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Project description of ME/CFS treatment with TNF-alpha inhibitor Etanercept (Enbrel®)

Discussion in 'Rituximab: News and Research' started by deleder2k, Aug 1, 2014.

  1. deleder2k

    deleder2k Senior Member

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    Treatment with TNF-alpha inhibitor Etanercept (Enbrel®) with moderate and severe CFS/ME - an open prestudy

    I have translated some of the project description of KTS-4-2012. Start of study: 2012.02.01 End: 2014.12.31

    The researchers at Haukeland are trying TNF-alpha inhibitor Enbrel, including some of the patients that did not experience effect after B-cell depletion with Rituximab.

    Hopefully they will release the results this autumn or early next year.

    I am sorry if some sentences are difficult to understand. My knowledge of English is limited, and I know nothing about medicine.

    Source (In Norwegian): http://totoneimbehl.files.wordpress.com/2012/05/kts_4_2011_protokoll_tnf-alfa-hemmer.pdf





    I hope someone could care to comment.
    Last edited: Aug 1, 2014
    nandixon, MeSci, NK17 and 17 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Thanks again, @deleder2k, for bringing us the news from Norway. Very interesting!
    aimossy, WillowJ and deleder2k like this.
  3. Firestormm

    Firestormm Guest

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    So this project end at the end of this year and has been running for 2 years. Presumably by Fluge and Mellor? I guess so.

    Thanks. I can't recall knowing about it before. Nice to see they are trying something to see if it might be of help for those who don't respond to Ritux.

    Look forward to hearing the results - and to seeing any more new relating to aetiology.
    aimossy likes this.
  4. Bob

    Bob

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    Thank you Deleder :thumbsup:
    aimossy likes this.
  5. fibrodude84

    fibrodude84

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    I have been on Remicade which is an anti-TNF for crohns but fatigue hasn't improved. I'll be interested to hear about this study.
    snowathlete likes this.
  6. deleder2k

    deleder2k Senior Member

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    I hope that someone could explain why TNF-alfa inhibitors, like Rituximab will work. Maybe @Jonathan Edwards knows?
  7. Bob

    Bob

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    My understanding is that increased (abnormal) levels of TNF-alpha causes ME-like symptoms.
    So if we have increased levels of TNF-alpha, then an inhibitor might be expected to decrease some of the symptoms in ME, but not address the underlying cause.

    Some extra info:
    http://www.economist.com/node/9507462
    http://www.ncbi.nlm.nih.gov/pubmed/10535608
    Last edited: Aug 1, 2014
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  8. Bob

    Bob

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    NK17 and deleder2k like this.
  9. Ninan

    Ninan Senior Member

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    I've heard of one person getting (slowly) better from Remicade. He tried Enbrel first but had severe adverse reactions.
    Last edited: Aug 2, 2014
    merylg likes this.
  10. snowathlete

    snowathlete

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    Interesting. Anti TNF drugs often used to treat ulcerative colitis too but I haven't been in one before.
    merylg likes this.
  11. deleder2k

    deleder2k Senior Member

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    Yes, it is by Fluge and Mella. I've tried to find something more on the study, but at the moment there is nothing. Maybe someone knows more than I do. I've applied for the Rituximab study, and if I'm invited to the hospital for a "talk" to see if I am eligible to join the study, I'll ask about Enbrel. I'd also like to ask about plasma exchange, and why the study doesn't include it.
    merylg, NK17 and catly like this.
  12. fibrodude84

    fibrodude84

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    Some of these drugs can also cause lupus like syndrome. It's crazy how these drugs can help or hurt. Personally I think one of them kicked in my fibro and CFS.
    merylg likes this.
  13. deleder2k

    deleder2k Senior Member

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    Which drug?
    merylg likes this.
  14. fibrodude84

    fibrodude84

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    Humira
    merylg likes this.
  15. fibrodude84

    fibrodude84

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    But honestly everyone is different. I would not discourage anyone.
    merylg and NK17 like this.
  16. DanielBR

    DanielBR Senior Member

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    Very interesting. And again thx a lot for keeping us updated. I hope, they ll get good results. Again I am impressed, how persistent Fluge und Mella are.

    @deleder2k I wish you all the best and hope, you will be invited to participate in the new phase III study! :)
    merylg, NK17 and deleder2k like this.
  17. Ninan

    Ninan Senior Member

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    @fibrodude84 If everything that effects the immune system (infections, pregnancy, vaccinations, stress etc) can cause ME, then it's not so weird if the drugs that can make us better (immune modulators) also can cause ME in non-PWME:s.

    @deleder2k I've heard rumors from someone who's usually quite informed about Fluge and Mella stopping their work with Enbrel, either due to lack of effect or too many adverse reactions. That was pretty recent, possibly something from the result of this study. I'll see if I can find out more.
    merylg, NK17 and catly like this.
  18. deleder2k

    deleder2k Senior Member

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    @Ninan, that would be great. I hope that's not the case. If they have I hope they know a way to get the 1/3 of patients that did not respond on Rituximab healthy.

    @DanielBR, danke. War mir ein Vergnügen.
    merylg and catly like this.
  19. Ninan

    Ninan Senior Member

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    @deleder2k I heard, about a year ago, that they got almost everyone better. The 1/3 who didn't respond to rituximab got the following treatment:

    First they were checked for thyroid problems. If they had any, they were taken care of and then some of them would start answering to rituximab. The others got either rituximab subcutaneously or Enbrel. Almost everyone seemed to answer to something.

    These are just second hand info from people attending their lectures and it's a year old or more. I sure do hope they publish something soon.
    merylg, NK17 and catly like this.
  20. deleder2k

    deleder2k Senior Member

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    Last edited: Aug 2, 2014
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