So I decided to take it before bed. The next few days I found myself up at 4am after taking it about 11pm and having yet more clear outs, as the days went in its settled and I now have a normal bowel movement every morning when I wake up. When I wake up I lie in bed for a 10-15 mins, and as I sit there I can hear all the fluid moving about inside my bowels. I haven't heard that for years either. I pass a lot of gas with my bowel movements now and to think that all that trapped gas and stools before were causing me to be really really distended, I looked pregnant. I'm a guy so not a good look. I have pics if I figure out how to post them here I will. You will see before pic, distended pic, and after constella pic. It's only been two weeks but this med has been amazing so far. I feel lighter, I went shopping and was thinking to myself it just feels good to move about without having a food baby all the time. Anyway I've just kind of ranted so excuse the lack of grammar lol. Writing this quickly before I have to go out!!  anyway I'll keep you updated. I hope this med keeps working!! I've lost 4ibs in weight too, but that's probably just because I'm not carrying it all around with me anymore, my skins better no painful lumps on my scalp and I have more energy, but that might just be because I had a b12 injection recently. Anyway feel free to pm or reply or whatever


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## LvYouLo

I was given a trial of Linzess.. I had a horrible time with it. I suggest if you have IBS-C which is severe to try it, but if you have bowel movements 3 times a month or more not to try it. Maybe it was just me, but I really hope it can help you guys, I feel your pain.


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## LuvTheLoo

You need to make sure you drink lot's of water to flush yourself out. Are you on 290mcg? It has helped me tremendously! It's been a life saver for me. I am on 290mcg daily once in the morning., This damm IBS-C controls my life. People just cant understand why i have a large stomach belly because i am always gassy and bloated. And then on top of it all i forget i am still cleaning out and run to do errands and poop in me pants. Uhh! But it's better than surgery i think. That would be a long road of recovery for me. But i look fwd to going to the loo in the mornings! Literally i cant wait to relive the cramping pain when i wake up.

Vince



LvYouLo said:


> I was given a trial of Linzess.. I had a horrible time with it. I suggest if you have IBS-C which is severe to try it, but if you have bowel movements 3 times a month or more not to try it. Maybe it was just me, but I really hope it can help you guys, I feel your pain.


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## LuvTheLoo

You guys need to make sure you drink lot's of water to flush yourself out. At least 2 quarts or 1 liter of water. Plain water, no additives. This med has helped me tremendously! It's been a life saver for me. I am on 290mcg daily once in the morning., This damm IBS-C controls my life. People just can't understand why i have a large stomach belly because i am always gassy and bloated. And how come i fart in public. And then on top of it all i forget i am still cleaning out my colon and run to do errands and poop in me pants. Uhh! But it's better than surgery i think. That would be a long road of recovery for me. But i look fwd to going to the loo in the mornings! Literally i cant wait to relive the cramping pain when i wake up. I have learned how to live with this and manage my painful episodes. I have changed my diet slightly over the years. I have learned what to avoid to eat and when to stop eating for the night.

Lizness works and is helping me with my painful episodes. I start early in the morning and have at least 20 - 24 bowel movements. I go though a lot of TP! Ahggg! Better then surgery i say. Please reply comment on my entry and i would like to hear your responses and experiences. I will reply promptly to your replies. Thanks

Vince


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## LuvTheLoo

Hello Brian.

I seen your post and wanted to say hello. I am on 290mcg daily of lizness. It has helped me dearly. I am happy with it and hope it finds others that need this med. And doctors that can give it out as samples. I too run the toilet at least 20x. But i am happy to do that. I cant wait in the morning to clean out and start my day.

ttyl

Vince



Brian John Scully said:


> I've been taking constella 290 dose everyday for 2 weeks now.
> First 4 days it seemed to clear me out. My stomach hasn't been this flat in over 2 years.
> After the 4 days I played around with the best time to take it. Taking it in the morning would meaning running to the toilet all day with a sense if urgency, especially if taken with food. Plus I was too hungry to wait the half hour between taking it and eating, not good if I wanted breakfast if leaving for the day. So I decided to take it before bed. The next few days I found myself up at 4am after taking it about 11pm and having yet more clear outs, as the days went in its settled and I now have a normal bowel movement every morning when I wake up. When I wake up I lie in bed for a 10-15 mins, and as I sit there I can hear all the fluid moving about inside my bowels. I haven't heard that for years either. I pass a lot of gas with my bowel movements now and to think that all that trapped gas and stools before were causing me to be really really distended, I looked pregnant. I'm a guy so not a good look. I have pics if I figure out how to post them here I will. You will see before pic, distended pic, and after constella pic. It's only been two weeks but this med has been amazing so far. I feel lighter, I went shopping and was thinking to myself it just feels good to move about without having a food baby all the time. Anyway I've just kind of ranted so excuse the lack of grammar lol. Writing this quickly before I have to go out!!
> 
> 
> 
> 
> 
> 
> 
> anyway I'll keep you updated. I hope this med keeps working!! I've lost 4ibs in weight too, but that's probably just because I'm not carrying it all around with me anymore, my skins better no painful lumps on my scalp and I have more energy, but that might just be because I had a b12 injection recently. Anyway feel free to pm or reply or whatever


