# Anyone taking Linzess?



## ClarissaB (Jul 2, 2013)

Hi,

My doctor just prescribed Lizness & I was hoping to get info from those who've taken it & how it worked for you. The side effect says it causes abdominal pain which I already suffer very much with & diareha so I'm scared to take it.

Thank you!!!

Take care,

Clarissa


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## Newlinzessuser (Aug 6, 2013)

Hello folks,
I'm new to blogging and IBS, too. I just started taking Linzess 2 wks ago. Dr said it will take 4-6 wks to get full effect. I had diarrhea the first two or three days on it. Now stools are definitely loose but i am going every day. Try to stick with it, i was ready to give up after the first two days, but it is much better now. I never had pain, but had acid reflux, bloating, constant belching, and stomach gurgling. I would go daily, but always felt i could go more. That is almost gone now. My only complaint is i seem to have dry mouth, and that has only recently started. I am wondering, has anyone else had that problem with Linzess? Your thoughts would be appreciated.


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## Bpd1962 (Aug 6, 2013)

New Member. I am new as well. My GI prescribed Linzess a month ago. Medicare will not pay for it. I went by Dr today and they gave me a months worth to try and see how I do with it. I took first dose today. While it worked in a few hours I am not yet cleaned out. When I have not gone in 3weeks many times I found myself lost 3lbs just today. I have at times been so bad I will drop 10lbs immediately.
I appreciate knowing it could take some time to clear out and stop bloating.


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## Bpd1962 (Aug 6, 2013)

Newlinzessuser said:


> Hello folks,
> I'm new to blogging and IBS, too. I just started taking Linzess 2 wks ago. Dr said it will take 4-6 wks to get full effect. I had diarrhea the first two or three days on it. Now stools are definitely loose but i am going every day. Try to stick with it, i was ready to give up after the first two days, but it is much better now. I never had pain, but had acid reflux, bloating, constant belching, and stomach gurgling. I would go daily, but always felt i could go more. That is almost gone now. My only complaint is i seem to have dry mouth, and that has only recently started. I am wondering, has anyone else had that problem with Linzess? Your thoughts would be appreciated.


While I have been waiting to get my Linzess today, I did a bunch of research. The way Linzess works is by gathering warer to the intestines to enable a movement. So really the advice to drink 8+ glasses of water a day is very true for those of us using meds such as this. This could be the cause the dry mouth problem. Intestines are "stealing"all the water it can from the rest of our body, thus you have to go up on water. Also caffeine can dehydrate you quickly. Been there done that. Dry mouth for me, causes difficulty swallowing and that gives you a smothering feeling.


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## ClarissaB (Jul 2, 2013)

Hi,

Thank you for the advice. I'm scared of the "watery stool" which I've heard about. As you, Bpd, described it now I understand what causes it. I'm also on Medicare and have found some IBS meds are not covered by our insurance which shows how our illness is not taken seriously. That really makes me mad!!! Librax isn't covered either. Do you live near a Costco? That's where I got my Librax cheaply. Or if you're poor there are ways to get meds for free or cheaper then out of pocket. I'd be happy to share any info I have with you.

I'm glad it's working for you New Linzess User. I've had dry mouth with other meds, like Bpd said, drink more water & it should go away. If that's your worst side effect you're very lucky!!! Good luck getting better!!!

Thank you for replying!! Best wishes to you both!!!

Take care,

Clarissa


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## beejay (Aug 7, 2013)

Hi, My Dr. prescribed Linzess for me. I took the free samples and had to stay at home all weekend. The diarrhea was terrible. Needless to say, I did not get my RX filled.


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## ClarissaB (Jul 2, 2013)

Hi beejay,

Thanks a lot for telling me your experience. I've been reading the same thing all over the internet. No thanks!!!! These doctors prescribe us meds without knowing how bad the side effects are. Mine got upset because I didn't try it last month when she gave it to me. We're the ones that have to put up with the diareha not them.

May I ask if you have severe pain on a daily basis? I do & it is unbearable. I can't live like this anymore. I get no compassion from my doctors.

I wish you all the best!!!

