# Linzess Experience?



## Bonzaii (Feb 13, 2013)

Hello everyone. This is my 1st post so maybe I should share my story a bit? I'm a 28 year old female and my belly issues go back as far as I can remember. My earliest memory is being maybe 5 or 6 at the doctor for belly pain and being told I was constipated and needing to eat more fiber. Then I was diagnosed lactose intollerant around 10 / 11. I hated lactaid so I would drink milk with no ill effects for about a month until I would get a massive attack. I would have such severe absominal pain that it was equivalent to the pain I felt when I had appendicitis. After hours of this pain I would vomit and the pain would go away, and I could go back to drinking milk again.

I was young. Since then I have smartened up. I no longer bring milk into my house and other than that I consume very little dairy. I started seeing a GI specialist about 3 or 4 years ago because I had had enough of the pain, bloating, gas, and irregular bm schedule. It's normal for me to go 2 or 3 days without 1. So far GI doc seems to think it's IBS-C. I'm not really sure if I lean more towards an IBS-C diagnosis or a CIC diagnoses. He started treating me with fiber, laxatives, stool softeners... nothing helped. Then I got pregnant and had to stop all my meds, but... my symptoms magically disappeared!

After my son was born, I continued to remain symptom free. Everything seemed normal. Until I stopped breast feeding 2 months ago. Now I am back at square one. Saw my doc about 2 weeks ago and he gave me a 30 day trial bottle of Linzess. The smaller dosage (I am somewhat of a petite person). And so far, it has done well to relieve my constipation symptoms, but it's replaced ith with SEVERE diarrhea. I have not had a normal bm since I started this med. I am at my wit's end. I no longer have any hope for feeling "normal" ever again.

Has anyone ever used Linzess and had these side effects, and had them pass? I don't want to give up on Linzess so quickly, but if I take it in the morning like it prescribes, I spend half my work day running to the bathroom. I tried taking it at night at a suggestion I had read online, and I wake up in the middle of the night to have to go, and then multiple times after that so I have not been sleeping well.

I really think a lot of my issues could be solved with diet, but I have changed my diet multiple times to try and fix these issues and nothing helps. I just can't take this anymore. I'm tired of being in pain. It's effecting every aspect of my life. The stress has made me feel very depressed, to the point where it's starting to feel like a chore to play with my amazing, beautiful 15 month old son.

I have not yet had any diagnostic testing other than blood work which came back normal. I am hoping after my next visit at the end of this month he will schedule a colonoscopy or even an entire upper GI series. I just want asnwers.


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## hotrod1821 (Feb 16, 2013)

I have had the same issues as you- bloating, stomach pain, gas and not being able to go to the bathroom for a few days. I finally saw my doctor a few weeks ago and he gave me a sample of Linzess (290mcg) and it has made quite a difference! I haven't had severe diarrhea issues however, I was having diarrhea after only taking it for 3 days. I've noticed that if I drink something caffeinated shortly after taking it, I will have diarrhea that usually lasts throughout the day. Other times, I am able to just go to the bathroom normally. It just depends on the day.

I think it's something to bring up to the doctor. But then again, maybe it might just take some time for your body to get used to it.


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## Nicole Mathews (Mar 7, 2013)

I have been taking Linzess( 290 mcg) for a little over two weeks now. Prior to Linzess, I was suffering from extreme bloat and pain. I have noticed that the bloat and pain have completely disappeared. But, I too have experienced the extreme diarrhea you are having.


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## SouthFlorida26 (Mar 8, 2013)

You may want to check out my post in the other thread:

http://www.ibsgroup.org/forums/topic/158676-linzess-linaclotide-is-here/?p=887829

I tried the Amitiza 24mcg twice a day, and had bad diarrhea, but after changing to once at night after dinner, it was better.

This week I got a trial of Linzess 145mgc, and today tried it 30 minutes before breakfast, and have bad diarrhea all day.

