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 tried the linzess for a few days and gave up, does it take a few weeks to work? Miralax just makes me bloated, unless I take tons of it, like a colonoscopy prep. I need the push aspect, like duccolax. But if linzess provides that, I would try it again. Mom works for me, but gives me a horrible migraine, unfortunately.

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I just take the Linzess same dosage - no Mirilax - and I am able to leave the house after about 2-3 watery bowel movement. I work full time and have no problem at work.

The goal for the Linzess was also to help my nausea and motility problems - and I take Zofran as well. I have domperidone, but I am scared to take it becasue of all the side effects I've read about.

I don't feel that I need Miralax with Linzess. It does the job!

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Thank you so much, one more question. Do you take the jlinzess in morning with no food or liquid 30 minutes prior to eating or drinking ? The pharmacy told me that. I would prefer not having to wait 30 min to have my coffee!!!!!

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@Kavita - yes, I felt like it took several days to work for me.

@EFBS - glad to hear Linzess is working well for you. It doesn't seem to work as well for me if I don't take Miralax as well - but I am taking much less than I used to, and going more, so that's good. I take domperidone and I have NO side effects at all from it. Maybe worth a try! It has helped me quite a bit.

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Yes, I take it at least 30 minutes before food. Maybe coffee would be okay, I am not sure. I drink a lot of water with it, so I know water is okay. I usually take Linzess and Prilosec, wait about 10-15 minutes, take my domperidone, then wait 30 minutes before eating. It's kind of a pain and I have to schedule around it, but it works.

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Thank you for info, I might give it another try!!!!!!!!!

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I actually take the Linzess first thing in the morning and have my coffee within about 15 minutes. That has abosultely no impact on the effectiveness of the drug. It works just fine and I can't wait a full 30 minutes.

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kavita, I tried Linzess for a fews days also and gave up - it did nothing. I don't have a week of being 'blocked' waiting for it to work. Miralax did nothing for me.

asorge, did your GI guy advise you to take Miralax with the new miracle drug Linzess? If so, why? I was under the impression that Linzess was supposed to be the latest and greatest (for me it is not) and would work without the other stuff.

kavita, for now I too rely on Dulcolax every three days, the pain is 'delightful' (lemon juice and hot water helps), but it still works. When it doesn't, I'll be SOL.

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@blocked - when I first started taking it, my GI said I could try it without the Miralax. He was optimistic it might work on its own, but told me I might need to add Miralax back in. He said since it's a new drug, it's sort of unknown, a little. My GI gives me a little flexibility to adjust some of my doses (i.e., how much Miralax) as needed. Although I'm still taking Miralax, it is soooo much less than I used to have to take. I am slowly reducing my Miralax dose, as well - the last 2 days, I have taken about 3/4 of a dose instead of a whole dose. So for me, it has still helped me a lot.

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I took it with my coffee and without--no difference...I've also taken it with food. I took it for 5 weeks and stopped a month ago. Previous to linzess I took Miralax and high doses of it.. I never took it with the Linzess and I still had the diarrhea...glad there are some people posting their positive feedback!

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Blocked - Before I statrted the Linzess, I did a total clean out - like if your were having a colonoscopy. My doctor at Clevland Clinic said that this must been done in order for the Linzess to take action. I did the entire bottle of Miralax. Got everthng out then started the Linzess. I think that this played an important role is getting it started and working.

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I took my first dose of Linzess but also took my other meds, miralax and zelnorm. That was a totally mistake! I couldn't stop going to the bathroom and got so dizzy that I was on the floor about 10 times. I managed to claw to the cabinet where I had some tonic water and drank about half of it. It took about 2 hours of this before I could walk without passing out. I had a headache all day too.

The next day, I took only the Linzess and nothing has happened. I think I will continue to take some Miralax in the evening and then take the Linzess in the morning. It is hard to experiment with the dosing when you only have the 2 days off before I go back to work. Today is going to be a bad day without anything working. Hopefully, tomorrow with taking Miralax I will be able to go to work.

