Has anyone used Linaclotide (Constella) a new ... - IBS Network

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Has anyone used Linaclotide (Constella) a new drug for IBS constipation.

34 Replies

I have had IBS for several years and my most recent problem with it is constipation. I have been taking two sachets of Fybogel with Mebeverine a day plus four Sennokot but they are not really doing the trick. I have read about Linaclotide but don't think it is Nice approved. Here is the link to the information I found. ukmi.nhs.uk/applications/nd... Does anyone know if it is available in the UK

34 Replies
Raas21 profile image
Raas21

I've tried various laxatives but the only thing that helps is diet

Thank you Raas and Kerry. I am in my 70s and I think that insides sometimes don't work so well in older age! I do have a fair knowledge of nutrition and we eat a sensible diet including high fibre, I drink a lot of water and swim nearly every day so am doing most of the right things. The IBS started after a bad bout of food poisoning and until now I have been able to control it pretty well - I find Questran very good. The constipation causes acid reflux which can be quite unpleasant.

Floanne profile image
Floanne

I am 65 and have suffered for many years with bad constipation. I am on a drug for acid reflux. last week I began having terrible pain under my breast bone which radiated up to my throat and numbness in both arms from the elbows down. It was so bad I thought I was having heart attack. I got an over the counter 150mg of Ranitidine which has helped somewhat, and I am also on Lansoprazole. I am wondering if this could be caused by the constipation?

poing profile image
poing in reply to Floanne

Although that pain is probably just be acid reflux, which I gather can be quite painful, you should probably get youself checked out by a doctor to be on the safe side.

Yes I think it could. My doctor told me that constipation is a direct cause of acid reflux. I take Omeprazole and Gaviscon for that but it is does not always work. That is why I was interested in this new drug and I now find there is a very good article about it in the September Gut Reaction - it is being trialed in Doncaster and the results sound promising.

poing profile image
poing

I think the lansoprazole could make constipation worse, which will in turn make the acid reflux worse. The cause and effect are the other way around... constipation is caused by slow digestion, which is often caused by low stomach acid. The omeprazole will get rid of the acid reflux symptoms, but will also lower stomach acid further, and I think it could possibly make a person more constipated.

I think I've read everything there is to read about constipation and how to deal with it, and if you're doing all the sensible stuff - staying hydrated, keeping moving, eating real food and taking appropriate supplements where necessary - then food intolerance and low grade chronic gut infections like H Pylori are some possible causes.

Certain foods seem to be more slowly digested than others, especially if a food intolerance develops, so you might notice that some foods are fine and others less so. Wheat is not my friend, it blocks me up completely every time.

This comes full circle back to low stomach acid... you need good levels of stomach acid to kill germs, so low grade chronic gut infections can be the result of low stomach acid.

The new drug sounds interesting though.

Thank you Poing - that is interesting about Omeprazole and could well be part of the problem. I will experiment.

bubbles75 profile image
bubbles75

HI, I have just been prescribed this medicine so once it has been ordered I will start taking it.

Have you, or anyone else, tried this now? How did you get on?

in reply to bubbles75

I have not tried it so far. After I wrote that I went to a different consultant - I asked him about it and he said he was not prescribing it yet. He is still assessing how best to help me and I trust his judgment so am not pressing it. I would be interested to know how you get on. Good luck.

Ffion321 profile image
Ffion321

Yes, I was prescribed it a month ago by my surgeon and have to say so far so good. My main problems were servers abdominal distension and pain not linked to anything I ate or to constipation. I have not had these symptoms sinse starting on it and am very pleased in fact life changing. There is some loose stools initially so be warned!! I have not taken it for the last two days as I forgot to pick up my prescription and can feel the symptoms coming back already.

Kimbo58 profile image
Kimbo58 in reply to Ffion321

Hi I've just been prescribed this have taken 3 days worth and so far nothing how long does it take to work as i feel I'm blowing up even more 😓

Di-Mc profile image
Di-Mc in reply to Kimbo58

Hi Kimbo58

It didn't work well for me, like you I was taking it and nothing happened until I was too uncomfortable to continue :/ How did you get on in the end with it ?

