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Linzess Review


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#21 CRINK

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Posted 05 February 2013 - 12:00 PM

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Hi everyone,  my doc started me on linzess 290 about 3 weeks ago.  I took it for 6 days (only able to because I'm not working right now). Within 10 minutes of taking it I felt extremely full and bloated, and my belly sounds like high tide.  Within a half hour to an hour I began my run to the bathroom every 2- 15 minutes for about 5 hours.  Sometimes I would just get my hands washed and have to sit back down.  However, when the 5 hours was up I felt great, empty with a flat tummy.  On day 7 I switched to 145 which produced the same bloat, fullness and belly sounds within 10 minutes( a little less extreme but not much).  For the first 5 days, within an hour I would start running but only 3 or 4 times for about 2 and a half to 3 hours.  The next 5 days side effects lessened but so didn't the amount being released, I no longer was emptying, just little bits of liquid 3 or 4 times for a few hours.  The last 5 days with 145 I'm getting the bloating, fullness, with less sounds but still very uncomfortable.  I have only went a teeny amount each day, but continue to feel unsafe to leave the house.  So 290 worked great if you have 5 or 6 hours to be tied to the toilet everyday.  The 145 not so great with the same need to stay home because you just don't know.  I know once I get a job there is no way I can take it any longer.  I return to my doc in 2 weeks.  I am going to try to stick it out until then.  Doing 145 during week and 290 on weekend.




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#22 RailFan

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Posted 06 February 2013 - 04:01 PM

FWIW, my doctor has told me to stop taking this medicine.  I gave him a run-down of what happened to me the day I took it, and he indicated I'd had too many adverse effects from it.  I wasn't too surprised.  My immune response is completely screwed up, account extreme, chronic stress, and I'm in a state where my body reacts to just about everything.



#23 Rose

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Posted 07 February 2013 - 05:01 PM

Hi All.  I took the Linzess for the first time last week.   I took the lower dose first thing in the morning when I woke up. I get up very early, so I was hoping it would work before I had to leave for work.  Within an hour and half, it did start working.  I went in and out of the bathroom a few times. It was "loose", but not Diarrhea.   Then it stopped, so I got ready and went to work.  I felt pretty good all day.  I had some gas, but I always have gas. It was not painful and I was pretty happy with the way I felt.  I had no side effects from the Linzess.  So I did the same the next morning.  Again it started to work within an hour and half.  It was loose again, but I noticed it didn't seem to work as well as the first day, but I could live with it.  I went to work and had more gas. This time it was somewhat painful gas, not debilitating but enough to be annoying and I did not feel as good as I did the first day.  So the third moring I did the same thing and took it as soon as I got up.  This time it started working within the hour and half, but no where near as well as it had worked the 1st day I took it.  I was already feeling gas pains, but I got ready and went to work.  After being at work for about two hours, the gas pain was so bad, I could barely stand up, so I left work and went home.  I have not taken the Linzess since and I don't know if I dare try it again.  If I do, I will take two pills for the full dose and see what happens, but if I get those horrendous gas pains again, I will not take it again.  I'll let you know what happens. To be honest, so far I haven't read anything from anybody about them being thrilled with the Linzess.  I had such high hopes for this drug.  I feel totally let down.

 

Rose


"Remember To Stop and Smell the Roses"
Rose (C-type)

#24 annie7

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Posted 07 February 2013 - 05:14 PM

Hi Rose--yes it is disappointing, isn't it. pretty much the same thing happened to me with it. for me the the 145 mcg didn't do anything so i took the 290 mcg and the first day was good but each day after that the "results" went down and the gas pain and the bloating went up and every day i felt like i was filling up with fluid-- primarily in my transverse colon--which i just couldn't get rid of.  very painful.

 

good luck to you with the two pills--hopefully they'll help...


these are just my own thoughts. for expert medical advice please contact a health care professional.


#25 razzle5150

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Posted 09 February 2013 - 07:30 PM

well my update , didn't work , I will try again later , I had to edit this post . I was confused about another med


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#26 allura24

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Posted 09 February 2013 - 09:27 PM

Razzle, I'm so sorry it didn't work out for you and I hope you have a quick recovery. I am so appreciative that you and others on this board shared your experience honestly. These reviews have helped me decide that this drug is not for me so I'll stick with my Phillips Colon Health and herbs while I wait for a better solution.

