# Skipping doses of Linzess?



## Displaced (Feb 14, 2007)

I've been on Linzess 72 mcg for about 6 months. I have diarrhea about 2/3 to 3/4 of the days, usually multiple times a day. I often feel miserable all day, even after the worst of it is over. I saw a primary care doctor the other day, a new one because I had changed insurance plans, so I had to spend a lot of time on my medical history, including IBS and the effects of the drug. When I told him how often I had diarrhea, and how intensively, he seemed shocked and advised me to consider cutting back. I'm thinking about a schedule of two days on, one day off, rather than every other day. I was on an every other day schedule recently while on a vacation, and while I never had diarrhea, which was the point of skipping doses, it didn't take long before I was uncomfortably backed up. That's why I think that my 2-1 plan might work better. I would really be grateful if I didn't have to constantly worry about the side effects. Even a few more days when I'm not running to the bathroom or nauseated the rest of the time would be welcome. I might consider a small dose of Miralax on the off days, perhaps 1/2 to 1 tbs, just to try to help keep things moving. Anyone else getting by OK without taking Linzess every day?


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## sjw596 (Feb 19, 2014)

Everyone's different, and I had taken Linzess daily for about 1.5 years, ending with the 290 mcg dose. I had great success for >1 year, and then it stopped working, somewhat abruptly. From what I understand, Linzess is designed to work soon after taking and does not remain in the body for any appreciable length of time. My guess is that you'll have similar results on whatever day you take it, but who knows? Maybe you'll adjust. Perhaps ask your doc about Amitiza or Trulance.


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## flossy (Dec 8, 2012)

sjw596 said:


> Everyone's different, and I had taken Linzess daily for about 1.5 years, ending with the 290 mcg dose. I had great success for >1 year, and then it stopped working, somewhat abruptly. From what I understand, Linzess is designed to work soon after taking and does not remain in the body for any appreciable length of time. My guess is that you'll have similar results on whatever day you take it, but who knows? Maybe you'll adjust. Perhaps ask your doc about Amitiza or Trulance.


I have heard that "after a year it stopped working" comment here many, many times in regards to Linzess.


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## sjw596 (Feb 19, 2014)

flossy said:


> I have heard that "after a year it stopped working" comment here many, many times in regards to Linzess.


Yes, and you've heard it from me more than once!







Not to hijack this thread, but I've also mentioned my failure with Amitiza, though it never even began to work. I've been on Trulance for about six months with good results, but I'd give it a score of 7 on a 10-point scale. I'm considering trying Dr. Schulze's #1 as an adjunct, which you've recommended (and which may be worth a try for the OP). It's also recommended highly on Amazon by actual purchasers. I do have a concern, which I asked the makers: Is it advisable to use it every day or even frequently, as it does contain stimulant laxatives (aloe & senna), albeit natural. My GI said it's fine to supplement my Trulance as I consume an abudance of liquids, and I do supplement with Miralax or Benefiber.


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## Displaced (Feb 14, 2007)

I was on Amitiza several years ago and never had side effects like I have with Linzess. Unfortunately, it stopped working after a couple of months. So far Linzess is "working," if only in the sense that it triggers activity, even if that means horrible, frequent diarrhea. I just can't stand this much longer and may end up going back to Miralax. I never managed to achieve an ongoing balance between being somewhat constipated and having diarrhea, but I had a lot more "good days" and fewer "bad days" than I have now. I'll give the skipped dose strategy a try for a reasonable amount of time. I've emailed my GI doctor asking for his opinion but have yet to get a response. I wonder if the pharmaceutical company is working on an even lower dose of Linzess? Maybe that would reduce the side effects. I may just be one of those unlucky people who can't tolerate this drug. I hasn't always been quite this bad, so I'm not sure what else is going on. As a result a visit to a primary care doctor and getting blood tests, I now need to be tested for thyroid problems and to increase my intake of several vitamins. These could all be factors in my ongoing GI problems as well.


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## annie7 (Aug 16, 2002)

why don't you give trulance a try. i've read a lot of success stories about it. it's supposed to cause less D than linzess.


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## sjw596 (Feb 19, 2014)

annie7 said:


> why don't you give trulance a try. i've read a lot of success stories about it. it's supposed to causer less D than linzess.


