# Linzess



## SDLori (Feb 28, 2014)

Hi all!

I have read through many of your posts and thought I would share my experience. I HATE IBS-C...for the past 21 years. I found it hard to run anymore and not comfortable with sex. I finally found a new gastro doc and have found some relief! I had been taking Miralax, but he switched me to Citracel due to bloating. It really helped, though I was still constipated. It got to the point of taking an enema every day due to pain. He started me on Linzess as well. After reading the posts, I was scared and took it at night. I had the worst pains, almost to the hospital pains! Luckily I had Vicodin and that got me through the night. So I followed my dr orders and took it in the morning. I wake up an hour earlier, take the max dose with 16 ounces of water. I ride my spin bike and "the call" happens before I go to work. For about 10 days it was constipation- hard, round stools-sometimes with blood due to internal hemorrhoids. So I used an enema. Bur after about 14 days, I have normal painless stools, about 3-5 a day! It is not urgent or painful. I even drink coffee! But I have to stay away from dairy and fried food. I can do that- instant weight loss! I know it works for me, and I hope this helps somebody else. It is a frustrating personal hell to live with


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## GVPC (Feb 17, 2014)

Glad the Linzess has helped you. It makes me sick and I have nothing but serious runs with it. Gastro took me off of it yesterday. I'm sure its like any drug, works great for many, not so much for others.


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## bbrad_98 (Jan 26, 2014)

Glad the Linzess works for you! Hopefully that's the end of your problems.


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## Cherly_Q (Jan 21, 2006)

Hi! So glad it's working for you and you made it through the initial pain! I just started the max dose last night. 2 hours later I was in the bathroom and pretty much all night. Lasted till mid morning. I'm going to keep trying to take it hoping this will subside. Anyone else have this experience?


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## rdhckh (Feb 23, 2014)

I am going to give it up - first time I took it was wonderful and I thought there was hope this new drug was the answer. But every dose since then is either no response at all or diarrhea that is unexpected. You just don't know what is going to happen so you afraid to go anywhere just in case. Also terrible headaches. I have tried it for a month now - and just doesn't seem to be that beneficial.


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## bbrad_98 (Jan 26, 2014)

Cherly, The first time I took it, I had explosive diarrhea. I was taking it with supper because I didn't get the "take 30 minutes before your first meal of the day" message. Even taking it in the morning, it caused diarrhea for a while. This gradually subsided, but it also stopped working for me after 5 months. Just curious, why did they start you with the highest does. It seems like a smaller dose would be best at first.


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## Sandra Smith (Mar 18, 2014)

Though suffering for years with Constipation I've usually kept it straightened out with MOM, Dulcolax, Fiber supplements, and Miralax. Three years ago my GI put me on the miralax and fiber regimen. Everything was going pretty well (with the occasional flair up where I would have to use the dulcolax) until the past Thanksgiving when I experienced my first ever UTI, I went to the doct and was given "Cipro" antibiotic and OH BOY OH BOY I dont remember going to the bathroom and being so normal while i was on it for the 7 days but after that, all went to hell so to speak. I was miserable, constipated, bloated, pain..........etc. I tried to straighten it out for over 6 months on my own but no luck. Back to another GI who did a colonoscopy which only showed diverticulosis and he said I had a slow colon. He prescribed Linzess and a high fiber diet and said the pain in the lower left abdomen would ease up with the increase of fiber. It did not. I then read and heard that some people would have bad reactions to pysllium fiber. I have been eating and taking that supplement for over 3 years so that cant be it but it was. I've taken out the pysillium and the pain has eased up but that is about it. When I take the Linzess (lower dose) I am house bound all day going to the bathroom, to start with one normal stool then diarrhea the rest of the day. I've maintained the high fiber and have tried to get off the Linzess, that isn't working either  the longest I can go with out the Linzess is 3 days before complete misery of constipation, bloated, and this softball sized knot in my lower left side. So going back to fiber and miralax only works for about 3 days at most (2 really) The GI was not concerned with the pain nor did he think anything about how well I did on the CIPRO antibiotic (first time I had ever taken it) So it really has me wondering what is was about the Cipro that seems to have created such havoc in my system and if any one else has had any experience with it.


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## rnmom (Mar 23, 2014)

I've been using linzess 145 mostly once a week for about a year. I rarely have a bm on my own and rarely even have the urge to go. I have to mark  my calendar as a reminder when i went last so i dont go to long. When i use it i start with formed stool and end with watery d over the course of a few hours. I have found that a lot of water and something light to eat helps move it along. I personally dont mind how long and type of stools i have, as the alternative is nothing. Nothing else has worked for me ever this consistently. When i first took it my dr recommended daily but i had too many stools so he suggested once every 3-4 days. Depending on my schedule i plan around and use it mainly once a week in the late afternoon/evening. After reading some posts i may switch to before bed but i dont want any impact on my daytime life.


