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 Anyone Else Scared of Rituxan?

Discussion in 'Rituximab: News and Research' started by Misfit Toy, May 25, 2015.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I am so happy that Rituxan is helping some with ME/CFS, but I don't know...the thought of taking a chemo type drug for this illness is unnerving.

    Does anyone else feel the same? Maybe it's just because I have a hypersensitivity to meds and have other immune diseases, but it just seems so....drastic.

    Again, I am happy it works for those it works for and YAY, but wow....it's a little scary.
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hope the studies being done on it can work out who is most suited to this treatment .

    At the moment i dont think an mecfs diagnosis with current criteria would be accurate enough to work out who is suitable for rituximab . Hopefully thet get it sorted and also have alternative treatments for those who dont fit criteria for rituximab .
     
  3. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I think it would definitely be a drug where you need a lot of blood tests and B cell info on. I for one would never do well on it because of my other conditions. I don't think it's for everyone and it's a super drastic med.
     
  4. Daffodil

    Daffodil Senior Member

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    a doctor i spoke to once said it will cause some unnecessary deaths in CFS patients
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    To me, it's an absolute, "I'm dying, can't function at ALL" last resort.

    I get taking it, I do.

    I have serum sickness right now from Enbrel, a biologic, with black box warnings.

    These meds freak me out.
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I believe i have ongoing infections so not keen onknocking out a part of my immune system. I think neutropenia is ccontraindicated for rituximab .

    Im on abx more than off for sinusitis and viral symptoms when off antivirals with my last stoppage of antivirals getting shingles . So for me it would be a no.

    I'm sure others with high inflammatory markers and autoimmune tendencies and no need for abx or avs are probably a good fit for rituximab .
     
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  7. Misfit Toy

    Misfit Toy Senior Member

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    I have the autoimmune component, along with an immune deficient component so that makes it really confusing.

    I get infections and also have Sjogrens. I make hardly any lymphocytes and have non HIV AIDS so I have a feeling this would be a no go!
     
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  8. 5150

    5150 Senior Member

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    The really scary part to me, would be how it might blow out kidneys already overstressed from all other meds.
     
  9. funkyqueen

    funkyqueen Senior Member

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    It is obvious that a patient, that will take Rituximab should be fully aware of the risk / benefit.

    He should know that it may had, because of it, PML, Steven Jhonson syndrome, and as like any chemotherapy, it increases the risk of cancers / cancer recurrence of 15 to 30% (yes, I know Ritux is more an immunosuppressive treatment as chemotherapy, none the less it is also a chemo;-)). (non-exhaustive list)
    It is not aspirin, that's obvious, but then I think that everyone, knowingly, should be able to have the choice to access to it or not.
    Should talk about my idea to BigPharma;-)

    Otherwise, I'll be curious to know more about what your doctor told you, Daffodil ?
    Has he developped, or has he just said it without tell you more?
     
    Last edited: May 26, 2015
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  10. Daffodil

    Daffodil Senior Member

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    @funkyqueen ..a doctor was just remarking that if someone got certain infections while on rituxan, they could die
     
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  11. Folk

    Folk Senior Member

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    Is that doctor by any chance known here?
     
    Last edited: May 26, 2015
  12. Sasha

    Sasha Fine, thank you

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  13. halcyon

    halcyon Senior Member

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    It's not a controversial statement, a fatal reaction to the infusion is a possibility.1 In addition, there is a risk of developing a fatal infection during treatment.1 2 3 With that said, I have no idea what the actual incidence is of fatal reactions. I imagine it's low.
     
    Last edited: May 26, 2015
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  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Google rituximab and contraindications there are many infectious contras herpes zoster, cmv, hepatitis and many other active infections. Im guessing immunoglobulin defiencies , neutropenia ? ?
     
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  15. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Last edited: May 26, 2015
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  16. adreno

    adreno PR activist

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    It's only reasonable to be worried about any drug with serious risks and side effects. It always comes down to a cost-benefit analysis. At the moment I wouldn't risk it, but I understand if others would.
     
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  17. jeff_w

    jeff_w Senior Member

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    Yes, I'm scared of it.

    But I'm also scared of the consequences of not trying it.
     
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  18. msf

    msf Senior Member

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    From a patient's point of view, the Rituximab trials seem kind of back to front: it has not yet been established whether ME is an autoimmune disease, an infectious one or both; Rituximab is contraindicated in the case of some infections; the evidence for it being a autoimmune disease rests, in part, on the fact that some patients respond to Rituximab. I would be interested to know whether Rituximab has been used in any other diseases without a specific target in mind.
     
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  19. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Yep, that's one of the biggest issues. Too many subtypes and no clear test or biomarkers to base a reliable diagnosis on.
     
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  20. Daffodil

    Daffodil Senior Member

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    but aren't most recoveries with rituxan pretty short-lived?
     
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