I'm afraid I gave up.

Mizzy61 profile image
Mizzy61 in reply to Kimbo58

My consultant prescribed me constella for server constipation. Some times I don't go for a week and feel so blotted and uncomfortable.

I have to take 1 a day 290g

.2 days in and still not gone.

Stella58 profile image
Stella58 in reply to Ffion321

Can you take a night 

Kerryjess profile image
Kerryjess

Hi Brandywell. I have IBS C and the consultant who diagnosed it put me on to Constella a few months ago. I had tried Movicol, senna, etc etc and was still constipated. The Constella works, but it is drastic, at least for me! By that, I mean, i take it at least half an hour before my evening meal, as it must be taken on an empty stomach. Within 2hours, my stomach will be gurgling constantly and the only way to describe the loo experience is an explosion! I will be on the loo several times during the evening. Now I take it every other day with my GP's approval as I found it too much to have that every night. It works by making everything pass through the gut more efficiently. It is definitely not something you want to take if you are going out somewhere or having friends in!

I eat a lot of fibre and drink a lot as well but this is the first thing which has really worked to clear the constipation. I think it's a case of try it and see how it affects you.

Di-Mc profile image
Di-Mc in reply to Kerryjess

I have just started on this and am curious if you are still taking it and whether you still find it very beneficial ?

Stella58 profile image
Stella58 in reply to Kerryjess

Are you still happy with results 

polly2000 profile image
polly2000

Linaclotilde is available - it didn't help me though -first day it was vicious - then didn't work at all but gave me terrible cramps. watch out for the sennokot - long term use damages your bowel and makes things much worse. I take Prucalopride (Resolor) on prescription an and take Oxypowder at night, also have regular colonics and take probiotics - not perfect but better than a colostomy, I also try to follow Jensen's Guide to better bowel health - this is a detox programme plus on going programme

icecubejenny profile image
icecubejenny

Yes. I have recently been prescribed Linaclotide 290mg before breakfast. I had IBS-C probably caused by a virus or food poisoning. My bowels were not moving no matter what I did. I am 57, healthy, on no medications other then above. I was not able to have a bowel movement without taking the preparations that prepare for colonoscopy (high doses of mag citrate and Vit C) I was pretty miserable actually. I had to travel to a different city to go to a GI. After making sure I had no bowel blockage he prescribed and I am finally having bowel movements. I am eating lots of stewed plums, steamed zucchini, lentils etc. I consider Constella a miracle drug. I do not care about the cost. It is such a relief to at least have my bowels moving again.

icecubejenny profile image
icecubejenny

Yes. I have recently been prescribed Linaclotide 290mg before breakfast. I had IBS-C probably caused by a virus or food poisoning. My bowels were not moving no matter what I did. I am 57, healthy, on no medications other then above. I was not able to have a bowel movement without taking the preparations that prepare for colonoscopy (high doses of mag citrate and Vit C) I was pretty miserable actually. I had to travel to a different city to go to a GI. After making sure I had no bowel blockage he prescribed and I am finally having bowel movements. I am eating lots of stewed plums, steamed zucchini, lentils etc. I consider Constella a miracle drug. I do not care about the cost. It is such a relief to at least have my bowels moving again.

JackoI profile image
JackoI

Having just come back from America, I can say our health service is so much different.

Due to the way it works over there, so many medicines that you need a prescription for ere are available in any supermarket over there.

One case is I found a medicine claiming to cure and relieve symptoms of IBS. But, it wasn't Aloe Vera or any product like that (which many think is a good treatment).

When you read the safety leaflet, you read things like 10% of people will have worsening of symptoms, and such like it isn't worth the risk. Sadly, can't remember what, if any, active ingredients it has.

Diet is the best, as it's natural and your body deals with itself without unnatural medication.

Bill_Gunn profile image
Bill_Gunn

Yes! I have just taken the first dose this afternoon.

