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Treating CFS/ME with TNF-a inhibitors?

Discussion in 'General Treatment' started by Meruem, Dec 29, 2017.

  1. Meruem


    So I was diagnosed with Ankylosing Spondylitis last month.Doctors say that's what's causing my fatigue but after doing some research and spending some time on the AS forums I think that most likely I also have CFS/ME since most people there are at least able leave the house and my current state sounds a lot more like CFS/ME.

    I started TNF-a inhibitors to treat the AS.I also did some research on them for CFS and there's not much just some small studies on Enbrel(etanercept).What I currently take is called Simponi(golimumab).

    Has anyone tried any of these?(Enbrel,Humira,Remicade etc) or at least knows some things about TNFa inhibitors in the treatment of CFS/ME?

    It'd be nice to treat both diseases at the same time.
  2. Oberon

    Oberon Senior Member

    Getting access to TNFa inhibitors is probably very difficult for CFS/ME patients unless they have another diagnosis that calls for them.

    I'm personally very interested to hear about your results in the next few months. Please keep us updated.
  3. ukxmrv

    ukxmrv Senior Member

    Yes, I had access to some Humira about 10 years ago. Only had 3 or 4 injections and it was so long ago I'm hazy on the exact details.

    The injections were good for aches and pains I had in my hands and legs. Also for sore throats and glands.

    It wasn't a cure for my ME sadly but I was grateful for what it did do. No effect on my POTS

    There was a doctor in the UK (Dr Kerr) who was interested in trialing anti-TNFA drugs for ME but he lost his lab.

    Have a feeling that the team in Norway behind Rituximab were looking into this area as well.
    ebethc likes this.
  4. JES

    JES Senior Member

    Not likely to be of much use in CFS/ME. As above poster pointed out, Rituximab, which is another biological immune suppressant, has already been trialed for CFS/ME. Another immune suppressant and cytokine inhibitor, anakinra, was trialed recently for CFS/ME and result came out negative.

    If those common immune suppressants were effective for CFS/ME, one would think there would at least be some anecdotal evidence around the Internet. Immune suppressants in general have limited use in autoimmune diseases, for some they are efficient, but for other diseases like MS they are inefficient in general. And we don't even know yet whether CFS/ME is autoimmune, hence my skepticism.
    jpcv and ebethc like this.

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