I'll keep trying the Linzess for a few days, but if the diarrhea continues, then I change back to the Amitiza once at night,


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## Barbara Griffin (Mar 30, 2013)

I have been taking Linzess for several weeks; I have had the same problems others are commenting on: initially terrific, thought I was cured--then with continued use the constipation returned. As I was given 145mg samples, I tried taking two as that is the recommended dosage. Result? Horrible diarrhea. This happened one more time. I am now taking it for 2 days, then skipping a day. No more diarrhea, some times loose and frequent, but other than that, seems to be working better. Just wonder if anyone else has tried playing around with the dosage to improve symptoms. I have not tried Amitiza, my MD said it was expensive, so she gave me the linzess samples she had. I know everyone posting here feels like I do, just wanting to get through a day without focusing on bathroom. The diarrha bouts are the worst, because my neural responses are not good so it can involve a complete change of clothes. Love some feedback.


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## Rue (Mar 13, 2013)

Interesting about symptoms disappearing with pregnancy/breastfeeding.

I still had bloating and constipation as well as watery diarrhea with Linzess. Wasn't good.


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## Match (Jun 27, 2013)

Hi,

My doctor gave me some samples today of Linzess. I don't know the strength off hand, but most of you above have indicated diarrhea with use. My problem stems most likely from many years of some diabetic nerve damage to the nerves that affect the stomach and intestines.

I have not taken any of the linzess yet, but was curious if others may have tried an every other day approach to taking this medication, and what results you may have had in reference to the linzess diarrhea side effect.

I don't really know, but I just wonder if the dosages for this medication may simply be too high. Now, there could be a lot of people that have taken this, and not really had a diarrhea side effect. I understand they want the medication to work, but maybe an even lower dosage should be put on the market. One may only get two or three bowel movements a week, but if it makes a person feel better, and no diarrhea, then all the better.

It makes it sound like maybe one should just use mineral oil, and may get about the same reaction.

Posted 6/26/2013


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## Barbara Griffin (Mar 30, 2013)

I started with samples of 145mg. Since that seemed to cause diarrhea, I changed to two days in a row, then skipping a day. That worked for awhile, now the diarrhea seems to have returned with usage. So, I think I need to not take this at all. I also have really almost no warning when it starts, so it's too risky to continue. Of course, when I stop taking it I return to the problem of having to go several times and only rarely having a "normal" bm. I'm scheduled for a colonoscopy Monday which should keep me suitably miserable, but my GI MD insists (although it's less than 10 years since my last one, but he thinks 7 is better). Since I have this history, as well as a family history of Crohn's Disease, it's better safe than sorry. People without this problem don't understand how it controls your life. I never realized that constipation can make you feel so terribly awful. But diarrhea interferes with your life dramatically as well. A long walk is asking for trouble; I refused to use depends, but sometimes it can be embarrassing. Would love to hear any success stories out there!


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## Match (Jun 27, 2013)

I haven't taken the product yet, but I asked the pharmacist if the medication should be fairly well even through out the capsule mixture, and she said it should be, so if I try it, I have the low dose cap, I am thinking of trying just a half of capsule or slightly less since it appears that I can open the capsule. It's just a possibility, but maybe smaller daily doses may not produce BM as quick, and perhaps no diarrhea would occur.

I just wonder how many people that have taken this product, have not had diarrhea issues with the drug. Generally, people that have not had a problem with a drug do not end up posting Online about his/her positive experience.

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Here are some postings I found that do have some positive aspects about Linzess.

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Hi everyone,

I don't come on here much, but I do read occasionally. I have been diagnosed with gastroparesis and maybe IBS-C (not officially diagnosed, but GI says maybe). Either way, constipation was a big problem for me, like for many of you. I was taking a LOT of Miralax and going every 5+ days, with a lot of bloating and pain. I know that's not as bad as some of you here, but still not pleasant.

