My experience with Linzess

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.

Thanks all! I don't read much on this site because it tends to make me really depressed about my condition.

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I have not had good luck with linzess.....far from it....causes me to become very dehydrated and I end up in the e r with dizziness and dehydration. Also it does not work for me. My G I doctor now recommends a total clean out first and to eat a bit of fat at the meal. I don't like this med and am disappointed.
Leighsy

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leighsy: I'm kid of astounded at your apparent contradiction , but perhaps I'm missing the intent you are expressing . How do you become dehydrated if the drug is not working ? You make no mention of "watery stools" that many report , so the only other reason would be an overly active bladder . Have you checked your blood sugar levels and your blood pressure ? Are you taling any kind of "supplements" your doctor doesn't know about ? There are herbs and certain vitamins that may increase their activity when combined with Linzess . What did the ER doctor say about your dizziness and dehydration ? There are alot of things to consider before ruling out Linzess . It sounds like your symptoms need further investigation . budlongpal

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linzess is not the drug for me...all I do is bloat with fluid and become dehydrated

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What bundlongpal is trying to say is that bloating with fluid and dehydration are complete opposites, you either have one and not the other but they don't go together.

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Hi! I had to switch from Amitiza to Linzess because the Amitiza caused me to have increased migraines. I can't take the Linzess on days that I am not going to be home in the morning as it can cause diarrhea for hours sometimes. Today, I took it and had 5 or 6 "good, regular" BMs then the diarrhea hit! My GI told me to take a dose of Miralax (in warm prune juice!) in the morning and the night if I know I won't be home the next day to take the Linzess. So far I have not had any side effects from the Linzess. It did not affect my migraines like the Amitiza.

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Kaysus, I had to stop taking the Amitiza, it was causing rapid heart rate, low blood pressure and shortness of breath. I use Linzess but a whole capsule is too strong so I open the capsule and do half the content and that seems to work fine.

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Just signed off Amitiza for hopefully the last time. Kept a record, in case you are interested. At NO time, btw, was I (sorry for TMI) fully evacuated. Took 2 24mcg pills a day for 18 days:

12 days of minimal (and I do mean barely there) results.
5 days of zero, zip, nada, bupkus.

Back to Dulcolax until I see yet another GI at the end of the month. Stay tuned for more TMI posts.

Any doctors reading here? You're not doing your jobs.

This all reminds me of the days before I was callously and incompetently given a hysterectomy without my knowledge. At NO time did I find a competent doctor before going under the knife. Look out for yourselves, folks, we're on our own.

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Correction:

12 days barely there.
6 days of nothing.

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Hi, I'm curious how much water you intake daily?? Your regime sounds like something I might add to help myself, however fiber makes me bloat like a blowfish.. And I worry about how much water I need. I drink as much as I can but its still most likely not enough. Help!!

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I'm sure I'm in the minority with Linzess, but it started working for me within hours (and has continued since, about four months now). There was no period of waiting for it to 'kick in', in fact, my first does (2 X 290mcg) produced almost immediate results.

My guess would be that if it doesn't work right away, your problem isn't one that Linzess will solve.

rogerlig

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linzess is working for me, but with 4-5 tabs of senna. I take 1 290mcg in am. I did not know you could take 2 of the 290mcg, which is 580mcg????? It is not recommended on label, did your dr prescribe the double dose???? It does not dehydrate you? for me the one cap kicks in anywhere from 1/2 hour up to 3hours, but it does give me great relief. by itself, it did not work, but maybe I can do the double dose. I did not know that the double dose was safe or not?

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kavita: Have you tried "weaning" yourself off of the Senna , slowly reducing the amount of Senna you take and hopefully , get down to one Linzess 290 mcg , I have predictable results within 2 hrs after taking it . I still have some bloating but I'm sure it's just tissue reaction as it's becoming less . budlongpal

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@kavita: the double dose was a one-time, 'get started' thing. By four hours later, I had pretty much lost bowel control :-) So from that point forward, a single 290mcg dose was all I needed. I think I was the docs first 'trial' of the drug, so he wasn't sure how effective it would be. Plus, he's kind of an 'over-prescriber' kind of guy, by nature.