#27 RailFan

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Posted 11 February 2013 - 10:40 AM

Another follow-up.  I took my one-and-only dose of this medicine Thursday, January 31st.  By the following Monday (February 4th), I found myself dealing with stabbing gut pain.  As the week progressed, the pain moved... slowly... from top-center abdomen (around the stomach area) over to the right (my right), and then to its current location, which is right around the belt buckle area.  Last Thursday (Feb. 7th), the pain was so gripping and so bad that I could barely walk.  Every step I took caused a huge, gripping pain, like a muscle spasm.

 

Today marks one full week of pain.  The pain is less intense now, but it's still there.  My constipation is still very real, too.  I'll be reporting this to my doctor later today.  I'm headed over to see my therapist in a few minutes, and I'll be letting him know, as well.  I've had constipation be so bad that it's caused pain before, but never THIS much pain. 

 

Stomach pain is a noted side effect of this medicine, but I'm not sure what they really mean when they say "stomach".  Stomach, as in the actual stomach, or stomach, as in the general abdominal area?

 

What a mess.



#28 Bonzaii

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Posted 13 February 2013 - 07:23 AM

Hi everyone. Thank you for your post on your experience with Linzess. Thank you for posting about taking it at night, that made the diarrhea a little easier to deal with at first, but then it started to wake me up at night. Does anyone know i they are ever planning on making an even smaller dosage? I am 5'2" and 105lbs and I feel like even the smaller dosage is too much for me. I have been taking it for about 2 weeks up until yesterday. I needed a day off from the diarrhea. I can't take it. Plus, my doc gave me a 30 day trial bottle and after that, I won't be taking it unless he plans to supply me with samples because my insurance doesn't cover it anyway. And it doesn't bring me enough relief to want to fight the insurance company for it.

 

I have found that whether I take it in the am like I am supposed to or at night before bed, my IBS C symptoms still come back by early evening. (Gas, bloating, pain.)



#29 hotrod1821

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Posted 15 February 2013 - 10:45 PM

My doctor gave me a sample of Linzess (290mcg) about 3 weeks ago.  The first few days, I didn't notice a difference as I was still having severe stomach pain and bloating.  By the third day, it felt like it was finally working and was able to go to the bathroom even though it was mostly diarrhea.  Since then, I've had the diarrhea off & on, every couple days or so.  I have noticed that anything caffeinated will trigger diarrhea after I've taken my pill in the mornings.  And unfortunately, this usually lasts throughout the day.  Other than that, I have had great results with Linzess and I'm sad that it's such an expensive drug (which insurance doesn't cover sad.png ).

 

Hopefully you can get your situation straightened out.  It may just take awhile for your body to get used it. 



#30 Rue

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Posted 13 March 2013 - 10:24 AM

On the 145 dose and taking in the morning half an hour before breakfast. Today is day 9. I have had pain and bloating and pretty much just water coming out every 2-3 days. It will be a sudden urge and then not a lot comes out. Still feel like I need to go. Completely bloated and backed up. dry.png

 

Edit... Just talked to my GI specialist and she doesn't want me to give up on it just yet. So I am to take the higher dose starting tomorrow.

 

Edit... First day upped to 290 and this bloating and heaviness is pretty miserable (I'm a thin person and I look like I'm pregnant today). Took it six hours ago and all that came out just a few minutes ago was water, nothing even a little bit solid. I wouldn't even care if it was diarrhea as long as something was coming out and the pain was gone.


Edited by Rue, 14 March 2013 - 12:04 PM.


#31 stressedmess

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Posted 15 March 2013 - 12:53 AM

Rue, I had the same problem as you when i first started with linzess. I had that pain and bloating. My suggestion to you is to try to take it about an hour before you fall asleep and see if it works first thing in the morning. That way you can sleep through all the bloating and pain. That's what i do and it works well. I can't say it makes my BM any less watery but like you said...i dont care if it's diarrhea as long as i go. 



#32 Cappy

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Posted 17 March 2013 - 08:31 PM

I have been on Linzess for just a day less than 1 month. It had been working great. But two days ago the cramping returned unexpectedly. The only thing I can think of as a reason for this is my anxiety about a surgery I am scheduled for in a few days. Otherwise I am doing nothing different. The surgery makes me anxious because the antibiotics and pain meds I get when I have this procedure always causes the ibs to flare terribly.
I hope that is the reason for the Linzess sudden ineffectiveness. It has done such a great job up until now. Has anyone had Linzess stop working suddenly like it has for me?

