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Rituximab

Discussion in 'Rituximab: News and Research' started by digital dog, Aug 19, 2015.

  1. digital dog

    digital dog Senior Member

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    Hello,

    I am new to this forum so please forgive me if you are sick to death of people asking about this new wonder-drug (on top of your every day sick-to-death constitution!)

    Has anyone here tried it? Where can I read about your experiences? Also can I get hold of this drug? I'm planning on winning the lottery this weekend and when I do I hope to find a doctor (doctor, nurse, back street criminal) who is willing to inject this into my miserable excuse for a body.

    Is this an option? Are there doctors out there treating patients with this at present?

    I live in the UK but with my millions I could probably travel to just about anywhere. And if I win more than I'm anticipating, you can all come with me if you like.

    Am I allowed to get just a little excited about this drug? I have hashimotos and a family history of lots of autoimmune crap...and of course I'll be minted by the weekend so that probably works in my favour.

    Digital Dog.
     
  2. Scarecrow

    Scarecrow Revolting Peasant

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    Hi, digital dog

    Welcome!

    If you go to the main forum page, just over half way down in 'Treatment and Therapy' there's a section for 'Rituximab: News and Research'.

    A few forum members have tried rituximab. Off the top of my head, I can't think of any existing members who have had great results from it but we had someone join the forum about six months ago very exited about the improvement she had. It wasn't completely clear if she had ME/CFS but she went from being extremely disabled to basically normal - and very exited!!!

    We recently had a brief discussion about getting rituximab privately in the UK since even on a best case scenario it's likely to be many years before ME patients will be able to get it on the NHS.
    http://forums.phoenixrising.me/inde...tential-of-rituximab.38487/page-5#post-627186

    I think it might still be a little early to think about private treatment. To me, it makes sense to wait until Fluge and Mella's Phase III trial is concluded.

    Your foresight and financial planning to fund your treatment is awesome!
     
  3. Sasha

    Sasha Fine, thank you

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    Excellent plan, @digital dog. Glad to know I'm not the only one with detailed plans for my lottery win (the fact that I never buy a ticket is irrelevant).
     
  4. svetoslav80

    svetoslav80 svetoslav80 at gmail.com

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    :lol:
     
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  5. digital dog

    digital dog Senior Member

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    Thank you for pointing me in the right direction. My financial planning is indeed 'awesome.' The fact that, like Sasha, I rarely buy lottery tickets is beside the point. We can but dream.

    I'd definitely give it a go regardless of the side effects. My life is one big side-effect anyway so it's worth the risk to me.
     
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  6. digital dog

    digital dog Senior Member

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    I've had a look and it appears that I won't be able to get hold of this drug for quite some time...unless I get cancer. I've always maintained that if I got cancer I would decline treatment as I am so sensitive to meds and would be quite content in leaving behind all this mess. Now I would be demanding rituximab.
     
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  7. Scarecrow

    Scarecrow Revolting Peasant

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    Just make sure it's lymphoma.
     
  8. digital dog

    digital dog Senior Member

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    'I'm dreadfully sorry to report that you have lymphoma cancer. I know this must be a great shock to you. Would you like some time to yourself to come to terms with this devastating news?'

    'Are you kidding! It's the best news I've had in over two decades. Hook me up now before I keel over in excitement.'
     
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  9. A.B.

    A.B. Senior Member

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    The patient reports are mixed. A few people reported very significant improvements (a Norwegian patient of Fluge/Mella, one person here on the forums), one person had no benefit (one person here on the forum), another person experienced severe deterioration (a soccer player from Germany). We're hoping that the deterioration was an isolated thing but we don't really know because there is so little research.

    In the studies there haven't been any severe adverse reactions and the response rate was about 2/3 so far.
     
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  10. Sasha

    Sasha Fine, thank you

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  11. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Good summary. As a member of Norwegian ME-forums I`ll reveal that some more have reported significant improvements as well. There is no doubt that this is a "wonder drug", for a subset.
     
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  12. digital dog

    digital dog Senior Member

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    Yes thank you Sasha. I think we are on the brink of exciting developments. At least these studies might wake up people to the severity of our illness.

    I can't wait for those psychiatrists, doctors and social workers who label people mentally ill with ME to hang their ignorant little heads in shame.

    I'm not sure it will help me but my biggest fear in life is that my daughter will one day get ill with an autoimmune condition and there will be no treatment. I now believe that there will be different treatments for all the subsets of ME/CFS in the next decade or so.

    ABOUT BLOODY TIME!!!!
     
  13. deleder2k

    deleder2k Senior Member

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  14. halcyon

    halcyon Senior Member

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    As far as I have seen there are about 5 or 6 patients here that have taken it without remission so far.
     
    Gingergrrl and Never Give Up like this.
  15. digital dog

    digital dog Senior Member

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    Thank you for all your posts.
    I appreciate the information,
     

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