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Started Rituximab at OMI/Center for Complex Diseases

Discussion in 'Rituximab: News and Research' started by bdonovan, Dec 19, 2017.

  1. Gingergrrl

    Gingergrrl Senior Member

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    Wow, please keep me posted, I really want to follow your journey. I am assuming your insurance from Croatia is not covering this and you will do the Ritux here in CA privately?

    Do you have family here with you? Even though I was not allergic, I prepared for the worst and for the very first infusion, I had someone stay with me for 72 hours after Ritux (alternated three people) but I was never alone.

    I assume your first two infusions will be two weeks apart (Days zero and 14) but then the next one will be at the three month mark so would you fly home and then back to CA?
     
    ivorin and Joh like this.
  2. ivorin

    ivorin Senior Member

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    It's not, but the costs with Genentech's help program don't come out that crazy.

    I have my mother with me, I am unable to care for myself for now, so i will definitely have someone with me :)

    That's exactly the plan. Hopefully I can make it and nothing bad happens.

    I still haven't finalized my decision though, I am scared of using RTX after the trial went negative and what with the story of Olaf Bodden and what happened to him after taking RTX for CFS. I really wish there was more information on who benefits and when, even if Dr. K thinks I am a very good candidate.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    That is good news and I was not sure if you could apply to Genentech if not a US Citizen. If my insurance denies me before I am done, I will be going that route, too.

    I am so glad your mom is with you, that is a relief to hear.

    For me the trial being negative was irrelevant b/c I am doing the Ritux for B-cell driven autoimmune disease and not for CFS. I reached the point in 2015 (prior to starting IVIG in 2016 and Ritux in 2017) that I could not breathe, walk, or eat food. I was researching assisted suicide through doctors in my state b/c my life was basically over.

    When we discovered the paraneoplastic autoantibodies and that I had an illness similar to LEMS (but not LEMS on an EMG) plus Autoimmune POTS and that IVIG and Ritux could potentially improve my case, even my own mother and husband (at that time) felt the risk was worth dying for and in my case, it has paid off.

    My mom has stage 4 cancer now and I was able to walk around hospital today without wheelchair and stayed for seven hours without a single symptom or allergic reaction to anything. The only thing I could not do (because it would trigger a POTS reaction) was bend down to clean up some water that had spilled on the floor so my sister did this. But otherwise, I felt like a normal person all day. But my case may be 100% different than yours. Do you have muscle weakness, breathing weakness or get anaphylaxis? These three were the bane of my existence and they are gone now, even though I still have dysautonomia & POTS.
     
    Last edited: Dec 27, 2017
    pibee, jpcv and ivorin like this.
  4. ivorin

    ivorin Senior Member

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    @Gingergrrl It's beautiful to hear that you made it out of the Hellhole that is existing with these illnesses to a point where you're on the right track to live an actual life, I am very happy for you :)

    I do not have those symptoms, but I do have neuropsychiatric issues that Dr. K thinks are autoimmune in nature, so his hope is those would be solved with the therapy. I wish I could have IVIG before, but I can't really afford it or get it out of my insurance so it is either RTX, or hoping for a miracle. I may just try the other therapy he has given me for a few months and try to get SCIG before I take the plunge, I really don't know. These are the types of decisions that you're not really equipped to handle :/
     

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