Take care,

Clarissa


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## Bpd1962 (Aug 6, 2013)

ClarrisaB, thanks for the info. I'm expecting a battle over Linzess with Medicare for sure. I have been to ERIC and admitted to hospital every two weeks since December. I wonder if the want to keep paying for the CT scans, ex rays, specialists and tests, not to mention very expensive stomach and I'VE pain meds, every two weeks? Or 1 effective med once a month?


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## Bpd1962 (Aug 6, 2013)

Bpd1962 said:


> ClarrisaB, thanks for the info. I'm expecting a battle over Linzess with Medicare for sure. I have been to ERIC and admitted to hospital every two weeks since December. I wonder if the want to keep paying for the CT scans, ex rays, specialists and tests, not to mention very expensive stomach and I'VE pain meds, every two weeks? Or 1 effective med once a month?


That should be ER not ERIC


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## ClarissaB (Jul 2, 2013)

Hi Bpd,

I agree, I've been to the ER twice for CT scans. I wish you luck!!! You certainly deserve some!!! Do you think Linzess is worth the fight? Have you read all about it? I'm very concerned about the diareha. I hope you win against Medicare & that it works for you!!!

I wish you all the best!!!

Take care,
Clarissa


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## Bpd1962 (Aug 6, 2013)

Update: one full week on Linzess. On a scale of 1-10 I give Linzess a 8. First day I was thrilled. Second day I didn't have a bm. Third day I began to feel frustrated and dejected that it was not going to work. So, that evening I to another. About 4 hours later I did go. I have gone well at least once ever since. I am going to keep taking it til I am nearly out of samples then will check back in with GI. That will give me a good trial of a month.
I am not quite so bloated. I have a bit of a bloated stomach anyway but not in pain. I take a med that contributes to that a s well.


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## ClarissaB (Jul 2, 2013)

Hi Bpd,

I wish you luck that it will continue to work!!!! I'm very glad you're not in pain!!!

Take care,
Clarissa


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## Majik Stuff (Aug 13, 2013)

Well linzess has worked wonders for me with colace and senecot i go maybe twice a wk now i take linzess 145 mcg and within a few hrs im in the bathroom now it does give me gas like a hr before and a couples hrs after which gas x helps but i did try 290 mcg and it gave me watery stools so i just stick to the lower dose its expensive but its the only thing that works for me but u can try going to a gastroentologist they keep samples


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## ClarissaB (Jul 2, 2013)

Hi Majik,

I'm glad you are having success!!! Thanks for telling me about your experience. I've tried so many pills. I'm scared of this one. I drink Miralax and that is a miracle for me. I wish you much success in the future!!!!

Take care,
Clarissa


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## ClarissaB (Jul 2, 2013)

Hi Bpd,

May I ask what pain you were in that Linzess has relieved you of? I have unbearable pain every morning when I first wake up that no pills help except morphine. I'd love to get off the morphine. My pain is in my lower abdomen, feels like a belt tightening around that area. It's been 16 months and the pain is driving me insane!!!

Is the Linzess still working well for you? I hope so!!

Take care,
Clarissa


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## ClarissaB (Jul 2, 2013)

Hi Bpd,

Just called pharmacy. Insurance won't cover it, just like Librax. Seems we're out in the cold on a lot of IBS medications that could improve our condition. It isn't fair & I don't understand it. The GI's I've been to give up on me & say they cannot help me, medications I can get don't help me & then there's the ones I can't even get. So who's helping us who suffer from this awful illness???? I never even hear of any organizations raising money for research to cure us. Of course I feel hopeless & helpless. I'm on Social Security & cannot afford medications unless they're covered by my insurance. My pain doctor is talking about not treating my IBS pain so then I will be totally screwed. This is causing me to be very depressed.

Take care,
Clarissa


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## Newlinzessuser (Aug 6, 2013)

Hi folks,
I have now been taking linzess for about 2 1/2 months. Taking it every day causes very watery stools and/or diarrhea, so after consulting with my GI dr, am now taking it every other day. I still get the watery stools, but it is at least better than the gas and bloating from constipation. My question to all of you is, has anyone experienced any side effects relating to sinuses? About two weeks ago, I had a pressure headache that lasted a week. And about a month into taking the drug, I started with a spasm-like cough and now have post nasal drip. This is ongoing and getting pretty annoying. Went back to GI dr who had me do an upper GI series, which came back negative. Dr does not think cough is caused by linzess. And because it is fall, and I have had sinus issues in the past(although that has been under control for a good long time now), I'm not sure. Has any experienced anything like this while on linzess? Thanks for your thoughts.