Steve

#33 ebolus101

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Posted 18 March 2013 - 06:28 PM

Hey everyone I was perscribed Linzess 290 at first, but after a couple of days of just constant D and watery bowel movements I was lowered down to 145. The lower dose worked amazingly but today about 7 days after starting this dose it has lost it's "umph" and I had to really force liquid/semi solid stuff out. Is this just my body getting used to the linzess? Also does anyone know if linzess speeds gastric emptying?



#34 amynh88

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Posted 19 March 2013 - 02:52 PM

I have gastroparesis and chronic constipation. My doctor put me on Linzess last week and I took a look at these reviews to get an idea about what other people experienced. I had a lot of similar side effects.

 

The first day I started it I took it at 12:30pm. 30 minutes later I had the chills and couldn't seem to get warm. An hour and a half later I still didn't have a bm and felt very light headed and sleepy. 30 minutes late I had my first bm and it was normal in the sense it was difficult to pass then 10 minutes later I have very watery diarrhea. I was stuck in the bathroom for 10 whole minutes during this episode. 20 minutes later it happened again, stuck in bathroom 10 minutes straight. I ended up making a visit every 20 minutes after that. Around 5pm I had stomach pain, was very tired and had a bad headache. I tried to keep drinking water but was nauseous. I think it made me dehydrated. I also had very loud gurgling gas pains.

 

I called my doctor and they said this can happen when you first start it and are really backed up. So I tried it again 2 days later, I had to wait because I work and where I sit at work isn't anywhere remotely close to the bathroom. This time I tried it before bed. I saw that others suggested doing that. I went to bed at 11ish and woke up at 1 and it all played out the same way as before. It kept me up almost all night and I feel tired, achey, headache, just awful.

 

I think there are too many unpleasant side effects to take this on a regular basis. I wish they had a smaller dose, I took the 145mcg.

 

I think this is a great way to cleanse completely but it can make you dehydrated and keep you in the bathroom for hours. Not ideal.



#35 kigo

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Posted 11 April 2013 - 12:34 PM

Good to see feedback on this medication. It helps me to know what others are experiencing. Been on it for month now. I had six pound weight gain in first week. Was hoping it was fluid and mostly it was. I always read PI on any Med and was a bit concerned that I was alone in the bloating and weight gain. I even stopped taking it for a few days and stomach was flat again. Pretty much in observation mode now. Will update Dr in next week or so. Since this is one, if not the, last resort Med for me, not sure what will come next.

This Med is only one that has relieved C. It works some days and not others. When does work, it's with six or so trips to bathroom over course of half to one hour and starting within few hours of taking in morning. Dr and PI say take 30 minutes before breakfast on empty stomach. For me, doesn't matter if I take with or without food since get same effect either way. After that bathroom time, little problem for me later in day. Between jobs now, so not sure I can chance taking this if working since when it hits its urgent and time consuming. I may use it intermittently ... like on weekends or when C is most severe. Just would have to decide if the bloating and water retention (even with taking 90 + ounces of water daily) is tolerable. Jury is still out but less than optimistic.

History
-Chronic severe C. 2 colon surgeries in last five yrs.
-Sigmoid and another piece of colon removed and rectopexy to remedy rectal prolapses.
-No obstructions or diverticulitis, but have small rectocele per recent dynamic MRI and ultrasound. No surgery needed.
-No gluten or lactose allergies. Tested negative on both.
-Have had both biofeedback and physical therapy (including internal and external rectal work) which helped some... more than most things.
-Have had SIBO test which was positive and treated with antibiotics. This definitely helped with bloating. Followed this up with prescribed probiotic VSL (heavy duty and expensive, but OTC through pharmacist ) to replenish good bacteria after antibiotics. Long term VSL not continued because no effect on C for me.
-Have taken meds and other things with little or no effect: zelnorn, amitiza, different probiotics specifically for C, stool softeners, Magnesium, FODMAP diet which helps a little with pain, various fiber supps Miralax, benefiber, metamucil, acacia senegal etc including various combos of them, enemas and suppositories which sometimes help a little, but mostly enemas don't even come out.
-Next steps per my diligent Dr. are allergy testing although allergies unlikely since so hives or breathing issues with food. Tests for intolerances not clinically validated yet according Allergy based medical societies (different results from different labs using same samples and false positives resulting in unnecessary food restriction which could impact nutrition - labs tested include those used by alternative docs and pharmacists.) Still may do blood and stool intolerance testing on my own, not as diagnostic, but as starting point for trying elimination diet (again).
-Last resorts per Dr are interstim implant then more surgery if interstim not successful. Doing nothing is not option because of incontinence related to severe C.

