Anyone used or using Linzess?: Linzess anyone... - IBS Network

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Anyone used or using Linzess?

30 Replies

Linzess anyone?.

Hello everyone, I'm new on here so first of all pleased to be in this network.

I have been suffering IBS C for a few years and sometimes IBS D. I have been prescribes Linzess but having issues with the effects, anyone any experience with this med?

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30 Replies
winfong profile image
winfong

There was a post about 2 months ago that seems to be getting lots of responses lately. Might want to start there.

in reply towinfong

Thank you!

mistyboo profile image
mistyboo

I was given linaclotide (linzess) 290 m by my gastro, not long ago. Was told it may give you the runs, if so take every other day. I took it before my evening meal, as i don't eat breakfast, It took 2hrs to work and certainly clears you out, however it lasted 4 hrs constant on the loo, which just isn't practical. Even the next morning seemed to clear things. Although I didn't get the pain I usually get after taking laxatives It made me feel out of sorts for a day. I did ask the doctor and chemist if there are lower doses say half or a quarter I could take but was told I would have to ask the gastro, to whom I'm not speaking to until August, and that the UK only do the 290 dose. So back to square 1!

diana1998 profile image
diana1998 in reply tomistyboo

There are 3 strengths 290 being the harshest.

in reply todiana1998

I'm on 290 too

mistyboo profile image
mistyboo in reply todiana1998

yes I know there re 3 strengths, but as I said I was told by chemist and GP lower doses are not available in the UK. I would like to try the lowest dose, to see if it worked.

diana1998 profile image
diana1998

Couldn't take that. Felt terrible on it. Too strong. Draws too much water into the bowel.

in reply todiana1998

That's the problem I am having too, it's just uncontrollable

diana1998 profile image
diana1998 in reply to

I'd change to something else. Felt ill for hours. Had to stop it.

Wonderwall3 profile image
Wonderwall3

Yes I trialled it for a couple of months but it did absolutely nothing for me. I still had pain and was still averaging 10-14 days between bowel movements so my Gastroenterologist told me to come off it and go back to my usual regime, Laxido and Dulcolax, which still does not work effectively for days. I too cannot speak to my Gastroenterologist until August so do not know what else they are going to try me on. I can't live with this chronic constipation any more, it is absolutely ruining my life.

in reply toWonderwall3

What dose did you have?

Wonderwall3 profile image
Wonderwall3 in reply to

290 mcg, which I understand is the max which is prescribed in the UK.

in reply toWonderwall3

How did you find the effects? I have no pains and it works amazing but it's just so desperate when it works its impossible to wait..

Wonderwall3 profile image
Wonderwall3 in reply to

It has absolutely no effect whatsoever. I think I was hoping against hope that it would regulate my bowels so reduce my pain, but it didn't. I have had such a slow gut transit and chronic constipation for so long that it may be that I needed to take it for longer but I decided against it because I didn't go to the loo for the same amount of time on it than off it and was taking so many other medications for Fibromyalgia nerve pain, that I just couldn't see the point.

in reply toWonderwall3

Have you tried magnesium citrate or magnesium hydroxide at a big enough dose with plenty water?

xjrs profile image
xjrs

Yes I have been taking it long term.

in reply toxjrs

What dose size?

xjrs profile image
xjrs in reply to

290 mcg

in reply toxjrs

Same, been on it 3 weeks but OMG its effects are brilliant but way too urgent! Eeek No holding on.

xjrs profile image
xjrs in reply to

It may still settle. In the end it didn't help me with the 'C' but helped with the pain so everyone is different. You could ask for a half dose, if it doesn't settle if you can get it. If in the UK I don't think the half dose is available here. I did ask about opening the capsule and putting half in with a bit of water and closing the capsule again with the remainder - I can't remember the answer, I'm not sure if the capsule is needed to deliver it to the right place, you'd need to ask your GP.

