Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Is there any way I can be treated with rituximab privately?

Discussion in 'Rituximab: News and Research' started by veganmua, Sep 18, 2015.

  1. veganmua

    veganmua Senior Member

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    London, UK
    I am in UK, but willing to travel if necessary.
     
  2. Kati

    Kati Patient in training

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    Hi @veganmua contact Open Medicine Institute near San Francisco, California
     
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  3. aquariusgirl

    aquariusgirl Senior Member

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    veganmua... a couple of ppl on this site have done ritux IVs with OMI.. including Kati above... also funky queen is doing them now
     
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  4. Sallyagerharris

    Sallyagerharris

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    Berkshire UK
    How long do you need to be in the US for the treatment?
     
  5. Folk

    Folk Senior Member

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    @Sallyagerharris you probably would have to be travelling back and forth. I'm not so sure but I think it's one infusion each 3 months. And it's 4 or 5 infusions. (I might be wrong with the numbers but still, it's not a treatment that you can stay there for, the infusions are spaced)
     
  6. deleder2k

    deleder2k Senior Member

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  7. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Hi @veganmua
    I am in uk also.
    A few swiss clinics.will do it....will let you know.when i get final confirmation...prices etc.
    Usa likely cheaper.
    Did you hear back from OMI?
     
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  8. deleder2k

    deleder2k Senior Member

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    What Swiss clinics? The price in USA is extreme. I would say at least 40,000 quid for a year of treatment. I would guess that most clinics in Europe would charge half of that.
     
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear veganmua,

    As the person who established that rituximab is useful in autoimmune disease I would actually advise against this. Rituximab is very unlike most drugs in that you have to understand how to use it in considerable detail in order to give it safely and effectively. Protocols exist but in RA use of protocols has led to a lot more adverse effects than necessary because many rheumatologists do not understand how the drug works. If you find a private clinic in Europe prepared to give it you should think long and hard about whether they actually know what they are doing. My suspicion is that any clinic prepared to give rituxmab privately in ME is very likely not to know what they are doing.

    The fact that nobody is using it in the UK yet, even in a trial, is largely a reflection of the fact that physicians are not confident that they know enough about what they would be doing to justify subjecting patients to the potential risks.
     
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  10. Sasha

    Sasha Fine, thank you

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    Doesn't this raise the question of what's going to happen if the clinical trials prove that rtx is beneficial for PWME? If even rheumatologists don't always know how to use it for RA patients, how will we be able to get treated?
     
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  11. gregh286

    gregh286 Senior Member

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    Hi.
    I think most of us are in position to weigh up risk v benefits.
    The thought of being unable to try it until 2021 is unbearable....as it appears to provide sigificant benefits.
    Understandbly the medical profession has a duty to protect people but there is a time factor here. Every day is a day lost.
     
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  12. deleder2k

    deleder2k Senior Member

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    @Jonathan Edwards, does that mean that the dosing regime used in the studies in Haukeland should not be used as a template for rheumatologists and oncologists after the drug has been approved? How should clinicians tackle this? And what can go wrong if one is treated with the same dosing schedule as used in the studies if the hospital gives Rituximab and other drugs on a weekly basis and is monitored by doctors?
     
  13. A.B.

    A.B. Senior Member

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    An oncology hospital department should have experience with Rituximab. That's where one could go. I'm not sure what's an acceptable solution for bed bound patients.
     
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  14. Scarecrow

    Scarecrow Revolting Peasant

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    Scotland
    I just hope that somebody, somewhere is thinking ahead to 2018. If the Norwegian Phase III trial produces anything close to a 50% response rate and mostly major responders, the demand for treatment is going to go ballistic.
     
  15. Sasha

    Sasha Fine, thank you

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    Yes, exactly - we need to be thinking about this now.

    What can we do, @Jonathan Edwards?
     
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  16. gregh286

    gregh286 Senior Member

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    You can buy it on goldpharma at 2k a pop.
    All you need now is mad scientist to slip it into your arm.
    Would it be actually worse than a diet of alcohol, drugs and tobacco products that is abused.in general populations.
     
  17. deleder2k

    deleder2k Senior Member

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    You could have an allergic reaction and die. That is why you need to have the infusion done at a hospital.
     
    Gingergrrl likes this.
  18. gregh286

    gregh286 Senior Member

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    Wasnt serious about the mad scientist bit.
     
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  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The problem will be the same as it is for RA. In the UK rituximab is used reasonably intelligently in RA and things have gone well. In some other European countries it has been used less intelligently and there have been more problems. University hospitals where there are staff with experience in haematology as well as rheumatology are likely to manage well. Private clinics are an unknown.
     
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Sorry gregh286 but you have absolutely no idea how to weigh up the risks and benefits. Even I am unable to do that and I invented the treatment.
     
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