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Talk with Nancy Klimas about Rituximab++

Discussion in 'Rituximab: News and Research' started by deleder2k, Dec 19, 2016.

  1. deleder2k

    deleder2k Senior Member

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    Last edited: Dec 19, 2016
    KristenSF, merylg, eljefe19 and 6 others like this.
  2. eljefe19

    eljefe19

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    I'm going to the OMI soon for my first appointment, hopefully to try Rituximab. I'm interested in being tested for this cytokine signature that Dr Klimas talks about as a bio marker for autoimmunity, in hopes of not putting myself through unnecessary side effects and wasting thousands of dollars.
     
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I don't think we have a cytokine signature for autoimmunity, unfortunately. There used to be a lot of talk about Th1 and Th2 balance in the 1990s but then people got interested in Th17 and finally came to realise that none of these subsets seem to have much relation to autoimmune responses. The cytokines that figure in RA are macrophage cytokines involved in inflammation, but in other autoimmune diseases there is no inflammation (e.g. immune thrombocytopenia) and so the same cytokines are not relevant. We have been looking for rituximab response biomarkers for a while now and I am not convinced we are any nearer finding one just yet.
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    @eljefe19 I am just curious, did OMI tell you that they could do some kind of "cytokine signature" test for you as a biomarker to see if you are a good candidate for RTX? If so, this is the first that I have ever heard of such a thing from them and it is not my understanding.

    This is my understanding (and that cytokines mostly just show that there is inflammation which we already know).

    In spite of there not being a biomarker for who is going to be a candidate for RTX, if someone has multiple autoantibodies (via legitimate testing and getting the same results across time and different labs) and these autoantibodies are causing autoimmune mediated problems such as dysautonomia, neurological problems, muscle weakness, etc, then it seems that to wipe out the autoantibodies with RTX is a solid approach and worth trying. (Sorry that was one very long sentence)!
     
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I agree that if there is good evidence for clinically relevant autoantibodies then that is a logical reason to opt for rituximab. However, so far, for the patients with ME treated with rituximab in Norway, presence of autoantibodies has not clearly indicated response as far as I know.
     
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  6. eljefe19

    eljefe19

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    Nobody from OMI told me this, I just assumed from the video that such a thing existed. My story is that I've had some marginal success with Oxymatrine and other immune modulators, but my fatigue and PEM are still too bad for me to work, exercise, or have any kind of real life. To me, Rituximab seems like the obvious next choice for treatment, assuming that autoantibodies are causing the blockage in the PDH recently elucidated by Fluge and Mella, or whatever other issues that are causing my remaining symptoms. I have no reason to believe I will be a responder, I'm just simply willing to take the chance for the chance at either remission or serious improvement.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    Thanks and that is my opinion and my doctor's opinion as well (knowing that there are no guarantees).

    I am purely looking at the presence of multiple autoantibodies vs. whether someone has ME or does not have ME.

    Thanks for clarifying b/c OMI does not currently have a test for a "cytokine signature" that correlates with predicting if someone might be a responder to RTX. I have not yet watched the video w/Dr. Klimas but I intend to soon.

    Do you know if you have autoantibodies or are you just guessing? In my own case, I would never have even considered RTX (b/c I thought it was too risky) until I had multiple confirmed autoantibodies and now the potential risk feels very worth it to me. I've had such a good response to the high dose (autoimmune dose) of ongoing IVIG that it makes me suspect that I will be a responder to RTX (as long as I am not allergic to it).

    Sorry, what is PDH? (Apologies that I have not watched the video yet in case it is something obvious)!
     

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