Like for me, as noted above. On the other hand, I'd say that Linzess produced looser stools than Trulance. Just goes to show how different we are. After being in the hospital for a couple of days last month with what the ER doc thought was a perforated colon (it was not - false reading of CT - just a bad stomach ache), the surgeon insisted that I be on a liquid diet for a couple days followed by low fiber for a week. That destroyed the effectiveness of Trulance for some reason, though it's coming back somewhat after 2 weeks. So, I can't say whether or how long Trulance's effectiveness will continue. I'm supplementing with Miralax. I had added extra fiber (Citrucel), but I eat a high fiber/low fat diet anyway, and I'm getting concerned that too much fiber has the opposite effect.

There's a good read on fiber for CIC here: "https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435786/." My regular doc and GI have insisted that it is impossible to consume too much fiber and to continue my ways...I have some doubts.


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## annie7 (Aug 16, 2002)

yes, that's a great article. i've read it before. print it out and show it to your docs, lol...

years ago, my first doc told me to "eat more fiber"--he wanted me to eat 40 grams of the stuff a day. omg!! with my slow transit, that just backed me up all the more. i found that i did much better on a diet lower in fiber.


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## sjw596 (Feb 19, 2014)

Some time back, I "passed" the transit test, though the GI said that I have bowel dysfunction. On day of my ER visit and the day before, I had complete BMs, or so I thought. I did not at all feel constipated. Yet, the hospital x-ray and CT scan showed a "substantial" amount of stool in my system. This concerned me as it seemed impossible. The surgeon said that I may just pack around a lot of stool as I have a tortuous/redundant colon, even after a losing a foot a few years ago. Yet, he said that it's not a good thing and is apt to cause problems later.


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## annie7 (Aug 16, 2002)

i failed both of my transit tests. i didn't pass any of the markers, so the gastro doc said i had colonic inertia as well as pelvic floor dysfunction, since quite a few of the markers were stuck in the rectum. the rest were scattered throughout the colon.

https://www.sitzmarks.com/how-to-interpret

if your GI said you had bowel dysfunction, it sounds like maybe some of the markers were still in there? did you doc give you a copy of your xrays/test results?

and yes, i had a redundant colon also. i had half of it removed--a right hemicolectomdue to a cecal volvulus but even with half of it gone, i still had slow colonic transit and still had to take laxatives in order to go..


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## sjw596 (Feb 19, 2014)

I just dug out the results. On Day 6, they found 3 markers left. One was in the left hemi-abdomen, and 2 projected over the rectum. My amateur reading of that result is that I was normal with respect to transit. At least that's what the GI's PA also said.


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## annie7 (Aug 16, 2002)

yes, that's what it sounds like.


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## Displaced (Feb 14, 2007)

It's too soon to say how well my every other day strategy will work. It's only been about a week. I assume that I will have diarrhea on the days I take the pill, but if I can have roughly an equal number of days when it's very unlikely, that would do a lot for my peace of mind. Worrying every day about whether the drug will cause diarrhea and how severe it will be unquestionably raises my stress level, which probably in turn just makes the IBS worse. I will consider asking my doctor about Trulance. The only time I've seen him (I changed insurance plans at the first of the year and had to choose a bunch of new doctors), we talked for quite a while about my IBS and use of Linzess, but he never brought up the other drug.


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## Displaced (Feb 14, 2007)

I started this routine of skipping doses of Linzess about three weeks ago; my approach is usually to take it every other day, although sometimes I skip two days in a row if there's something unusual in my schedule. I'd rather not do that, but sometimes I feel it's necessary. I still have the usual issues with diarrhea multiple times on most of the days I take the drug, and generally nothing happens on the off days (if I do have a bowel movement, it's "normal.') I wouldn't say this arrangement is working perfectly, since I still have days when I'm not quite sure what's going on. Today, for example, I took the drug and had diarrhea several times starting right after breakfast, but I still feel like I'm not emptied out despite a gap of several hours since the morning outburst, which would seem to suggest the drug is done working for now. And although I generally feel fine on the off days, especially having more peace of mind since I'm free of the stress of worrying about what might happen, there are also days when I feel kind of uncomfortable and am actually eager for the next day so that I can take the pill and deal with whatever's building up. On the whole, for now I will continue skipping either every other day or every two days. I don't want the dark cloud of frequent diarrhea and the feeling of being trapped in the house to be an every day experience. I lived with that for too long, and I can't cope with it any more.


