# New lower dose of Linzess



## Displaced (Feb 14, 2007)

I took LInzess briefly about three years ago (I don't remember the strength) and very quickly abandoned it because of severe diarrhea. I've turned down suggestions from doctors that I try it again until recently, when I was told there was a new, lower dose (72 mcg). After receiving some samples a few weeks ago, I postponed trying it until recently. After the first dose, I had diarrhea twice in the morning, then was fine the rest of the day. I had trouble sleeping that night (unfortunately not a one-time experience due to a long history with IBS and nocturnal rumblings, churning, etc) but wasn't sure if it was due to the Linzess. I gave it another try a few days later and had diarrhea once in the morning. I felt kind of queasy all day but was OK until after dinner, when I had diarrhea again. I thought it might be in part due to the unwise choice of a cheeseburger, fries, and glass of wine for dinner on a day when my stomach wasn't on its best behavior, but it could also have been the Linzess. That night I had a lot of discomfort and probably only two or three hours of sleep. I've had trouble sleeping several more nights since then although I haven't taken any more Linzess. At least two nights I've also had significant abdominal throbbing or pulsation keeping me awake. That happened last night, and today I've had two or three bowel movements, which seemed to have finally relieved that sensation. Since I'm also experimenting with IBgard peppermint oil, recommended by the same doctor who prescribed the Linzess, I'm not sure if either or both is behind this latest flare-up. I don't want to seem like a non-compliant patient, but already I'm seriously considering stopping both the Linzess and the peppermint oil. For now, I think I'll stop the peppermint and give Linzess one or two more chances, several days apart, so I'll have more experiences on which to base a decision.

Anyone else tried the new dose? I know that the response to Linzess or any medication varies widely; what may be a very effective product for one person is a disaster or just doesn't do anything for other people. I'm just upset because I've tried so many things and recently switched doctors hoping for new ideas, but I'm no better off and possibly ever having more problems. My previous GI doctor was a big fan of Miralax, and I was hoping to find something better. But based on my preliminary experience with the new doctor's recommendations, I may be going back to the Miralax. I had my share of problems with that, but maybe it's marginally better. Sigh. I also need to work on my obsession with this IBS, since having that on my mind frequently clearly raises my stress factor and probably worsens the symptoms.


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## annie7 (Aug 16, 2002)

one thing about linzess--and i've mentioned this on the board before so maybe you've already read it but-----one of my gastro docs has done research and has run clinical trials on linzess. he told me that linzess works on the same receptors that food does. so generally, the closer you take it to eating a meal, the more diarrhea you get. and conversely, the more time that elapses between taking linzess and eating, the less D you get. it's all in experimenting and finding out what works best for you.

so if you're getting too much D try taking it an hour before breakfast instead of a half hour before as prescribed. you'll probably have less D that way. some people take at even two hours before eating or at night, on an empty stomach, before they go to bed.

good luck with everything. take care.


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## Displaced (Feb 14, 2007)

Thanks. I often get up early to feed cats, then go back to bed for an hour or more, so I take the Linzess the first time I'm up. Diarrhea, if it isn't too bad, I can probably cope with as long as i stay home and close to a bathroom. It's the crazy symptoms like the abdominal throbbing, things that keep me awake half the night, and if it lasts more than one night, significantly impact my daytime performance, that are problematic. I will give Linzess at least a few more tries so that I can see if there's a pattern of results and side effects and decide where the balance falls. I felt fine today, and I dread messing it up by taking this medication again! I hope that's not a self-fulfilling prophecy.


