The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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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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