My GI put me on Linzess (290 mcg). I have been taking it for about 3 weeks now. I also take 1 dose of Miralax in the evenings (just one!). So far, I have a BM almost every morning after I drink some water and eat a little something! It is always loose and watery, and usually VERY urgent - I would say I have 3-6x watery episodes over the course of an hour or two. Unfortunately, this means it's nearly impossible to leave the house in the morning. I'm not sure if this means I need a lower dose of the Linzess or maybe less Miralax - when I cut back on the Miralax I don't seem to go as much. I am going to experiment a little and see what happens, but I'm afraid to change too much since I am actually going. And because I'm taking way less Miralax than I used to, I have a lot fewer "unpleasant" feelings (cramping, bloating, etc. - that is still there but not as bad!).

I haven't had any other side effects from the Linzess. Other than the watery diarrhea, it has worked pretty well for me. I am always a little wary of taking a new drug, but I thought I would share a positive experience for those interested in taking this drug. I've also found that being able to go to the bathroom every day does seem to help my nausea (a little). My nausea seemed to get worse after not being able to go for several days.

Anyway, hope this helps! For reference purposes, the other drugs I take for my stomach issues are omeprazole 20mg (Prilosec), domperidone, and Zofran as needed.

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February 1, 2013 at 8:37 am

I tried the linzess for a few days and gave up, does it take a few weeks to work? Miralax just makes me bloated, unless I take tons of it, like a colonoscopy prep. I need the push aspect, like duccolax. But if linzess provides that, I would try it again. Mom works for me, but gives me a horrible migraine, unfortunately.


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February 2, 2013 at 6:24 am

I just take the Linzess same dosage - no Mirilax - and I am able to leave the house after about 2-3 watery bowel movement. I work full time and have no problem at work.

The goal for the Linzess was also to help my nausea and motility problems - and I take Zofran as well. I have domperidone, but I am scared to take it becasue of all the side effects I've read about.

I don't feel that I need Miralax with Linzess. It does the job!


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February 2, 2013 at 7:40 am

Thank you so much, one more question. Do you take the jlinzess in morning with no food or liquid 30 minutes prior to eating or drinking ? The pharmacy told me that. I would prefer not having to wait 30 min to have my coffee!!!!!


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February 2, 2013 at 7:53 am

yes, I felt like it took several days to work for me.

@ glad to hear Linzess is working well for you. It doesn't seem to work as well for me if I don't take Miralax as well - but I am taking much less than I used to, and going more, so that's good. I take domperidone and I have NO side effects at all from it. Maybe worth a try! It has helped me quite a bit.


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February 2, 2013 at 7:54 am

Yes, I take it at least 30 minutes before food. Maybe coffee would be okay, I am not sure. I drink a lot of water with it, so I know water is okay. I usually take Linzess and Prilosec, wait about 10-15 minutes, take my domperidone, then wait 30 minutes before eating. It's kind of a pain and I have to schedule around it, but it works.


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February 2, 2013 at 8:34 am

Thank you for info, I might give it another try!!!!!!!!!


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February 2, 2013 at 12:38 pm

I actually take the Linzess first thing in the morning and have my coffee within about 15 minutes. That has abosultely no impact on the effectiveness of the drug. It works just fine and I can't wait a full 30 minutes.


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February 2, 2013 at 3:08 pm

I tried Linzess for a fews days also and gave up - it did nothing. I don't have a week of being 'blocked' waiting for it to work. Miralax did nothing for me.

as))))), did your GI guy advise you to take Miralax with the new miracle drug Linzess? If so, why? I was under the impression that Linzess was supposed to be the latest and greatest (for me it is not) and would work without the other stuff.


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February 2, 2013 at 6:54 pm
 

@ when I first started taking it, my GI said I could try it without the Miralax. He was optimistic it might work on its own, but told me I might need to add Miralax back in. He said since it's a new drug, it's sort of unknown, a little. My GI gives me a little flexibility to adjust some of my doses (i.e., how much Miralax) as needed. Although I'm still taking Miralax, it is soooo much less than I used to have to take. I am slowly reducing my Miralax dose, as well - the last 2 days, I have taken about 3/4 of a dose instead of a whole dose. So for me, it has still helped me a lot.