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## wgbutler (Mar 15, 2018)

Displaced said:


> I started this routine of skipping doses of Linzess about three weeks ago; my approach is usually to take it every other day, although sometimes I skip two days in a row if there's something unusual in my schedule. I'd rather not do that, but sometimes I feel it's necessary. I still have the usual issues with diarrhea multiple times on most of the days I take the drug, and generally nothing happens on the off days (if I do have a bowel movement, it's "normal.') I wouldn't say this arrangement is working perfectly, since I still have days when I'm not quite sure what's going on. Today, for example, I took the drug and had diarrhea several times starting right after breakfast, but I still feel like I'm not emptied out despite a gap of several hours since the morning outburst, which would seem to suggest the drug is done working for now. And although I generally feel fine on the off days, especially having more peace of mind since I'm free of the stress of worrying about what might happen, there are also days when I feel kind of uncomfortable and am actually eager for the next day so that I can take the pill and deal with whatever's building up. On the whole, for now I will continue skipping either every other day or every two days. I don't want the dark cloud of frequent diarrhea and the feeling of being trapped in the house to be an every day experience. I lived with that for too long, and I can't cope with it any more.


I just take Linzess as a last resort medicine. I got the prescription for the 72mg back in December and I just finished my first bottle of 30 yesterday. I try to use Magnesium, high dose Vitamin C, (and now Dr. Sculze IF) and Metamucil to go and only take Linzess if all else fails.

I rarely ever feel "emptied out". It's very frustrating.

When I do take Linzess I try to take very early in the morning (no later than 5:30AM) so that it will be mostly out of my system by the time I go to work.


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## Displaced (Feb 14, 2007)

I've been skipping doses a few times a week for about a month. My IBS is as unpredictable as ever. On days when I take the drug, I often have diarrhea multiple times, as always, although I recently took the drug every day for over a week because that wasn't happening, and on some days there was no activity at all (which is the objective, but I got worried when that persisted too long), to the point where I supplemented a few times with Miralax. The LInzess has come roaring back into action the last few days, giving me horrible diarrhea on the days I take the pill and making me again ponder stopping it altogether. For the most part I'm OK on the days when I skip a dose, although often by the evening I start feeling uncomfortable, as if just one day off of the cycle could cause a significant back-up when before I developed IBS, I did not have bowel movements everyday-which of course is perfectly normal-and didn't have any problems as a result of it. Can you become "addicted" to Linzess, either in the sense that your body depends on it or because, psychologically, you think you need it? I'm very ready to consider other options.


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## annie7 (Aug 16, 2002)

no, you cannot become physically addicted to linzess. psychologically would depend on the person, i think.

yes, there are other options. there's trulance. and amitiza. there's also various laxatives. and prucaopride should be available by the end of this year or the beginning of next.

http://www.ibsgroup.org/forums/topic/348977-fda-accepts-new-drug-application-for-prucalopride-for-cic/

good luck.


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## sjw596 (Feb 19, 2014)

Correct. I'm on my third (Trulance) of the three, new generation drugs. As I understand things based on discussions with my GI and research (I'm not a medical professional-talk to your doc), you can take any of those drugs indefinitely. They're not addictive in the chemical sense. They're meant to be taken daily; if you skip a day, you're more likely to simply not have a BM on that day. However, we CIC sufferers are "addicted" to extra means of some kind to keep us "going." Also acceptable for indefinite use are osmotic laxatives like Miralax and Milk of Magnesia as well as any of the fiber supplements. What's not okay are stimulant laxatives, e.g., Ex-lax and other stimulants, including so-called natural remedies. Beware of these natural products and read the ingredients. Things like senna and aloe are stimulants. They are not for long term, daily use and can cause physical damage to your colon. I think that, if you're having success with these "all-natural" products, it's from the aloe, senna, and other stimulants they may contain. My Linzess worked well for about 1.5 years. Trulance had been working well for about 6 months, but its effectiveness seems to be diminishing. I won't be surprised to be among the first candidates for prucalopride.