Starcatty profile image
Starcatty in reply toxjrs

My pharmacist says it's OK to open the capsule and sprinkle half on food.

Angelisse profile image
Angelisse

Hi Sally, I've been suffering from IBSC since last July. My main symptom in abdominal pain. I have been taking Linzess, 290mg for almost three weeks now. Still have pain .. might be getting a little better. Bloating going down slightly. My GI says we have to give it until end of June. I'm tolerating it fine. I did have no bad experience when I ate a big dinner and was not near a bathroom. But other than that it has been okay. Just wish it was making me feel better to a greater degree. Please keep me posted on your progress.

Hi Sally! I'm in the U.S. and I was started on 145mg. It helped with the pain, gas, and bloating but didn't little to nothing in terms of clearing anything out. So after a few months she bumped me up to 290mg. I'm still not having much more frequency in movements, but I take a lot of medications that have constipation as a side effect as well as having chronic IBS for many years, so I'm happy with the pain and bloating improvement and just supplement with some senna when I need it, for now at least. She did tell me when she put me on it that if I did have side effects (running to the bathroom!) that I could skip a day or two, but that never happened with me. I did read somewhere that sometimes you can have those side effects early on in starting on the drug and that it can get better over time. I hope you will get it settled down or get a routine where it works for you. Good luck!

Angelisse profile image
Angelisse in reply to

How long did it take for the Linzess to ease your abdominal pain? I've been on 290mg of Linzess for about five weeks and although I'm going regularly, I still have constant abdominal pain my lower right quadrant of my abdomen. So discouraged. My GI says I need to wait until the end of June but I am losing faith this is going to work.

in reply toAngelisse

Oh wow @Angelisse, you and I have had opposite experiences with this drug! It seemed to help with my bloating, gas, and pain right away, like within about a week! But with giving me more BM's? Not so much. I still struggle and after being on the drug a total of 3 months (2 months at 145, then a month at 290), I'm faring better than before the drug, but still have to add some laxatives sometimes. I'm frustrated that it's not doing enough to help me with that! lol I'm not sure what to tell you about the right side pain. A lot of people with IBS say they have a lot of left side pain, but you CAN have right side pain too so maybe that's just the way your system works? I hope by the end of June things will have improved for you, but if not, you may want to look into trying some collagen powder. I stumbled onto this as a tip from my physio who is working on my rotator cuff and also has IBS. Collagen can help a lot of issues, skin, hair, joint pain, etc., but apparently also GI issues. I didn't know that. So I started taking it 3 days ago and I've had a BM every single day since. And I'm someone who doesn't normally have any for a week or more at a time, often unless I use a laxative. I know you said you are fairly regular now, but perhaps they might help whatever inflammation or blockage or other issue is happening in the right side? I am NOT a doctor, can NOT give medical advice! Be sure to ask your Gastro. Maybe a colonoscopy is in order, if you haven't already had one? At any rate, I'm sorry you're going through this because I know the frustration you are having, and I hope things get better!

Angelisse profile image
Angelisse in reply to

Thanks for your reply! Very interesting that Linzess helped with pain. That gives me some hope. The collagen powder is very interesting. Let's stay in touch and see how we both fare.

in reply toAngelisse

Absolutely! Things are still going well over here ( ha, "going", see what I did there? ;) ) but I need to see if it continues. Still keeping my fingers crossed for you!!

Angelisse profile image
Angelisse in reply to

Thanks and you too!

Jojolaura profile image
Jojolaura

I have ibs _c don't go for days my gastroenterolist told me to take laxative every day which l did but stopped and tried flaxseed which has been a god send go to the toilet everyday now l recommend if u have ibs_c you give it a try l only need a teaspoon full on my bran flakes in the morning hope this helps

Pajarorose profile image
Pajarorose

Make sure you are not lactose or glutein/fructan intolerant. These things can constipate you. I take half cup canned, rinsed, beans (pinto or black) along with alpha galactosidase tablet daily and I have no C.

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