Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 2, 2017.

  1. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,197
    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
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,969
    Likes:
    12,815
    Cornwall, UK
    New drugs are always risky. It can take 20-30 years for adverse effects to become obvious. Not helped by manufacturers being cagey.
     
  3. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,197
    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
     
  4. NelliePledge

    NelliePledge plodder

    Messages:
    774
    Likes:
    3,516
  5. Tunguska

    Tunguska Senior Member

    Messages:
    507
    Likes:
    484
    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 likes this.
  6. melihtas

    melihtas Senior Member

    Messages:
    110
    Likes:
    320
    Istanbul Turkey
    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 likes this.
  7. Tunguska

    Tunguska Senior Member

    Messages:
    507
    Likes:
    484
    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...
     
    melihtas likes this.
  8. Hip

    Hip Senior Member

    Messages:
    9,529
    Likes:
    15,104
    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.
     
    Tunguska, MeSci and melihtas like this.
  9. panckage

    panckage Senior Member

    Messages:
    633
    Likes:
    748
    Vancouver, BC
    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 likes this.
  10. Tunguska

    Tunguska Senior Member

    Messages:
    507
    Likes:
    484
    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).
     
    panckage likes this.

See more popular forum discussions.

Share This Page