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New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

Discussion in 'Latest ME/CFS Research' started by Simon, Jul 1, 2015.

  1. SOC

    SOC Senior Member

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    My daughter and I have the ICC defined illness. She has gone from about a 5 to 9.5 on the PR scale. I've gone from 1 or 2 to 6 or 7, both of us under the treatment of ME/CFS specialists. So it's possible for some of us, at least, to get significant improvement. Our improvements were not natural fluctuations in the illness. We were getting worse before treatment, improved with treatment, stay generally improved on treatment, and regress when we stop treatment.

    I agree this is OT for the thread, so we can quit here. I just wanted to make sure that other patients know that improvement is possible with the right treatments for the particular patient. There is hope for a better QOL.
     
    L'engle and msf like this.
  2. jimells

    jimells Senior Member

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    northern Maine
    It is much the same in the US, even with a very different payment system. A few years ago I took antivirals for 8 months with no effect, including the very-expensive Valcyte. The Medicare prescription drug program paid for them without a peep or any special authorizations, and Medicaid paid most of the out-of-pocket expenses. Of course I did have to travel 1000 miles round trip to find someone to prescribe the drugs, and it was nearly impossible to deal with a physician located so far away, so ultimately I was forced to abandon that line of treatment.

    Meanwhile the local primary care physicians will hardly give me the time of day ("Come back in six months so we can continue the non-treatment"), and the current one has refused to write a standing order for IV Saline at home or the cancer infusion clinic (for POTS). Meanwhile the local ER physicians will order IV saline anytime I show up and ask for it. Unfortunately that means going to the ER and maybe getting a bed right away, or maybe waiting a long time.

    Half the doctors I have seen tell me they can't help and they don't know who can, like your GP, and the other half tell me I'm not sick - I just need exercise and therapy.
     
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  3. L'engle

    L'engle moogle

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    So doe anyone know if the rules of the trial mean we have to wait till 2018 to hear anything at all, or if some information might be legitimately released sooner? (not leaked or rumored but openly reported)
     
  4. BurnA

    BurnA Senior Member

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    It's blinded until 12 months after the last patient gets the last infusion. I wouldn't expect to hear anything before then, and probably 6 months after that.
     
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  5. L'engle

    L'engle moogle

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    Thanks @BurnA So I guess that is next May at the earliest or likely next November. Thanks!
     
  6. BurnA

    BurnA Senior Member

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    Sept 17 is approx 12 months after the last patient gets last infusion so I would expect news sometime Q1 or Q2 2018.
     
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  7. L'engle

    L'engle moogle

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  8. BurnA

    BurnA Senior Member

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    2017. The study commenced in 2015 but the last patient got their first infusion sometime around September I believe. So 24 months from Sept 2015 to wait for unblinding then add 6 months for write up etc.
     
  9. L'engle

    L'engle moogle

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    Oh OK, for some reason I read last patient's first infusion. OK so basically have to wait out the whole thing. Thanks! 2.5 years of Jeopardy music on loop.
     
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  10. John Mac

    John Mac Senior Member

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    Hopefully we might hear something from the cyclophosphamide trial before then
     
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  11. BurnA

    BurnA Senior Member

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    Yes we should, this should be complete by end 2016 so publication early 2017.
     
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  12. perrier

    perrier Senior Member

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    This is extraordinary. To go from a 5 to a 9.5 and from a 2 to 7!!! Bravo. Is it possible to let me know the name of your treating physician? Thanks very much!
     
  13. SOC

    SOC Senior Member

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    We started with Dr Lerner. After several years we switched to Dr Rey, who is Dr Klimas' associate at INIM.
     
  14. perrier

    perrier Senior Member

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    Where is Dr Rey? I'm Canadian. Also, would be too intrusive to inquire what stuff you are on?
     
  15. perrier

    perrier Senior Member

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    And of course, the question becomes: why aren't all folks getting these lifts?
     
  16. SOC

    SOC Senior Member

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    Many who see these doctors and are able to follow their treatment plans are getting substantially improved quality of life. Others don't, however. I doubt all of us have the same illness, so treatment that works for some likely won't work for others. I would guess that those who have a similar pattern of illness to that of my family and are able to tolerate all the treatments would have a similar result, but who knows?
    Dr Rey is with The Institute of Neuroimmune Medicine (INIM) at NOVA Southeastern University in Miami FL. She is not currently taking new patients, but INIM might have another doctor with a currently open practice. The best specialists fill up fast and have long waiting lists.

    I will PM you about the treatments we have taken. Keep in mind this didn't happen overnight. It's necessary to test for abnormalities and try different things to see what works.
     
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  17. RYO

    RYO Senior Member

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    I have often wondered whether a post viral vasculitis could be a potential mechanism to explain the varied manifestations of ME. Myalgia, fatigue, fevers, and arthralgia are all reported symptoms of small vessel vasculitis. My legs chronically ache but much worse with exposure to cold - cryoglobulins?. The skin over my legs more sensitive. After exposure to hot water, there is a transient rash that has the appearance of livedo reticularis.

    It feels like PEM is manifestation of exacerbation of reduced plasma volume. ??? pooling of blood in mesenteric vasculature and lower extremities.

    However, the usual signs of inflammation such as ESR, CRP, complements levels, RF all normal.

    How do we go about identifying the autoimmune antibodies triggering vasculitis or endothelial dysfunction?
     
  18. halcyon

    halcyon Senior Member

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    People like Byron Hyde and Erich Ryall have been saying this for a while.

    You might find Ryall's paper on the Sacramento outbreak interesting.
     
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  19. BurnA

    BurnA Senior Member

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    In Dr. Naths recent talk on the NIH study he said the following :

    I am surprised to hear him say the immune profiles were not measured in these patients. I would have assumed that between Norway, Germany and UCL, that the immune profile of the rituximab patients was well measured.
    Was I wrong to assume this or what was Dr Nath implying ?
     
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The Norwegians were pretty thorough in their immunology. They may not have published all of it because they found very little. It sounds as if Dr Nath may not have talked to them directly, which I would have thought was essential prior to starting a study like this.
     
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