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Invest in ME/Prof Jonathan Edwards statement on UK Rituximab trial, 30 July

Discussion in 'General ME/CFS News' started by Sasha, Jul 30, 2013.

  1. Marco

    Marco Old blackguard

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    Not an uncommon situation for a 'marker' such as reduced NK cell activity which is also impaired in depression.

    But at least there's a theoretical rationale that implicates microglial activation in many if not all ME/CFS symptoms including 'fatigue' :

    http://iospress.metapress.com/content/j734l6pn276k5711/
  2. Cheshire

    Cheshire Senior Member

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    @Jonathan Edwards


    A serum protein electrophoresis test revealed that I have a monoclonal spike.*


    Given that

    - (if I understood correctly) I am young to get such a spike (40 when discovered),

    - and that rituximab is sometimes used to treat myeloma,


    do you think there could be a link between this monoclonal spike and my having ME/CFS or is it just a coincidence?


    Thanks a lot for all that you do for us.



    * Meaning that I'm at risk to get a myeloma
  3. Kati

    Kati Patient in training

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    The standard treatment for multiple myeloma is not usually Rituximab, but usually high dose chemo, and stem cell transplant (autologous). A drug called bortezomib has shown good hope also.

    The fact that you have been screened and getting early care is a good thing. Hopefully with close monitoring you can have timely treatment when time comes.

    Best wishes.
  4. Jonathan Edwards

    Jonathan Edwards Board Member

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    Dear Cheshire,
    I don't have any hard evidence on which to base an opinion, but my instinct would be that your ME/CFS is due to a disturbance of B cells that has thrown up this monoclonal spike. It may not be this spike that is making you feel ill. I have previously seen a monoclonal spike associated with symptoms that got better with rituximab despite the spike staying the same. This may seem confusing but it was what I expected because in this case it was an IgM spike that did not fit for the symptoms. Our understanding of autoimmunity is that several B cell clones signal to each other and that the clones that keep an illness going are probably not the ones the actually cause the symptoms.

    Monoclonal bands turn up quite often in autoimmune disease and it is hard to say whether they are from the cells that get things started or whether they are a spin off. What makes things difficult to interpret in an ME situation is that this is not (at least not yet) officially an autoimmune disease. So its all rather speculative.

    Myeloma does not respond particularly well to rituximab in many cases because the myeloma cells have reached the plasma cell stage, which is no longer susceptible to rituximab (it has lost CD20). However, I have a myeloma patient who has done very well from the point of view of arthritis and monoclonal band with rituximab.

    I guess that if I had very severe fatigue and a monoclonal band I would get one of my colleagues to give me rituximab - I would have to sign a piece of paper to say that all the consequences were my fault and pay for the infusion I guess, but I think I could swing it. But that is very different from recommending it to someone else. There are too many unknowns just at present, although this is changing quite fast.

    One thing about the treatments used for true myeloma, like bortezomib and cytotoxics, is that they really only work on malignant cells that are out of control because of DNA translocations etc. If you have no evidence of such cells then maybe the cells making your band are benign cells that would be better targeted with something like rituximab, but I really couldn't say anything specific about that. The down side is that if the cells making the band are resistant to rituximab all the drug may do is get rid of useful B cells, leaving more room for the band to increase. I have not seen that happen, but this is a complicated situation.

    Now that I am retired and no longer hold registration as a medical practitioner it would be wrong for me to give any formal advice on treatment. However, these would be my general thoughts.
    Ninan, taniaaust1, daisybell and 5 others like this.
  5. Cheshire

    Cheshire Senior Member

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    Thank you very much for taking the time to answer my questions. Understanding a bit better is really helpful. My hematologist is very dismissive; I can’t ask her anything…

    That’s why I can’t do anything now. I have had a myelogram that showed no malignant cells, so I guess there’s no emergency… I hope your trial will bring some answers, and the numerous unknowns will diminish!

    Thanks again, I really appreciate.
    NK17 likes this.
  6. Min

    Min Senior Member

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    Great news!


    10330303_10152113568057507_224737304741054272_n.jpeg
    taniaaust1, Valentijn, NK17 and 3 others like this.
  7. Bob

    Bob

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  8. NK17

    NK17 Senior Member

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    These are the kind of news that we need!

    Let's keep up the good work pals, we need more trials and biomedical research funded allover the world, because ME is allover.

    We're all in this TOGETHER ;)
    Last edited: May 15, 2014
    Blue, Min, rosie26 and 2 others like this.
  9. Min

    Min Senior Member

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    IiME statement:

  10. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Who can join this trial? How will they select people??
  11. Snow Leopard

    Snow Leopard Senior Member

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    Ambrosia_angel likes this.
  12. Jonathan Edwards

    Jonathan Edwards Board Member

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    Dr Cambridge is in charge of the laboratory side of the studies being carried out at UCL but please do not contact her about the trial as she is not herself medical and not in a position to comment. Similarly, secretarial staff at the Bloomsbury Rheumatology Unit will not be in a position to provide information.