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## flossy

LuvTheLoo said:


> Hello Brian.
> 
> I seen your post and wanted to say hello. I am on 290mcg daily of lizness. It has helped me dearly. I am happy with it and hope it finds others that need this med. And doctors that can give it out as samples. I too run the toilet at least 20x. But i am happy to do that. I cant wait in the morning to clean out and start my day.
> 
> ttyl
> 
> Vince


Um, when you say 20x are you just exaggerating, or is it really that bad?


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## LuvTheLoo

flossy said:


> Um, when you say 20x are you just exaggerating, or is it really that bad?


are you understanding that i use the toilet 20x after taking Linzess? To be able to empty out completely yes i use the toilet that many x. After drinking 2 quarts of water like everyone else should after taking that pill.

vince


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## flossy

Honestly? Holy Toledo!!!



LuvTheLoo said:


> are you understanding that i use the toilet 20x after taking Linzess? To be able to empty out completely yes i use the toilet that many x. After drinking 2 quarts of water like everyone else should after taking that pill.
> 
> vince


Honesty? Holy Toledo! I think my rectum would fall out. I'm laughing but I'm serious too! After two BM it gets really puffy down there already, after 3 (on one day) I will bleed a bit (exterior hemorrhoids). (Sorry for the gross stuff.)

Thanks for the reply. I much appreciate it as this board can get REALLY slow at times.


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## LuvTheLoo

flossy said:


> Honestly? Holy Toledo!!!
> 
> Honesty? Holy Toledo! I think my rectum would fall out. I'm laughing but I'm serious too! After two BM it gets really puffy down there already, after 3 (on one day) I will bleed a bit (exterior hemorrhoids). (Sorry for the gross stuff.)
> 
> Thanks for the reply. I much appreciate it as this board can get REALLY slow at times.


Morning Flossy

Yea it's between 10x to 20x i visit the toilet to empty out. But it's all water and dirty poo. But i don't really have to push it out. I would never be able to use a pota potty. Or one of those dinky tiolets for camping.

No problem on the gross stuff. I am not a shy man. I been though it all and will live with this IBS-C the rest of my life unless surgery becomes a option. Yea this board gets really slow but i have a idea . I would like to post daily blogs of my routine. I doubt i'll do it but it's an idea. And like i say if you want some feedback i welcome a chit chat. I am also on Skype. Just ask

Vince


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## Jack Makinson

dt1070 said:


> Sorry it didn't work for you Annie7...I have been reading some people are having good success with it. I wish it was me--but what can you do? Wouldn't it be nice if we could invent the drug we need? Who needs world peace---I need consistent poop....hahhaaa...Sorry, its been a long day, brain's a bit fried.


Have you tried Relistor 12mg. I have OIC (Opioid Induced Constipation) from pain medication. I've tried Ducolax, Miralax, Lactilose,MOM and Amitiza with unsatisfactory results. My PM Dr. prescribed Relistor 12mg Injectable every 48 hrs. with excellent results. However I'm interested in Linzess as an alternative.


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## annie7

Hi Jack. i'm so glad you doc prescribed you relistor for your OIC. i've heard it is really effective for that.

i did ask my gastro about it but he said that because of the way it works it is only effective for people with OIC--not for people like me. . which i thought he'd say since i'd already read about it's mechanism of action on the relistor website. it's a special narcotic drug (Methylnaltrexone) that works by preventing constipation without reducing the pain-relieving effects of the narcotic you're taking. it basically blocks the constipating effects of the narcotic. it blocks opioid binding in tissues such as the gastrointestinal tract.

on another board i read, i've read posts from a few people who did not have OIC and tried it anyway for their constipation and said it did nothing for them.

my insurance only covers relistor if you are diagnosed with OIC--and not for any other reason. it is a very expensive medication.

but yes, thanks for the suggestion. if i ever have to go on narcotics for pain, i will certainly ask for a script for it.


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