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## Displaced (Feb 14, 2007)

It's been a week or so since I first posted on the low-dose Linzess, and I'm as confused as ever. Three of the first four times I used it (several days between each dose, always at least an hour before breakfast), I had diarrhea, maybe just once shortly after breakfast, maybe twice. I also had a day when I had diarrhea first then later in the day, solid, "normal" stools. Today, in contrast, I've had cramps, moderate pain, and several of what I call "bits and pieces" BMs. This is completely unlike the other experiences. I'm trying to identify a pattern to help me determine if I should continue using this, and although there was certainly a trend toward having diarrhea, although not severe, it looks like that's not always going to be the case. While I'm OK with some variability and can cope with occasional, moderate diarrhea since I'm self-employed and work at home, I don't want "surprises," and also don't think Linzess would be a good idea if I'm planning to spend a lot of time outdoors, particularly hiking in remote areas where I could literally be miles from even a "porta-potty" facility. At the moment, my plan is to use my remaining samples (three more tablets) then decide whether I want to fill the prescription and continue taking this. I was feeling like this might be something I could live with, even if it wasn't ideal, but now I'm not so sure.


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## weirswalker (Jun 29, 2017)

The first prescription I got was the 290 and it was way too strong. The dr have me the 145. That was too strong so he said to break the capsules and take half. I found that to be too hard so I quit and went back to my old remedies, and I still suffer. I am wondering seriously if I should go back to opening the capsules by experiment with how much I take..maybe 1/3 or 1/4...these are TNT amounts but what the heck ? I seem to have little to lose...


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## weirswalker (Jun 29, 2017)

Sorry for typos..I meant that those are tiny amounts , you could practically count the tiny balls inside..but I'm going to try it. I have plenty and nothing else works. I'm going to buy some empty capsules and a magnifying glass on a stand..


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## annie7 (Aug 16, 2002)

linzess is also now available in 72 mcg doses.

and yes, i have heard of people who do split the capsules. linzess is a very unstable med and highly susceptible to humidity, so you want to keep this in mind when you do it but it can work.

good luck!


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## TMM388 (Nov 17, 2010)

I take the new lower 72 mcg dose and it works well for me. There are some times where it doesn't work as well and I wonder, maybe I should go back to the 145 mcg, but I find that the 72 will always work but sometimes it'll take 5 hours. So what I mean to say is that for me, Linzess is usually predictable at around 2 hours after I take it, however if things are a bit more stubborn and I take the lower dose, it'll work gentler and even if it doesn't work in the 2 hour range, it'll surely work around the 5 hour mark. That is just my experience. I also started taking it at least 45 min before eating but sometimes even 1 - 1.5 hours before eating and I find that this helps the response be not so extreme, not so much watery diarrhea. I have seen others post about Linzess here saying they experiment in different ways and I have found that the best scenario for me is 1 hr before eating, 72 mcg, even though that's not exactly the instructions.


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## Displaced (Feb 14, 2007)

I finally filled my Linzess prescription after using sample doses off and on for a couple of weeks with very mixed results. I was taking it every few days, not regularly, because I initially had decent results and didn't want to overdo it. I've taken the pill the last four days, an hour or two before breakfast, and had some bowel activity every day, although for the first day or two it's hard to say if it was directly because of the pill or something "already in the works." This morning I was hit with severe, watery diarrhea immediately after breakfast. I know diarrhea is a common symptom with this drug, and I suppose I shouldn't jump the gun and discontinue the medication based on one very unpleasant experience. I had really bad diarrhea one day-the worst in years-while I was still using the sample pills, although curiously it had been several days since my last dose. Therefore, I don't know if it was a delayed reaction or unrelated.

Is there any "normal" time frame for letting your body adjust to this? A couple of weeks perhaps? I was planning on going camping in a few days, and the last thing I need while I'm on a trail several miles from a restroom is for my GI system to go haywire! I"m also planning a vacation later in the summer in which I'll be outdoors much of the time. I'd like to have determined by then whether Linzess helps without tilting me way too far in the opposite direction, whether I could ease the risk of problems by a strategy such as taking it every other day, or whether I should quit and rely on something else, at least while I'm traveling. I'm willing to stick with it for a while longer, although I may skip tomorrow.


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## annie7 (Aug 16, 2002)

have you tried taking it at night on an empty stomach before you go to bed. some people say that helps cut down on the D and they have a normal BM the next morning.