#36 rogerlig

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Posted 16 April 2013 - 02:19 PM

Linzess worked better than I expected.  "Relief' within two hours on the first day (higher dose).  Been over a month now, and still working very, very well.  I'm actually quite impressed.  It's worth the $85 per month (and that's with Medicare).  I can't imagine how expensive this would be, uninsured.



#37 mmchawley

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Posted 02 May 2013 - 12:04 AM

I started Lizness back in the early part of April (the lower of the two doses) and had to stop after a few days. I have IBS-C but the drug gave me such horrible diarrhea and cramping, and I was in the bathroom multiple times a day. I went off the drug and tried to start it back up again, with the same results. It is frustrating for me, because I thought it would really help with my symptoms, but it took them to the complete opposite end of the spectrum and that doesn't work for me either. 



#38 Hazel Jane

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Posted 17 May 2013 - 12:54 PM

My doctor gave me the 290 mcg dose to try, and I just discovered that this dosage is not approved by the FDA---only the 145 mcg dosage is approved. So, I'm wondering why many of us have been given the un-approved dosage. It seems like a lot of people have had unpleasant side effects. I just tried my first 290 mcg pill this morning, before realizing it was not approved by the FDA, and am already experiencing pure diarrhea. Why has Linzess sent the unapproved dosage out to so many doctors? I read that it wasn't approved because it didn't seem to be more effective, but it could also be more dangerous--obviously. I hope that other people will ask their doctors about this because it's quite troubling to receive something not approved by the FDA.



#39 DrMom4two

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Posted 11 June 2013 - 03:55 PM

I have started on Linzess as well. I was first given it about a month ago when my IBS-C started to act up. I have had IBS-C over 25 years. I can distinctly remember because I was planning my wedding when it started. Winter of 1984. When I was on Fluoxetine for my PMDD symptoms the IBS-C didn't seem too bad. I had a few bad episodes but nothing I couldn't handle. I had to go off Fluoxetine because of long term side effects. It was causing frequent migraines and restless leg syndrome. Now my IBS-C is back with a vengeance. Last month the doctor started me on Linzess 145mg and nothing happened just increased the stomach pain with the bloating and gas. He took me off it and scheduled a colonoscopy which I went for.They found a polyp, erythema {inflamed patches) & friability (easily bleeds) in the cecum. My intestines are also twisted which is why I get so constipated. He had me take a laxative and high fiber diet every day. Well it didn't work again only went very little. SOOOOO he put me back on the Linzess but double the dosage. I take them in the morning since it has to be on an empty stomach. The cramps starts along with the bloating and gas. I got diarrhea from it but didn't empty out. I know I have to give it awhile so I am trying to be patient. However I am going on a cruise soon and I don't want to have an accident. I only wish I could just relax and not worry so much. I know this is half the problem.



#40 riisey007

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Posted 14 June 2013 - 12:44 PM

My doctor gave me samples of both dosages over a month ago. I am very pleased with Linzess. I suffer from calcium issues due to over usage of enemas so I was glad to see this product. I was skeptical at first but decided to take anyway. I have tweeked it some due to the effects seeming to wear off. Instead of taking it on an empty stomach 30 minutes prior to eating. I take it around lunch time and after I have eaten some portions of my food. Within an hour it sends me to the bathroom. Yes!! It usually sends me at least 3 times but that is ok with me, I was severely constipated before Linzess and it feels good to go to the bathroom. The Linzess gives you time to get to the bathroom because your stomach starts growling and you know you have around 5-10 minutes to find a restroom. I am appreciative of the medicine. If it is not working for you or if its working a little to well then just tweek it, it is your body. Don't give up!! I must add I started with the low dose and made my way up to the high dose.







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