    While I fully understand and welcome interest in the proposed trial from contributors here I think people will understand that until the protocol for such a trial has been worked out it would be inappropriate to say more than has been made public by IiME. I think contributors will understand that in order for this to be a scientifically rigorous study, patients will need to be selected from those already under the care of clinical services with established referral patterns. As has been discussed on this list before, it would be inappropriate to recruit patients on the basis of self-referral. ME is too complicated a problem for that to be viable. The Bloomsbury Rheumatology Unit does not itself have an ME referral service so patients should not ask to be referred to the Unit. The proposed trial is expected to recruit patients under ME specialists with whom UCL is collaborating but no firm decision has been made as to how many from which services and I think it would not be in anybody's interest to say more.

    I realise that this may disappoint some people. However, perhaps I could put things this way: The reason why we have not had more trials of this sort set up so far in ME is that they are so difficult to design that it verges on the impossible - because of all the unknowns. It is essential that any proposed trial is set up in a way least likely to fall foul of all the various obstacles. That will necessarily involve taking care not to introduce any possible bias and that may involve limiting what can be made public in advance.

    Best wishes to all.
    Ninan, taniaaust1, A.B. and 7 others like this.
  13. Ambrosia_angel

    Ambrosia_angel Senior Member

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    Thank you Johnathan. I guess everybody would want to do the trial. Is there any way I can get the drug administered through a private doctor?? How does it work if I wanted too? Is it expensive?
  14. Kati

    Kati Patient in training

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    @Ambrosia_angel this is a drug that costs over 6000$ a dose. It has applications in rheumatology, for instance, second line treatment (or third) for rheumatoid arthritis, and oncology (lymphomas) but it is not a drug that has been tried for ME other than by Dr Mella/Fluge, and a physician who is offering treatment in California.

    Where I live in Canada, physicians are not at liberty to administer such drug off-label, becuase it requires a specialist to thread carefully with it (it has infusion related side effects, some of which can be quite serious) and it requires competent staff to administer it ( you can't do it at home).

    i have great trust in Dr Edwards in running a rigourous trial with Rituximab, and hope that Dr Mella and Fluge discuss how the original cohort fare today, ie how many are recovered, how many have not. We are still in early phase with this drug, and I am not entirely convinced it will be a wonder drug for us all.
    garcia, taniaaust1, Blue and 2 others like this.
  15. Nielk

    Nielk

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    Would the dosage rituximab given for rheumatoid arthritis be the same as for ME? I have been diagnosed with RA five months ago (ME 11 years) and so far the meds they have put me on are not working. I will be trying to convince my rheumatologist to try rituximab for me. I'm just curious if the dosage would be the same?
  16. Ambrosia_angel

    Ambrosia_angel Senior Member

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    That's out of the question for me then...
  17. Kati

    Kati Patient in training

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    Genentech (the drug company)has a very generous patient assistance program. i didn't pay a penny, because how many of us on disability payments can afford 6 doses of that?
    taniaaust1, Sushi and NK17 like this.
  18. Kati

    Kati Patient in training

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    Yes Nielk, I have received the dame dosage as RA pts however the scheduling might be different.
    NK17 and Nielk like this.
  19. Jonathan Edwards

    Jonathan Edwards Board Member

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    Dear Nielk,
    The dosage for RA would as far as we know be suitable for ME - the Norwegians used this as a guideline. If you did receive rituximab it would be of great interest to know if your 'ME' symptoms also improved. I am also interested to know whether the diagnosis of RA was made because you had a new set of symptoms or signs or whether these were the same but some new tests had been done? We know that the autoantibodies in RA can be present for at least ten years before joint symptoms occur.
    vli, NK17, aimossy and 1 other person like this.
  20. Nielk

    Nielk

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    Thank you for your reply @Jonathan Edwards

    My RA diagnosis was based on new symptoms and new findings on bloodwork. I was diagnosed with ME/CFS 11 years ago by Dr. Derek Enlander in N.Y. I have had my ana tested repeatedly with showed negative. About a year ago, I started having swollen hands with pain. This was followed by a positive ana result. The pain increased with some shifting in my fingers. I was finally diagnosed by a rheumatologist with high anti ccp although negative for RA factor. To confirm the diagnosis, I had an ultrasound of my hands which showed remarked inflammation in my wrists and two knuckles on each hand. My exhaustion/weakness has increased since this new diagnosis and all my other ME/CFS symptoms remain.
    vli, NK17 and aimossy like this.

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