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## Displaced (Feb 14, 2007)

I've never tried it at night. I'm planning to call the doctor's office and speak to her medical assistant with several questions, including how long to try Linzess before deciding whether the balance of efficacy and side effects is acceptable, whether it would be OK to skip a day occasionally if I've had a particularly strong reaction and feel like my body is cleared out and could use a rest from the stimulation of the drug, whether it's OK to take an anti-diarrhea product if I have a horrendous day, and, as you suggested, whether taking it at night might help. I wish this drug worked without the potential for such terrible diarrhea (at least for some people). I shudder to think what would have happened if my latest urgent incident had happened when I was away from home.


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## nsdnjbl (Dec 11, 2016)

Displaced said:


> I've never tried it at night. I'm planning to call the doctor's office and speak to her medical assistant with several questions, including how long to try Linzess before deciding whether the balance of efficacy and side effects is acceptable, whether it would be OK to skip a day occasionally if I've had a particularly strong reaction and feel like my body is cleared out and could use a rest from the stimulation of the drug, whether it's OK to take an anti-diarrhea product if I have a horrendous day, and, as you suggested, whether taking it at night might help. I wish this drug worked without the potential for such terrible diarrhea (at least for some people). I shudder to think what would have happened if my latest urgent incident had happened when I was away from home.


My GI suggested 10-12 weeks before giving up on it. I was also told to take it daily. I'm hoping to try the new lower dose soon.


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## Displaced (Feb 14, 2007)

I've been on the Linzess 72 mcg for about four months now and see absolutely no rhyme or reason to it; about half the mornings I have diarrhea after breakfast, whether I take the medicine 30 minutes before the meal or up to two hours before. Usually it's just once, sometimes twice, but generally once it's over I'm fine for the rest of the day. Then I had an unpleasant experience recently while out running errands; I thought I was going to pass gas but instead passed a small amount of brownish liquid. Fortunately I was in the lobby of an office building and quickly got to a restroom, then went home, but it shook me up that I had so little control.

Sometimes I have bowel movements multiple times during the day, although not necessarily loose and watery. On these days, I also often feel very lightheaded, somewhat dizzy, queasy, etc., and will be forced to cancel any plans for going outside the house, especially to an event like a concert or play when I would have to deal with the travel and the chance that a bad situation would arise during the middle of a performance, forcing me to make a hasty exit from a seat that would, of course, be in the middle of the row! Then I can go nearly a week without anything at all happening, to a point that becomes uncomfortable, while sometimes, I have just a "normal" bowel movement once a day. It's frustratingly unpredictable. Just when I think I'm doing OK, I have a bad series of days and want to quit, then it will get better again and I refill the prescription. I'm sure that the unpredictability adds to my stress, which probably then aggravates the crazy pattern of ups and downs. But it's hard NOT to be stressed when you never know what your GI system will do, or when and where you'll have issues.

Just recently I had a colonoscopy and have had more diarrhea than usual in the following few days. It's possible that the Linzess is partly to blame, and I'm considering taking a short break from it to give my system a bit more time to recover from the massive dose of laxatives used in the colonoscopy prep. I've called the doctor's office about this but haven't heard from them, so I'll probably have to decide for myself since it's a Friday and I might not get a reply for several days. In years of struggling with IBS, I just haven't found anything that consistently helps me. I did learn something new from the colonoscopy: I have a "redundant colon," which basically means it has extra loops, and that this most likely is a factor in my constipation (not that there's anything that can be done about it!). So onward I go, trying to muddle through and not get too depressed.


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## Guineagirl (Dec 1, 2016)

I've tried the 72 mcg dose, but I mostly stick with the 145. The 72 mcg, while making me "go" in the morning, nothing too dramatic, doesn't seem to help the early morning stomach rumblings? discomfort? that wake me up and keep me from going back to sleep.


