The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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A List of Worldwide Verified Rituximab Providers

Discussion in 'Rituximab: News and Research' started by perovyscus, Jul 3, 2017.

  1. perovyscus

    perovyscus

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    I know various sources of rituximab treatments do not wish to be made public, or are operating under individualized circumstances

    For CFS exclusively:

    - That one neurologist in China
    - OMI
    - Fluge & Mella
     
    Last edited: Jul 3, 2017
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Also, don't forget, Rituximab treatment is very common for other conditions, so I assume you are asking for those centers who are willing to give it for ME/CFS. I know of two ME/CFS patients who qualified through another diagnosis they also had.
     
  3. junkcrap50

    junkcrap50 Senior Member

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    How did their treatment affect their CFS?
     
  4. Nielk

    Nielk

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    I was on Rituximab for RA. It did not help me for RA or for ME.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It helped one a great deal but not the other.
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I was approved for Ritux (will have first infusion in 2 wks) and at present I do not have an ME/CFS diagnosis. My doctor at OMI and my mast cell (MCAS) doctor are working in collaboration and my MCAS doctor is actually the prescriber so I can do it at the local infusion center where I have gotten IVIG for almost one year. My circumstances are a bit unusual but both doctors were so impressed by how much improvement I have made from IVIG that they both feel that I have a good chance of being a responder to Ritux (to reduce B-Cell driven autoantibodies). The biggest hurdle was getting insurance approval and it took several months but I got it.
     
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  7. Alvin2

    Alvin2 Senior Member

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    If its shown to be effective for ME/CFS then it should become available from almost any hospital, i believe its a common chemotherapy drug. That said your GP or specialist would have to write the script
     
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  8. Nielk

    Nielk

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    It's not so simple. Even for RA, for the insurance to cover it, you have to show that you have tried a couple of other (cheaper) treatments for RA unsuccessfully before they will accept to cover it.
     
  9. Alvin2

    Alvin2 Senior Member

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    fair enough, but if Fluge and Mella publish a landmark study next year showing huge beneficial effects and Ron Davis provides the mechanism and the cost falls because its off patent you should be good to go.
    And besides if cheaper treatments work then you will be better if they do not then you will have Rituximab to look forward to
     
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  10. Kenny Banya

    Kenny Banya Senior Member

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    For ME, it may be because you didn't get at least 4 infusions over 6 months
     
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  11. Nielk

    Nielk

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    My B cells were monitored and were totally depleted for over a year.
     
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  12. junkcrap50

    junkcrap50 Senior Member

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    Reading the IiME 12 conference summary here, one presenter had an idea on why some people with ME don't respond to Rituximab: "PwME who do not respond to Rituximab seem to have higher sCD23 levels (A surrogate marker of B cell maturity). This suggests that “bad” B cells had not been removed, but were still maturing in the tissues."

    Hopefully, they'll sort it out soon and maybe have a solution like longer treatment on Rituximab or higher doses.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @Nielk I was curious, did your doctor(s) decide not to do the maintenance infusions b/c you had total B cell depletion from the initial two infusions? I have heard mixed things re: this issue (and I do not know the answer and assume it varies from person to person)? My main doctor said that it is possible that I will have total B cell depletion from the first infusion of Ritux (before even doing the second) but that I will be doing the second one regardless (unless I cannot tolerate the first one and then I won't be).

    He initially said that maintenance infusions were not necessary if you maintain total B cell depletion from the two infusions (and that we'd be doing serial B cell testing to monitor this). But after discussing it further, there seem to be studies (I have no idea which ones?) that imply that if you are going to have a remission, then the maintenance infusions prolong the remission and add value (even if you are already B cell depleted). Did your ME/CFS doctor or your RA doctor have any thoughts about this? Thank you in advance for any info.

    @junkcrap50 This is very interesting and thank you for sharing it. I wish I could understand it all a bit better than I do! Is there a blood test (or other test) that shows if certain people have higher sCD23 levels? There must be something in order for them to have this information but I can only assume that it is at the research stage and not for use with patients yet?

    From your link it said:
    which is exactly my situation so I am hoping that I fall into the responder group (but truly no idea if I will).
     
  14. Nielk

    Nielk

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    I had received my first set of two infusions and was ready for my appointment six months later for my second set of two infusions. Before the infusions, I had to get bloodwork done. They called me a day before my appointment that my infusion has been canceled due to zero B cells being present. I was monitored for almost another year and my B cells had not returned.

    I spoke about my experience with Dr. Mella at the IACFSME conference this year. He was surprised to hear about it. It sounds to me like this is not a common occurrence.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Was it an ME/CFS doctor or your RA doc who canceled the infusion? If you remember, did you have insurance approval for the next set of infusions but the doctor refused to write the prescription/order b/c your B cells remained depleted (or was it also insurance dictating the decision)?

    Also, you wrote that at six months you would have had a second set of two infusions. Was it ever considered that you would have one maintenance infusion at the three month point and a second one at the six month point? There seem to be lots of different protocols out there (just for the different autoimmune diseases, not even counting ME/CFS).

    How long ago did you have the Ritux and do you know if your B cells are back now or did you stop monitoring them? I apologize if you have a blog or thread that explains all of this and I am going to try to find it.

    It sounds unusual to me as well but hearing Dr. Mella concur really backs it up (b/c I am still trying to figure out all of the different treatment protocols and scenarios). My understanding is that many people do not experience any benefit from Ritux until the six month mark. I am wondering if you had been allowed to get the additional infusions at the six month mark if you could have still experienced a benefit (either in your RA or your ME/CFS) but of course, I do not know.

    My doctor feels (if I am a responder which we do not know) that I could experience a benefit much earlier than the six month mark b/c I have already done a full year of IVIG prior to the Ritux infusions (so the autoantibodies are already squashed down before we even start).

    Did you have high autoantibodies for RA or other autoantibodies in addition to rheumatoid factor? Thank you so much again for the info.
     
  16. Nielk

    Nielk

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    It was my rheumatologist who prescribed the Rituximab. It was the hospital who canceled the next set of infusions at six months. By the way, Mella concurred that I should not have gotten more infusions with the blood work showing total B cell depletion. The protocol for RA is double infusions six months apart.
     
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  17. Nielk

    Nielk

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    I was diagnosed with RA five years ago. I have symptoms and blood work shows high anti CCP antibodies.
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    How strange that that hospital (I assume the infusion center?) canceled your appt vs. your doctor or insurance. Did you disagree and try to challenge the decision at the time or were you okay with it?

    I'm sorry, I totally misunderstood your prior post and thought that Mella did not concur with the decision. In Fluge & Mella's studies, didn't the patients get Rituximab for over one year (maybe 1.5 years?) regardless of B cell depletion levels?

    I wish I understood all of the different protocols. For Myasthenia Gravis (which I do not have) the protocol is to do one infusion of Ritux every week for four weeks. I wonder why they are all so different?

    Also (and I apologize if you said it and I missed it) but are your B cells back now or are they still depleted? I have heard of cases where they take a very long time to come back but others where they are back within one year or less.
     
  19. Nielk

    Nielk

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    You can read about my experience on this thread - http://forums.phoenixrising.me/index.php?threads/my-rituximab-experience-with-ra-and-me.30834/
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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