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My Rituximab experience with RA and ME

Discussion in 'Rituximab: News and Research' started by Nielk, Jun 13, 2014.

  1. deleder2k

    deleder2k Senior Member

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    It's from the project page for the commencing Rituximab multi centre study at the Regional Committees for Medical and Health Research Ethics web site in Norway. They are upgrading their web site this weekend, but here's the cached version of the site translated:

    https://translate.google.com/translate?hl=no&sl=no&tl=en&u=http://webcache.googleusercontent.com/search?q=cache:dm70TfxtEzwJ:https://helseforskning.etikkom.no/ikbViewer/page/prosjekterirek/prosjektregister/prosjekt?p_document_id=455844&p_parent_id=461996&_ikbLanguageCode=n+&cd=1&hl=no&ct=clnk
     
    Last edited: Jun 20, 2014
    Iquitos, LaPerla, vli and 5 others like this.
  2. Nielk

    Nielk

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    Since my first infusion three days ago, I have experienced some side effects. I had GI issues with nausea for two days along with weakness/light headedness.

    At present, my upset stomach seems to have calmed down but, the weakness (more than my usual) remains.

    All in all, not too bad so far.

    The nurse at the infusion site said that some start seeing improvements in two weeks. From the Norwegian trial though, it seems that ME/CFS have a delayed start to their improvements.

    It will be interesting to see when I will start feeling a positive change. (of course, assuming that I will at all)
     
    MeSci, aimossy, leela and 15 others like this.
  3. deleder2k

    deleder2k Senior Member

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    Almost all patients from the Norwegian study who experienced an effect did it from month 2 to 9.
     
    SOC, Iquitos, vli and 8 others like this.
  4. NK17

    NK17 Senior Member

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    Crossing all my fingers for you @Nielk and hoping this is only a post infusion momentary phase of discomfort.

    From all I've read the responders in the Norwegian study, as @deleder2k has rightly said, had a delayed response, not of the more immediate kind usually seen in RA.

    Let's hope you'll be able to kill two birds with one stone ;)!

    Wishing you a smooth and sustained recovery.
     
    Last edited: Jun 23, 2014
    MeSci, justy, vli and 5 others like this.
  5. optimist

    optimist Senior Member

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    I really hope this can be a potential and affordable cure for all of us! I believe I heard somewhere that this infusion is super expensive if one would take it today and pay for it by your self? Anyone who knows?

    Wishing you all the best @Nielk! And thanks for sharing your experience!
     
    merylg and Nielk like this.
  6. snowathlete

    snowathlete

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    @Nielk I really hope this works well for you. I hope it kicks RA's butt, and ME's too. Wishing you the best, and thanks for sharing your experience; very interesting.
     
    Izola, MeSci, justy and 6 others like this.
  7. deleder2k

    deleder2k Senior Member

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    Yeh, its expensive. A think each infusion is a few thousand dollars worth. Before "copies" of Rituximab show up (US patent is valid to 2018 I think) I think you can expect 5-6 g's per infusion. Expensive stuff.
     
    vli likes this.
  8. Nielk

    Nielk

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    Does anyone know if the first ME patients in Norway to improve on Rituximab were also on Methotrexate?
     
    vli likes this.
  9. deleder2k

    deleder2k Senior Member

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    The first patient that launched the idea that M.E could be treated with b cell depletes were treated with Methotrexate, but not with Rituximab if I am not wrong.
     
    vli likes this.
  10. optimist

    optimist Senior Member

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    @deleder2k Thanks for the answer! Do you, or anyone else, know if it is possible to get infusions in Norway if you pay for it yourself?
     
  11. LaPerla

    LaPerla

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    No, it's not possible to get infusions in Norway, not as far as I know.
     
  12. optimist

    optimist Senior Member

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    How about any country in Europe?
     
  13. LaPerla

    LaPerla

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    I don't think so. I have only heard of Koegelnik.
     
    Iquitos likes this.
  14. optimist

    optimist Senior Member

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    I'm sorry, I don't know that name?
     
  15. LaPerla

    LaPerla

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    A. Koegelnik, California. I think it is some info in the forum if you use the "search" function.
     
  16. Nielk

    Nielk

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  17. deleder2k

    deleder2k Senior Member

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    Not possible. I wish it was though.. Why can't clinics in Europe start treating patients with Rituximab? Some of us have been bedridden for many, many years. The can treat people with psoriasis with this stuff...

    Open Medicine Institute | Collaborative Research to Fast ...

    Dr. Kogelnik works there. Heard its about 5-6k(?) per infusion.
     
  18. optimist

    optimist Senior Member

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    The problem is that if you need to take several infusions over several moths, you would need to move to the states... so that would add up with flight ticket, housing and infusion cost... and the risk of the infusion not having the desired effect.
     
  19. deleder2k

    deleder2k Senior Member

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    It depends on your health situation, but you don't necessarily have to move there. If you receive 1 infusion the 1st day, then the 14th, and then after 3, 6, 9 months. It will cost a lot though. The patent is expired in Europe, so can just pray that the the competitors are ready to launch their version of Rituximab soon.
     
    Iquitos likes this.
  20. Tired of being sick

    Tired of being sick Senior Member

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    Nielk

    Have you ever had your human growth hormone level checked?

    Low levels can make your bones, muscles,ligaments and joints deteriorate prematurely...
     
    Izola likes this.

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