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## Saucy70 (Mar 31, 2014)

This is in reply to Sandra Smith. I have also had a problem with antibiotics, or at least I suspect that's what's going on right now. I had an ear infection this month that wasn't responding well to antibiotics, so I went through three of them and most of a steriod regimen, as well. It cured the ear infection, but later gave me a yeast infection (of course) and now I am having a one-week bout of constipation and horrid gut pain. I took my first-ever enema yesterday, and that didn't fully empty me. I don't know if the antibiotics are the cause, but I'm sure that my gut is upset from losing all of its beneficial flora, and I am working on rebuilding it with yogurt and probiotics. I'm just hopeful that this never happens again. I was not on Cipro, but was on levofloxacin, cephalexin, and cefdinir. I suspect any antibiotic will mess with your gut.


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## rayvinblack (Apr 9, 2014)

I just had my first dose of Linzess 145 mg last night. After reading some posts I took it at night so I didn't totally interrupt my day. I took it at 9pm and by 10:30 I was going urgently but formed, then about every couple hours after that I would be awakened to go very urgently and it was mostly runny after that. Didn't really have any cramping or pain and after the way I have been feeling a good cleaning out was very welcome. I am tired today and a little dizzy, but I'm thinking between lack of sleep and loss of water I may be dehydrated. Loading up on Water and Coconut water for hydration. I'm thinking I will try it earlier in the evening so I'm not up all night and then maybe cut it to a couple times a week. My stomach is finally flat again. I'm also using probiotics, flax and metagenics GI Sustain powder which is for Leaky Gut & IBS. I really like the Metagenics products. I used them for a few years after my surgery for Diverticulitis (had my sigmoid colon removed cause the diverticulitis was so bad) it definitely calmed my stomach. I haven't used it faithfully for a while, moved twice across country in the past 6 months, husbands work transfers, so I am a little stressed and I think that a big reason my stomach has been a mess lately. Going to see a new Gastro next month, soonest I can get in, and see what they say. Very frustrating not knowing what will set it off and still trying to have a life and go out to eat and enjoy things. Good luck to all. I will keep posting my Linzess stories in case it helps.


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## ABNormal (May 24, 2006)

Hi! Had to laugh--" I HATE IBS-C." Don't we all??? Does anyone love it?

I have written several posts about my experiences with Linzess. I would say I've had mixed results. I started using it at night and really nothing happened. I switched to mornings and had more success, but good old IBS-C still has its way sometimes. I end up using herbs and enemas. I have not had the diarrheal episodes that others have mentioned. All in all, I will stay with it because it does work most of the time, but I'm always fearful that it will wear off as most other prescriptions/herbal remedies have in the past.

BTW, I've had IBS-C for 41 years. (of course it wasn't called IBS-C then)


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## side effects (Apr 12, 2014)

I have been on linzess 10 months. In the beginning on 145 mg and at night I was feeling like I had restless leg syndrome and never associated it with the meds. Then March 5 my doctor put me on amlodipine and increased my linzess to 290 at my request. I know everyone has different side effects but I had such bad muscle pain and aches I could hardly walk. My job is sitting at a desk. From using the mouse I had excruciating pain in my right arm so I stopped taking the blood pressure medicine that I was in for 6 days. Well the pain and muscle aches did not stop. I couldn't even pull the soap dispenser in the ladies room so I've come to realize it is the linzess making me ache. I've been off of the. Linzess for 12 days and still can't stand the pain unless I take Tylenol or a pain pill. I went for a walk today for 20 minutes and every muscle in my body hurts. I hope this goes away soon and I will never take linzess again. I never did give me diarrhea although I would welcome that but not with the pain. I wanted to share this bc someone asked. If anyone has been on this longer than a couple months. Thanks for listening


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## Nojokeibs (Apr 14, 2014)

SDLori said:


> Hi all!
> 
> I have read through many of your posts and thought I would share my experience. I HATE IBS-C...for the past 21 years. I found it hard to run anymore and not comfortable with sex. I finally found a new gastro doc and have found some relief! I had been taking Miralax, but he switched me to Citracel due to bloating. It really helped, though I was still constipated. It got to the point of taking an enema every day due to pain. He started me on Linzess as well. After reading the posts, I was scared and took it at night. I had the worst pains, almost to the hospital pains! Luckily I had Vicodin and that got me through the night. So I followed my dr orders and took it in the morning. I wake up an hour earlier, take the max dose with 16 ounces of water. I ride my spin bike and "the call" happens before I go to work. For about 10 days it was constipation- hard, round stools-sometimes with blood due to internal hemorrhoids. So I used an enema. Bur after about 14 days, I have normal painless stools, about 3-5 a day! It is not urgent or painful. I even drink coffee! But I have to stay away from dairy and fried food. I can do that- instant weight loss! I know it works for me, and I hope this helps somebody else. It is a frustrating personal hell to live with


Thanks, it's great to see it actually work for someone.  For me, it worked like a charm for about a week, then... deafening silence... So I went off of it and went back on a few weeks later... same effect... works for about a week, then, nothing.... weird.


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## Veggiegirl02 (Mar 19, 2014)

I would like to give this a try since I have heard some good things about it and even suggested it to my doctor but he refused....... He mumbled something and then walked away and then the nurse came in saying oh the doctor wants to schedule some more blood tests and a a Xray. I guess being poked and X-rays will be help and me being in pain is okay.......... Hmm I sometimes wonder if I should get a second opinion.


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