Hey, if one is good, two must be better, by his standards.

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So yesterday I had taken my 290 mg dose in the am and then another before bed, in between tried 2 suppositories with still nothing moving.. Today is my 4th day with this med, stopped by the pharmacy to ask if she thought adding miralax and fibercon would help things along, she suggested I wait. Keep in mind I have been addicted to ex lax for over 10 years, I'm not bloated or uncomfortable as if today, however I am frustrated and concerned, I know I have a long road ahead of me but honestly does anyone anywhere have a clue to a starting point, beyond disgusted that the medical field can't seem to help!!

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it is clean out time maybe? When nothing seems to help me I do about 7 doses of miralax mixed in with gatorade. Usually does the trick to clean everything out, or you can always do more. A colon prep is 14 doses. Or you could try the citroma magnesium citrate bottle which is in drugstores. Sometimes it takes a long time for that to kick in. But it should clean you out. Then maybe after that try linzess by itself, give it a few days, or combine it with a stimulant if you have to. After a clean out, be aware depending on your individual motility rate it could be three days before you have much stool to empty. If I try a new "regime" I always make sure I am not very constipated, because I think it is hard to expect some things to work well, if everything is so blocked and dried out. Hope this helps

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Thank you for your advice! Few more questions .. 7 cap fulls of miralax at once?? Did it make you feel sick?? Ya know cramps, nausea. Etc?? And should i check with my dr. First or just go for it, her last words were if the linzess doesn't work try miralax with the ex lax. She's clearly not getting that my body can no longer handle the laxatives as I am sitting on the toilet while empting out one end with a barrel on my lap empting out from the other end.. Not pleasant! Not much faith in her guidance!!

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Yes 7 doses, or you can even do more, like I said 14 caps is a colon prep. You want to mix the 7 doses into a pitcher with about 32 ounces or so of Gatorade. Gatorade is important to keep you hydrated and replace electrolytes. You can drink 8 a glass every 15 to 20 minutes until gone. Also if you want to add duccolax, take the duccolax 2 hours before you drink the Gatorade,. You can look up the miralax colon prep. This is the same thing, but half the dose of that. This should clean you out enough, without extreme diarrhea, but it just depends on you. If you want to do 8 9 or 10' it is still safe. 14 for sure is extreme and is diarrhea extreme, as the colon must be clean for colonoscopy. Miralax is peg, it is used for colon preps, just the smaller dose is considered day to day laxative dose. Good luck. The last time I needed to do this was after my latest defecogram, I wanted to make sure no barium was left inside me.

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Thank you so much!! You've been very helpful and I appreciate you taking the time to get back to me:)

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sotiredofthis, as Meatloaf says, you took the words right out of my mouth.

Especially these words:

"still nothing moving.." ---------------------- NOT A PEEP!!!!!!!!!!!!

and these:

"Today is my 4th day with this med," ------------- been on it a week, that's it, I'm done.

"I am frustrated and concerned," ------------ I'm disgusted and angry, but hey, at least the GI gave me permission to keep using Dulcolax, which so far still works. When it doesn't? I'm in trouble.

"honestly does anyone anywhere have a clue to a starting point,"------------------- would that we did, other than helping each other best we can on this forum.

"beyond disgusted that the medical field can't seem to help!!"------------------ ain't it a *****? I hope they read here, but they don't care, so they won't.

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My Doc put me on Lizness about 3 weeks ago as well same dose as you, however, he has me taking it every other day as he says that it can backfire and cause the opposite including urgency and possible loss of control if you don't make it to the bathroom. Since you are experimenting I would try that for a few days and see if it helps. It has helped me and I have Gastroparesis, IBS-C, Hereditary Chronic Pancreatitis (with tumor and other GI issues) Diabetes Type 1 brittle, and other things GI related. If you want to talk feel free to message me as I haven't met anyone else on Lizness as of yet.

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