It has been a bit of a journey actually getting hold of the tablets though.

My Consultant Gastroenterologist tried to prescribe Constella via the hospital pharmacy. The hospital didn't have any. The consultant then had to write to my GP and in turn my GP had to ask the CCG (Clinical Commissioning Group).

In all it has taken eight months from the original consultants prescription to getting a bottle of 28 capsules this afternoon.

Although it took so long to get hold of, my GP said it was still in "Commissioning" stages and it is very expensive too apparently.

It is still in the early stages I think as the Patient Information Leaflet asks you to report side effects through the Yellow Card or flag scheme I think it is called?

How it will work I don't know, took first dose at 5pm tonight and although I can feel more gurgling than usual in and about the old bowels it doesn't feel explosive. But I'm expecting a bit of the runs a bit later. I'll come back tomorrow and let you know how it goes.

Stella58 profile image
Stella58 in reply to Bill_Gunn

Are you still using. 

Bill_Gunn profile image
Bill_Gunn

I hope my first reply appeared on Constella?? As a follow up, I took first 290 micrograms at 5pm at 8pm had a very successful visit to the loo.

Admittedly I felt it about 20 mins before "impact" so to speak, then a bit of a strong wave of Stomach cramps (though nothing on usual magnitude scale) was over in 5 mins. Bloated feeling past now too.

If Constella works like this each time then it seems to be a great medication. I hope that it doesn't accumulate each day though! After reading the patient leaflet though, it says that the medication binds to the Gut wall and not absorbed into the body. So hopefully it will work on one visit a day....

in reply to Bill_Gunn

Thank you for updating me on your experience. In the event I found that other remedies for constipation worked for me and I no longer had a problem so I did not pursue the Constella option. I hope it continues to help you.

Di-Mc profile image
Di-Mc in reply to

I couldn't cope with the Constella and came off it. x

ggerry profile image
ggerry in reply to

Is what you found something you like to share with us maybe help us thank you

Di-Mc profile image
Di-Mc in reply to Bill_Gunn

Keep us posted, I tried it but didn't find it very successful for me (maybe I didn't give it long enough) but as it wasn't working after several days I was too uncomfortable to continue and it took a lot to get rid of the back up ! :/

I guess we are all different. x

Loulou62 profile image
Loulou62

HAve been taking Prucalopride for the last year. The initial side effects were drastic. Terrible headaches starting and coming off it. Now on linaclotade. Again side effects have been quite drastic but will stick with it and see what happens

Loulou62 profile image
Loulou62

Sorry. Yes linaclotide is available in UK on prescription

ritagreenway profile image
ritagreenway

Hi - I was presecribed Linoclotide by y GI consulatant about 18mths ago and had to wait a week for the pharmacy dept at a teaching hosptital to order it in. I personally found it didnt help my constipation but it did reduce my symptoms of bloating.

ggerry profile image
ggerry

I started it today and had some minor results, leaky running like not much poo. they say it takes 4 to 5 days . I have also taken last night 17 gr rextolax I'm gas up my bowels are not empty, but we will see tomorrow let you know..

NailQueenxo profile image
NailQueenxo

Yh I have used it, I used it for 2 days straight BUT USE IT ON DAYS WHERE YOU ARE NOT GOING TO BE LEAVING THE HOUSE. because the diarrhea was extreme. It didn't help me because it just didn't clean out my system really. AND BE PREPARED TO EXPERIENCE PAINFUL (AND I MEAN PAINFUL) CRAMPING AT NIGHT. it works by pushing out all the waste. good luck x

ggerry profile image
ggerry

yes I started with 145 mg only had small amount of diarrhea for five days, doctor put me on 290mg some form Stoll then diarrhea. ? I don't know if that the way its suppose to go or ? talk to my doc today? will post only two days on 290.. if it not leaving form stool behind I'm good with this , only have diarrhea a couple times then nothing till next day?

I'm 73 years old and have and ostomy. I will keep in touch, anyone have any of those symptom's?

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