IBS plus diarrhoea: NICE approves a new drug treatment (UK)

[charles shepherd]

IBS plus diarrhoea: NICE approves a new drug treatment (UK)

NICE has approved the use of a new drug called Truberzi, also known as eluxadoline, as an option for treating people with irritable bowel syndrome (IBS) plus diarrhoea where this has not responded to other drug treatments

More info here:
https://www.nice.org.uk/news/article/3-a-day-drug-for-irritable-bowel-syndrome-gets-nice-approval

And here:
http://ccg.centreformedicinesoptimisation.co.uk/files/MTRAC Eluxadoline guidance March 2017.pdf

People with ME/CFS often have irritable bowel type symptoms and it would be interesting to hear from anyone with ME/CFS who has been prescribed this new prescription only treatment

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[MeSci]

IBS plus diarrhoea: NICE approves a new drug treatment (UK)

NICE has approved the use of a new drug called Truberzi, also known as eluxadoline, as an option for treating people with irritable bowel syndrome (IBS) plus diarrhoea where this has not responded to other drug treatments

Dr Charles Shepherd
Hon Medical Adviser, MEA

New drugs are always risky. It can take 20-30 years for adverse effects to become obvious. Not helped by manufacturers being cagey.

 

[charles shepherd]

New drugs are always risky. It can take 20-30 years for adverse effects to become obvious. Not helped by manufacturers being cagey.

Yes, and several side-effects have been reported with this new drug during the phase 3 trials (I have just completed a CPD learning module on this drug!)

However, for some people, where IBS plus diarrhoea is not responding to existing treatment options this can be very disabling and restricting combination of symptoms

So this is a treatment option that could be considered in more severe cases

CS

 

[NelliePledge]

and it is better than having it "treated"by CBT - as IBS is another condition on the medically unexplained symptoms list.......................http://www.nhs.uk/conditions/medically-unexplained-symptoms/Pages/Somatisation.aspx

 

[Tunguska]

So this is apparently a mu- and kappa-opioid agonist (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4874728/)? I could see myself resorting to this at some point provided it has truly minimal or no effects on the CNS (do not want kappa agonists there).

I was hoping to see a trial to compare it with loperamide but all I saw is this laughable self-reported under-dosed study funded by the manufacturer: https://www.nature.com/ajg/journal/v112/n6/full/ajg201772a.html (loperamide actually has effect for me but not at 2mg/6hour, does that make a dent in anyone? and what is with the 22mg/week limit?)

 

[melihtas]

I was hoping to see a trial to compare it with loperamide but all I saw is this laughable self-reported under-dosed study funded by the manufacturer: https://www.nature.com/ajg/journal/v112/n6/full/ajg201772a.html (loperamide actually has effect for me but not at 2mg/6hour, does that make a dent in anyone? and what is with the 22mg/week limit?)

I have been taking loperamide for the past 20 years. My daily dosage varies between 2 to 10 tablets (4mg - 20mg). It only works if I take all the tablets at once in the morning. So, 2mg/6hour does not make any sense to me.

I think 22mg weekly limit is just for there because effectiveness of eluxadoline is comparable to loperamide only at that level. Useless study.

 

[Tunguska]

I have been taking loperamide for the past 20 years. My daily dosage varies between 2 to 10 tablets (4mg - 20mg). It only works if I take all the tablets at once in the morning. So, 2mg/6hour does not make any sense to me.

I think 22mg weekly limit is just for there because effectiveness of eluxadoline is comparable to loperamide only at that level. Useless study.

Exactly, I never take less than 6mg at once otherwise it's a waste of money.

Maybe this study is speaking more than they intended it to, lol. Still, better to have options...

 

[Hip]

Looking at the price of eluxadoline here, $1380 for 120 x 100 mg tablets, I would guess that the NHS are only going to give this to patients who have not found any other drug that works for their IBS-D.

 

[panckage]

So this is apparently a mu- and kappa-opioid agonist (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4874728/)?

I guess it helps just via constipation like opioids? Kratom is also mu and kappa opioid agonist. It helps to harden my stool into something more normal. I take it 2 out of every 3 days with no perceivable ill effects. The main benefits are regarding energy and pain relief.

Really though figuring out my food intolerances (to pretty much everything) has been by far the most important factor in minimizing my ibs-d

 

[Tunguska]

I guess it helps just via constipation like opioids? Kratom is also mu and kappa opioid agonist. It helps to harden my stool into something more normal. I take it 2 out of every 3 days with no perceivable ill effects. The main benefits are regarding energy and pain relief.

Really though figuring out my food intolerances (to pretty much everything) has been by far the most important factor in minimizing my ibs-d

Yep, most of the time if something helps (my case) it turns out to be an opioid agonist in some study. I actually can't remember if kratom helped for this, either memory or I was too messed up.

The other mainstream approach is 5-HT3 antagonists but they don't match up (for me).

The only exception is adamantane (related to amantadine that Hip posts around) I tried recently which works in high enough doses but it has a thousand other effects including becoming a robot so not sure anyone really knows what it does, and it becomes its own problem.

Eventually you always need something with no neuroactive activity so you end up back at square 1 (loperamide).