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February 2, 2013 at 7:03 pm

I took it with my coffee and without--no difference...I've also taken it with food. I took it for 5 weeks and stopped a month ago. Previous to linzess I took Miralax and high doses of it.. I never took it with the Linzess and I still had the diarrhea...glad there are some people posting their positive feedback!


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February 3, 2013 at 4:30 am

Blocked - Before I statrted the Linzess, I did a total clean out - like if your were having a colonoscopy. My doctor at Clevland Clinic said that this must been done in order for the Linzess to take action. I did the entire bottle of Miralax. Got everthng out then started the Linzess. I think that this played an important role is getting it started and working.


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February 3, 2013 at 10:57 am

@ - I have a similar experience with the Linzess. Taking it alone doesn't seem to be super effective, unfortunately. I have added back in a little Miralax and it seems to do the trick. I still have some watery diarrhea most mornings, but generally that's better than not going at all. I did take the Linzess with my "normal" Miralax (way more than I take now), and I had many, many episodes of just water coming out (gross, sorry).

Right now I'm doing about 3/4 capful Miralax at night, and 290 mcg Linzess in the morning. I seem to alternate - every other day I will have a really productive "clean out" where I go probably 4-5x in the morning after I eat and drink. Usually only 1x of that is mostly water, and the rest is very loose. The alternating days I go just a little and have maybe 2-3x of mostly water. So, maybe it's not ideal, but it is so, so, so much better than not being able to go more than every 5-6 days (and having to take massive doses of Miralax to do so, and dealing with increased nausea, cramps, pain, etc). This isn't really ideal either, but it's an improvement.


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February 3, 2013 at 11:31 am

glad it is helping you. I tried it again, for me it is useless. I am going to try the solgar brand mag citrate tonight with sennacot and see how that does, who knows.


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February 5, 2013 at 1:04 pm

have magnesium levels checked if doing mag citrate or any drug with it in it. Mine was too high to take it.
Clean out before starting linzess? good advise..my doc gave me a script and said it would help opiod constipation. not for that!...I read the insert! what is wrong with these docs? Wish I lived closer to cleveland. several docs here couldn't find my tumor and I KNEW something was wrong. What if we had universal health care...a panel of docs who say where and when you can go to a doctor? I would have died with my tumor as docs were too stupid to FIND IT on the xray!!!!!! Cleveland clinic found it. Dr. Bhatt. a student!!!!!!! God bless them!


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February 5, 2013 at 2:08 pm

My hi doc said today to try the 290 dose 2x per day. Also it is ok with morning coffee just no food also can be taken with stimulants


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February 6, 2013 at 7:17 am

I'm been taking the Linzess for 5 days now and I'm not so impressed with this new drug. I still have to take the Miralax at night so I still have the bloating and everything that goes with that. Also, take my dose of Amitiza at night. So now I have the same problems and have to go to work feeling miserable. This combination works very little. It takes up to 4 hours before anything happens.

I was taking zelnorm which is hard to find and very expensive. I believe I will go back to taking that.

Do you need to take Linzess for weeks before it works?


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February 6, 2013 at 7:33 am

"Do you need to take Linzess for weeks before it works?"

Hah, that's the $64,000 question! From most accounts here, it seems the answer is yes. Some have had success in a week, me I didn't give it more than two days, since I want it to work out of the box, like Viagra for men.

As they say on the Internet, YMMV.

Maybe the next great pill................................................

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End

By Match >> So, I guess there are people who have taken Linzess, and not had much diarrhea trouble.


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## Barbara Griffin (Mar 30, 2013)

I'm going to stop taking Linzess until after my colonoscopy Monday. Might ask for Amitiza to try; or just leave it alone if there is nothing found (this will be my third one, other two were normal). Anyway, it's helpful to see I'm not alone!


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