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## jza (Oct 4, 2016)

I just started on the 72mcg dose last week, after taking Trulance for nearly a year (my insurance carrier stopped covering Trulance). It seems to be working without giving me the runaway diarrhea that Trulance gave me many days. The downside is because it doesn't appear to be as strong, some days I only have partial evacuation (whereas Trulance typically provided complete evacuation every day). I'm still taking samples so I'm going to give it a few more days before deciding if I should have my doctor put in a prescription for the higher dose.


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## annie7 (Aug 16, 2002)

thanks for the update. that's good that the 72 mcg isn't giving you as much D as trulance sometimes was..

yes, you could give the higher dose a try. or, like i mentioned earlier on this thread, linzess works on the same receptors that food does so you could try taking it closer to eating --maybe 20 minutes before breakfast instead of 30--and that might make it work better hopefully without giving you too much D. with linzess, it helps to play around with the timing of how soon you take it before eating.

good luck with everything.


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## jza (Oct 4, 2016)

annie7 said:


> thanks for the update. that's good that the 72 mcg isn't giving you as much D as trulance sometimes was..
> 
> yes, you could give the higher dose a try. or, like i mentioned earlier on this thread, linzess works on the same receptors that food does so you could *try taking it closer to eating --maybe 20 minutes before breakfast instead of 30--and that might make it work better* hopefully without giving you too much D. with linzess, it helps to play around with the timing of how soon you take it before eating.
> 
> good luck with everything.


That worked! I take it closer to eating now, and it works exactly how I'd like it to work. No need to increase the dose.


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## annie7 (Aug 16, 2002)

oh good! hooray!! so happy to hear that this worked for you!


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## dac122 (Feb 13, 2012)

Glad it is working!

One word of caution, many folks notice it becoming less effective after being on it for some time. If that happens, the higher dose might work, but also taking 72 two or three times daily. I take it three times daily. I get the same good effects as the higher dose with less D.

You may have to fight with insurance since all doses are once per day. But at least you it is a valid therapeutic option.


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## dac122 (Feb 13, 2012)

annie7 said:


> one thing about linzess--and i've mentioned this on the board before so maybe you've already read it but-----one of my gastro docs has done research and has run clinical trials on linzess. he told me that linzess works on the same receptors that food does. so generally, the closer you take it to eating a meal, the more diarrhea you get. and conversely, the more time that elapses between taking linzess and eating, the less D you get. it's all in experimenting and finding out what works best for you.
> 
> so if you're getting too much D try taking it an hour before breakfast instead of a half hour before as prescribed. you'll probably have less D that way. some people take at even two hours before eating or at night, on an empty stomach, before they go to bed.
> 
> good luck with everything. take care.


Very interesting.

Any idea why shorting (or lengthening) the interval before eating changes how much D you get? I don't quite understand why working on the same receptors makes any difference.


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## annie7 (Aug 16, 2002)

dac122 said:


> I don't quite understand why working on the same receptors makes any difference.


 i don't either but then, i don't know much about this sort of thing. that's just the way my gastro doc explained it to me. which kind of made sense to me, so i didn't ask him any more questions about it.

the full prescribing info on linzess mentions the "food effect" in section 12.2. section 12.1. explains the mechanism of action. not that i understand all that lol.

https://www.allergan.com/assets/pdf/linzess_pi

i just know from all my experimenting with linzess that this is definitely true. it really does make a difference how soon you take it before eating--at least, it sure did for me..


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## dac122 (Feb 13, 2012)

Since it seems increasing or decreasing the delay before you eat affects the amount of D, does anyone have a feel for Linzess efficacy when doing that? In other words does increasing the delay before eating from 30 minutes to 1 hour, or more, does it reduce efficacy, or improve?

Anyone have a feel for that?


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## annie7 (Aug 16, 2002)

for me, increasing the delay before eating reduced efficacy quite a bit. i longer i waited to eat after taking it, the less it worked--to the point where it didn't work at all.


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