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@Nanname - I have a similar experience with the Linzess. Taking it alone doesn't seem to be super effective, unfortunately. I have added back in a little Miralax and it seems to do the trick. I still have some watery diarrhea most mornings, but generally that's better than not going at all. I did take the Linzess with my "normal" Miralax (way more than I take now), and I had many, many episodes of just water coming out (gross, sorry).

Right now I'm doing about 3/4 capful Miralax at night, and 290 mcg Linzess in the morning. I seem to alternate - every other day I will have a really productive "clean out" where I go probably 4-5x in the morning after I eat and drink. Usually only 1x of that is mostly water, and the rest is very loose. The alternating days I go just a little and have maybe 2-3x of mostly water. So, maybe it's not ideal, but it is so, so, so much better than not being able to go more than every 5-6 days (and having to take massive doses of Miralax to do so, and dealing with increased nausea, cramps, pain, etc). This isn't really ideal either, but it's an improvement.

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glad it is helping you. I tried it again, for me it is useless. I am going to try the solgar brand mag citrate tonight with sennacot and see how that does, who knows.

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have magnesium levels checked if doing mag citrate or any drug with it in it. Mine was too high to take it.
Clean out before starting linzess? good advise..my doc gave me a script and said it would help opiod constipation. not for that!...I read the insert! what is wrong with these docs? Wish I lived closer to cleveland. several docs here couldn't find my tumor and I KNEW something was wrong. What if we had universal health care...a panel of docs who say where and when you can go to a doctor? I would have died with my tumor as docs were too stupid to FIND IT on the xray!!!!!! Cleveland clinic found it. Dr. Bhatt. a student!!!!!!! God bless them!

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let me take back what I wrote a BIT.....as I cannot prove that the tumor was there. It was a second xray that showed it at cleveland clinic. I have no proof it was there when I was going from doc to doc with symptoms and no answers. Not fair to say they missed it or are stupid...lol so backtracking there a bit. :) I assumed......something gave me the symptoms though. mmmm

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My hi doc said today to try the 290 dose 2x per day. Also it is ok with morning coffee just no food also can be taken with stimulants

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I'm been taking the Linzess for 5 days now and I'm not so impressed with this new drug. I still have to take the Miralax at night so I still have the bloating and everything that goes with that. Also, take my dose of Amitiza at night. So now I have the same problems and have to go to work feeling miserable. This combination works very little. It takes up to 4 hours before anything happens.

I was taking zelnorm which is hard to find and very expensive. I believe I will go back to taking that.

Do you need to take Linzess for weeks before it works?

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"Do you need to take Linzess for weeks before it works?"

Hah, Nanname, that's the $64,000 question! From most accounts here, it seems the answer is yes. Some have had success in a week, me I didn't give it more than two days, since I want it to work out of the box, like Viagra for men.

As they say on the Internet, YMMV.

Maybe the next great pill................................................

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Isn't zelnorm off the market globally? Resolor works the most similar to zelnorm by the way. I have not tried it though. Some people have luck wih cytotec too. Cytotec can be used with stimulants. A lot of people take 200mcg 2Xday before meals. It is cheap too. Also Maybe if you ask your doctor if you can take 2 of the linzess and no more amitiza??? Always check with the doctor, and the pharmacists too!!!! Today I had luck with 1 linzess 290mcg and I take 4 sennacot tabs at night. My goal is to wean myself off the senna if I can or get down to 2 tabs would be good. I just started the linzess for the second time to give it another chance. Before I tried the drug by itself with no success. I personally hate miralax, it gives me bloating and gas, and does not help me expel stool. Of coure PEG which is the miralax in high doses cleans the bowel. But for me the daily doses just gives me gas and bloating and I am miserable, so maybe if you get off miralax and amitiza you will not have so much discomfort.?? Just a thought. We are all so different. I am going to give it 2 weeks to see, like you I want instant success too. I think when I try something new it is also a good idea to be pretty "clean" from the start, so I make sure I am not super constipated, so I can really get relief, and be able to judge the side effects from the drug versus all the gas from bad constipation, and IBS-C symptoms. That is me. Good luck, hope you figure out a regime, I know the frustration.

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