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## flossy (Dec 8, 2012)

sjw596 said:


> Correct. I'm on my third (Trulance) of the three, new generation drugs. As I understand things based on discussions with my GI and research (I'm not a medical professional-talk to your doc), you can take any of those drugs indefinitely. They're not addictive in the chemical sense. They're meant to be taken daily; if you skip a day, you're more likely to simply not have a BM on that day. However, we CIC sufferers are "addicted" to extra means of some kind to keep us "going." Also acceptable for indefinite use are osmotic laxatives like Miralax and Milk of Magnesia as well as any of the fiber supplements. What's not okay are stimulant laxatives, e.g., Ex-lax and other stimulants, including so-called natural remedies. Beware of these natural products and read the ingredients. Things like senna and aloe are stimulants. They are not for long term, daily use and can cause physical damage to your colon. I think that, if you're having success with these "all-natural" products, it's from the aloe, senna, and other stimulants they may contain. My Linzess worked well for about 1.5 years. Trulance had been working well for about 6 months, but its effectiveness seems to be diminishing. I won't be surprised to be among the first candidates for prucalopride.


I have been taking I.F. # 1 and aloe gels for over 3 years now, with no problems whatsoever. I find it very odd those of you who prefer prescription meds for your constipation woes over natural remedies because you think the latter may be bad for you.

Why?

The fact of the matter is doctors sometimes gets perks from pharmaceutical manufactures for writing prescriptions, especially name-brand drugs that are not yet generic. They obviously make more money on them. It's all big business. One hand feeds the other. And it's in Big Pharma's best interest to pimp their products while promoting the 'dangers' of natural products. (BTW, there is no studies of the long-term effects of Linzess.)

We now live in a society where natural is bad, pharmaceutical is good.

IMHO? Be aware of Big Pharma, not all natural products. It certainly seems to me they've got some of you bamboozled.

BTW, I'm someone who worked for Big Pharma for almost 5 years (great job, BTW). And my cousin has been a pharmaceutical rep on and off for the last 25 years or so, give or take. I see how the game is played, first hand.

But of course you can believe what you want to.

P.S. Just wanted to add this: If prescription meds work well? I have no problem using them. I'll go on record saying if I could take something, either natural or pharmaceutical, and have normal intestinal flow & BM's for five years, then afterwards I'm guaranteed to drop dead? I'd take it. That's how much I miss being normal, but that's just me. Oh, those were the days.


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## sjw596 (Feb 19, 2014)

I won't/can't defend so-called Big Pharma. I'm just pointing out that natural or not, senna and aloe are stimulant laxatives and sound medical advice is that one should not consume any form of stimulant laxative daily for extended periods. IF #1 contains those stimulant laxatives and, I submit, should be used in consideration of that fact. Even if IF #1 works well, it contains stimulants, and natural stimulants require no less caution than chemical ones. I actually eat a healthy diet and strive to adhere to natural foods including organics and non-gmo products. I include natural fiber supplements, e.g., inulin and psyllium, and live on whole grains over processed ones almost entirely. I'd be amazed if anyone could "bamboozle" me when it comes to health aids. As I suggested, discuss the ingredients with a doctor for her opinion.


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## Displaced (Feb 14, 2007)

I began this topic, and I'm glad to see so much discussion. I don't regularly skip doses any more because I felt that routine wasn't working, but on the other hand, I'm also miserable when I do take it every day, although not every day is equally awful--there is some variation. I'm currently on a vacation and skipped the pill the day I flew to my destination (diarrhea and a long plane flight, no thanks) but have taken it every day since. I seem to be in a particularly bad phase, experiencing not only the usual nasty morning diarrhea but, the rest of the day, constipation! The drug does its thing in the morning, and my body won't cooperate the rest of the day. I've also had trouble sleeping because of GI discomfort. Some of this might be attributable to the vacation: different time zone, different altitude, different foods, etc. Also, I have recently been diagnosed with Graves disease, a thyroid condition, which also has some effects on the GI system, and that adds a new wrinkle to an already challenging situation. I'll be seeing the endocrinologist soon for a first follow-up visit after treatment and will be asking a lot of questions. Then once I've seen her I need to see the GI doctor to discuss not only alternatives to Linzess but his take on managing IBS now that I also have the thyroid problem.


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