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Solve webinar 17 March: Dr Susan Levine - “The Future of ME/CFS”

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Mar 5, 2016.

  1. duncan

    duncan Senior Member

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    Interesting that she seems to echo Dr. Enlander's concerns about the potential toxicity of Rituximab.

    She also gets a big Plus from me for mentioning she'd refer some Lyme patients to Liegner.
     
  2. BurnA

    BurnA Senior Member

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    I find it strange rather than interesting.

    The problem is if a doctor comments on something that they don't know much about then I begin to question everything they say.

    Remember Fluge and Mella didn't report any serious side effects if their trials, so where is all this safety concern coming from.
     
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  3. Kati

    Kati Patient in training

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    i think that the lack of knowledge and worry that chemotherapy means 'hard drug' or toxic drug is at play here. Targeted therapy that is Rituximab is a beautiful thing because it doesn't affect non-targeted cells, unlike other chemotherapies for cancer which affects fast reproducting cells and give patients all kinds of symptoms and toxicities.

    Then drs get worried about the drug reaction during infusion which is experienced by 75% of those getting it for the first time(my estimation from my experience as a RN) and that resolve by giving Benadryl and hydrocortisone. And in 99% of the cases the infusion can be resumed and completed.

    What is important is that the infusion needs to be given in or near a hospital setting and by experienced staff who knows what to do in case of a reaction.

    Lastly, it is my opinion that a life-changing disease which strips patients of their dignity, of their work and themselves deserve appropriate treatments, diagnostics research that commensurate burden of disease and access to clinical trial using drugs that have the necessary power to knock the disease down. I feel strongly about that. It may not be everyone's cup of tea but it is mine.
     
    Last edited: Mar 19, 2016
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  4. BurnA

    BurnA Senior Member

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    Yes even if rtx was as bad as some people seem to be making out, do they not realise how bad this disease is ? This drug is approved for cancer and RA so why is there such concern for ME?
     
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  5. leela

    leela Slow But Hopeful

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    Oh, the irony...
     
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  6. alex3619

    alex3619 Senior Member

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    My understanding is that most of the side effects, in most cases, of Rituximab, are associations or about Rituximab in combination with other drugs. ME patients may be on other drugs but they are different to cancer patients for the most part. Its not clear what impact Rituximab has that is due to the drug by itself. I guess the biggest risk is if the patient gets a life threatening infection while their adaptive immune system is down.
     
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  7. justy

    justy Donate Advocate Demonstrate

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    I have a clinical dx of Lyme and yes I have a large neurological component, some joint swelling/pain and tingling and numbness. However my ME doc describes the Lyme and co as having caused my ME.

    Yes, again I have joint pain/swelling, hair loss, ulcers in mouth and nose and a positive ANA - Lupus was ruled out.
    IGM + for what? or just a raised IGM? I have a persistently raised IGM.

    Thanks for the run down on what was said.
     
  8. Sasha

    Sasha Fine, thank you

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