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## ClarissaB (Jul 2, 2013)

Hi,

I'm sorry I can be of no help. My insurance won't cover it & it costs $264.00 for 30 pills. I wish you luck finding some relief for your sinuses. This is a good place to find answers seeing as the doctors have been no help. You may want to begin your own thread. You'll catch more people's attention that way.

I wish you all the best!!!

Take care,

Clarissa


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## debbylev (May 22, 2011)

Here is a link to their savings program

https://www.linzesshcp.com/patient-resources-and-information.aspx

Site states for 145 dose they will send you coupons for the price to you being $30.00 for the month

Hope this helps someone


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## annie7 (Aug 16, 2002)

Debby--thanks so much for this information! oh yes--i'm sure it will help lots of people.


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## ClarissaB (Jul 2, 2013)

Thanks Debby!!!

I'm going to try Amitiza but I'm sure your info will help some people!!!

Take care!

Clarissa


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## annie7 (Aug 16, 2002)

Clarissa--

good luck with amitiza--hope it works well for you.

amitiza has a prescription savings program too--here's the link in case you haven't already seen it:

https://www.amitiza.com/dual/fullform/default.aspx?from=hsc


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## Kj126 (Sep 29, 2013)

Took samples for 8 days. Diarrhea 3+ times each day and horrible gurgling, nausea, crampy feelings...I did not ask for a prescription! I hope it works for you though!


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## ClarissaB (Jul 2, 2013)

Hi Annie,

I'm sorry, I replied but it didn't show up. My insurance covers Amitiza. Thanks for the info though!!!!

Best Wishes!!

Clarissa


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## ClarissaB (Jul 2, 2013)

Hi kj,

Yeah, I heard stories like that on other sites. Doesn't sound good for me. I'm glad my insurance won't cover it. Amitiza is what I will try next. Maybe you'd be interested in that? I read it causes stomach pain which is what I have now but wrote to some people who thought it worked great. I could let you know what I think if you want me to, once I get my script filled. I could be your guinea pig. lol

I wish you all the best!!!

Take care,

Clarissa


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## annie7 (Aug 16, 2002)

Clarissa--the amitiza savings program may also help in reducing your insurance co-pay. i filled out the online form but i didn't print out the card since i'm not taking it anymore so i wasn't able to read all the savings information on it. but if you have a high insurance co-pay for amitiza, you might want to fill out the info and print out the card to see if it'll save you some money.

i have one of these cards for lunesta. my regular insurance co pay for lunesta is $100.00 but with the lunesta savings cards i pay only $50.00. it's terrific! even the pharmacist was impressed--lol.

good luck with amitiza! hope it helps.


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## ClarissaB (Jul 2, 2013)

Hi Annie,

Thanks for the info & well wishes!!! I've lost faith on all these IBS pills but will give it a try. I do okay with Miralax, Milk Of Magnesia & stool softeners or Exlax when needed. I just worry about stomach pain. We'll see. I hate to tell you that my co-pay is $3.50 & I couldn't afford it this month so will get it in October.

Take care!









Clarissa


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## annie7 (Aug 16, 2002)

know what you mean about the pills...but yes, it's good to try them anyway. so sorry you can't get it til october. good luck and take care, annie


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## ClarissaB (Jul 2, 2013)

Thanks Annie!!!!

Best Wishes!!!

Michele


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## Jennifer Embry (Sep 11, 2013)

I was prescribed Linzess in July and have been taking it. It is very expensive,but worth it! I am going more regularly than I have been in years. Sometimes my stool is lose, but after 6 weeks, I am having more solidly formed stool. Some days I still don't go at all, which worries me, but it does not last more than 2 days. Much better than it has been and I am going to stay with it.


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## ClarissaB (Jul 2, 2013)

Hi Jennifer,

I'm glad you're having such success!!!!

Best Wishes!!!

Clarissa


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