Feedback on Linzess for Irritable Bowel-C or Chronic Constipation

Posted by sue225 @sue225, Mar 9, 2019

I have both of the above-conditions. Took Linzess, (called Constella in Canada) and got terrible stomach pain. Feeling desperate and thinking about trying it one more time. Interested in hearing what kind of experiences other people have had with linaclotide/linzess.

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Profile picture for denisep @denisep

Hello. I am glad to hear Linzess works or you. Sounds like it actually works too well. I have had IBS-C all my life. I started taking Linzess about 5-6 years ago. It worked great in in the beginning but eventually, my system got used to it and became no longer effective. Medications usually don't work for me so now my doctor prescribes them together with others. Right now I am on Trulance, Motegrity and Linzess all together. They don't always result in a BM, but when they do I am happy.
I hope you feel better and find the right treatment to deal with your IBS-C

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@denisep I know this a pretty old thread, but what are you currently taking?

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Profile picture for wch1017 @wch1017

@denisep I know this a pretty old thread, but what are you currently taking?

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@wch1017 - welcome to Mayo Clinic Connect.

Do you also have IBS-C? Are you currently taking medication for constipation?

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I was on Linzess for about 14 months. Many mornings of major diarrhea and unpredictable at times major incidents requiring clothes changes etc. I have had success w/ Visceral massage, some pelvic floor training, metamucil.

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Profile picture for Lisa Lucier, Moderator @lisalucier

@wch1017 - welcome to Mayo Clinic Connect.

Do you also have IBS-C? Are you currently taking medication for constipation?

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@lisalucier yes and Linzess

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I, too, had great expectations for Linzess. I took 72 mg as directed it worked every day— forceful watery diarrhea— in the morning hrs; it was unpredictable as to how many times i would use the b r. Over time it became less consistent. It did not work for 5 days straight. I became quite frustrated and stopped it. I felt sooo much better physically and emotionally. Linzess was not for me; had it worked more than ince a day, i would have continued Im currently relying on Senna but am asking dr for motegrity with high hopes for gut motility and elimination

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Profile picture for schuljoa1 @schuljoa1

I was on Linzess for about 14 months. Many mornings of major diarrhea and unpredictable at times major incidents requiring clothes changes etc. I have had success w/ Visceral massage, some pelvic floor training, metamucil.

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@schuljoa1 i did not last but 4 months for the reasons you named; i felt so much better emotionally and physically when i stopped it.
Senna works for me but i realize it is not designed for long term. Since motility is a problem, im asking my gastro for motegrity Are you familiar with it?

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Profile picture for denisep @denisep

Hello. I am glad to hear Linzess works or you. Sounds like it actually works too well. I have had IBS-C all my life. I started taking Linzess about 5-6 years ago. It worked great in in the beginning but eventually, my system got used to it and became no longer effective. Medications usually don't work for me so now my doctor prescribes them together with others. Right now I am on Trulance, Motegrity and Linzess all together. They don't always result in a BM, but when they do I am happy.
I hope you feel better and find the right treatment to deal with your IBS-C

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@denisep i became very frustrated and anxious with Linzess and stopped taking it after 4-5 months. It became less predictable and effective, preventing my plans each dsy. Im taking senna often with results but i would like to try motegrity since i have slow gut motility
I did try massage and it was not effective. Osmotics are disastrous also. Your experience with motegrity?

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After nearly a year on Linzess starting with the lowest and ending up with the highest dose, there was no discernible effect. I took it upon waking with two glasses of water before eating or drinking coffee. Two weeks ago I took myself off of it (after checking no gradual approach required) and there is no difference at all.
I have been diagnosed with IBS, silent reflux, and believe I have total GI slow transit.
I wonder if Linzess affected electrolyte balance. I have been diagnosed with hypotension/low blood pressure and instructed to increase my salt intake, electrolytes, and be sure to hydrate. After a week of doing that, it may be a coincidence but I feel better and less fatigue.
My general practitioner has ordered Prucalapride/Motegrity so we will see.

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Profile picture for cezanne @cezanne

After nearly a year on Linzess starting with the lowest and ending up with the highest dose, there was no discernible effect. I took it upon waking with two glasses of water before eating or drinking coffee. Two weeks ago I took myself off of it (after checking no gradual approach required) and there is no difference at all.
I have been diagnosed with IBS, silent reflux, and believe I have total GI slow transit.
I wonder if Linzess affected electrolyte balance. I have been diagnosed with hypotension/low blood pressure and instructed to increase my salt intake, electrolytes, and be sure to hydrate. After a week of doing that, it may be a coincidence but I feel better and less fatigue.
My general practitioner has ordered Prucalapride/Motegrity so we will see.

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@cezanne My story is not unlike yours. Linzess doesn't work for everyone. Hopefully prucalopride will be better for you.

I have pathologically slow transit due in large part to dysautonomia. I recently took a breath test that my GI doctor ordered and I tested positive for intestinal methanogen overgrowth (IMO). Slow transit creates the opportunity for IMO, and in turn the methane produced in the gut as a result is known to slow transit even more. It can be a vicious cycle.

Consider asking your doctor if a breath test would be appropriate. Mark Pimentel, MD, at Cedars-Sinea is leading the research on small intestinal overgrowths and has said that in many cases IBS-C is actually a manifestation of IMO.

BTW, I haven't noticed that Linzess significantly altered my electrolyte balance.

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Linzess didn't work for me and actually made me sick.. I'm on Trulance and it was working great.. 3-4 Bristol stool chart #4 daily ..occasional Miralax.. until July 23 when the allergist gave me a Xolair injection for CSU ( Chronic Spontaneous Uticaria).. have been to ER 3 times since for constipation and just had a colonoscopy..( quite upset wrecked my life.. 6 1/2 years of "gut work" wrecked..and now I'm sitting here stressed just hoping it will work again..I've also tried Amtisia and it didn't work . so the DR said .. out of options..I'm going to ask about Motility.. today! ) But I tried Linzess years ago and it made me sick and also about 2 years ago..and i t didn't work!

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