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Incidence of PML & Rituximab treatment

Discussion in 'Rituximab: News and Research' started by Kenny Banya, May 20, 2017.

  1. Kenny Banya

    Kenny Banya Senior Member

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    Can anyone clarify the incidence of Progressive Multifocal Leukoencephalopathy for Rituximab treatment?
    This article states its 1 in 20,000, which is exceedingly rare
    http://www.rheumatologynetwork.com/articles/pml-and-rituximab-what-rheumatologists-should-know

    Someone else mentioned that (of those 1 in 20,000) almost all were taking or had recently taken another immunosuppressant. Therefore, for Rituximab only the incidence may well be less than in 1 in 100,000

    If so, my guess is you probably have greater chance of dying in a car accident.
     
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  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    That`s right, it`s nothing to worry about :)
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    I agree and do not think it is anything to worry about. Thank you for posting the link which I plan to read later. My doctor said the risk of PML is incredibly small and the nurses at the infusion center where I got IVIG for ten months have never seen a case of it (and they do Ritux as a chemotherapy on a weekly basis w/patients who receive other chemos or immunosuppressants at the same time).

    I did the Stratify JC Virus test which shows I have been exposed to the JC Virus at some point in my life (like most people) but on an additional DNA test for the JC virus, I am negative so there is no current activity of this virus. (I don't know if you can compare it to IgG and IgM but I sort of viewed it this way).

    If I can get Ritux approved (still waiting on this one :whistle::whistle::whistle:), am not concerned about PML risk (vs. the risk of anaphylaxis if I am allergic to it and/or the risk of too much fluid at too fast of an infusion speed, if not administered per my doctor's orders).
     
  4. Kenny Banya

    Kenny Banya Senior Member

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    My guess is this is what Fluge/Mella are patenting (as per the CFS antibody paper) - the quantity & speed of dose
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Interesting and if so, then I guess there will be an official ME/CFS protocol and the standard autoimmune protocol and doctors can choose which is the more appropriate version. Mine would have to be tweaked regardless b/c I cannot tolerate a fast infusion speed (of anything, even plain saline).
     
  6. Kenny Banya

    Kenny Banya Senior Member

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    How has your treatment turned out?
     
  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    No response unfortunately!
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    @Marky90 Please forgive me if I have asked you this and forgot your response but did you have known autoantibodies on blood tests prior to Ritux, or did you not have this info at all, or did you know that you did not have autoantibodies but decided to try Ritux anyway? Thanks!
     
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    No autoantibodies on standard tests is all i know.. :)
     
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  10. Kenny Banya

    Kenny Banya Senior Member

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    This may 'align' with the Fluge Mella paper on autoantibodies and RTX responsiveness, but I am guessing standard tests don't show the AAs that correlated to responsiveness in said research
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I wonder about this too and if part of the reason that @Marky90, and many others, were not responders were b/c they did not have auto-antibodies to begin with (vs. another cause of their illness). Standard blood tests (even by rheumatologists) do not check for the obscure auto-antibodies and the Cell Trend tests are only available from one lab in Germany at this point (to the best of my knowledge).

    It was only b/c I had some blood sent to Mayo for different panels that I learned I had the VGCC Calcium Channel auto-antibody, etc. I would not be fighting for Ritux in the absence of solid proof that I have these auto-antibodies and it is the reason why I have such a strong feeling that I could be a responder and makes it worth the risk to me.

    I was curious @Marky90 what led to your decision to try Ritux without knowing you had confirmed auto-antibodies? (If you are comfortable sharing this info of course)!
     
  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Sure :)

    As a side, it`s possible that long lived plasma cells drives the disease, not the b-cells. So I have not ruled out autoimmunity. Another possible scenario I guess is some kind of inflammation process, as i have some double positive expression on a lot of my t-cells + some weird findings in my bone marrow. I would love for the hospital to continue to look into this, but they just send me away. Im going to try again though, and I consider filing a complaint about them leaving me in limbo.

    Why did I go for rtx without proven auto-antibodies? Couple of reasons. First off, auto-antibodies was not a requirement in the Haukeland-studies, and as the drug is safe and response rate looked good, it was the best/only option for the given diagnosis. Secondly, I was losing ability to study, work, be a normal boyfriend, perform music at a rapid rate, so I was desperate and willing to try anything that made scientific sense.
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    Marky, if long lived plasma cells drive the disease then would Ritux not touch those? For some reason, this stuff continues to confuse me! I wish I understood which parts of autoimmunity are reduced/attacked by IVIG vs. RITUX? Would the auto-antibodies in the plasma cells be what the IVIG is reducing?

    Can you explain more re: the T cell issue and weird findings in your bone marrow? Did you have a bone marrow biopsy? I hope you can get the hospital to follow through and explain this all to you.

    Makes sense and I do not judge your decision in any way. I am just curious who has tried it, and if they were even partial responders, then which auto-antibodies they had (if any). I do consider it high risk for allergic reaction and other infusion reactions (and a few other things) but none of this will stop me if approved by insurance.
     
  14. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    LLP`s don`t have cd20 receptors on their cell surface, so no, they wont be washed out (at least not directly).

    With regards to the t-cells.. Uhm, there were like something called double positive CDRO on a third of my t-cells. They dont know if thats clinically relevant, but they were apparantly doing a study on it with me included. Not heard anything.
    I had some dysplastic cell types in my marrow, but not enough to qualify for e.g. MDS, which i dont fit the picture for anyway. However, you are not supposed to have that, so.. Well what can i do xD

    IVIG for autoimmune diseases is not supposed to make any sense, but there is one hypothesis that it might work by washing out bad igG by occupying the cells used for prolonging half-life.
     
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  15. alex3619

    alex3619 Senior Member

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    The big risk with Rituximab is a severe allergic reaction during infusion. While that can typically be controlled it might also mean you will be denied further treatment. That denial of treatment is, to me, the biggest risk, even though I understand why they would have to deny treatment.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Marky90 and want to make sure I understand... so long lived plasma cells do not have the CD20 receptors for Ritux to target so they remain intact? So this means that some B Cells are not killed? Is this correct?

    Am not sure what double positive CDRO is but if you had dysplastic cells in your marrow (even if not MDS), does this mean they were considered pre-cancerous? If they are doing a study with you in it, is there a study coordinator that you can contact for an update?

    There are lots of theories re: IVIG in autoimmunity and at this point, all I know is that it greatly helped me even though I am not sure why!

    I agree that allergic reaction during or after infusion is the biggest risk and it does scare me. I know if it happens, they stop the infusion, give IV Benadryl and steroids (and would give Epi if needed, depending how bad it is). If it was minor and controlled with just Benadryl, the infusion center where I get my IVIG said that they will restart the Ritux infusion at a slower speed. I guess if it was major, then you would be done.

    A ridiculous thing here with the insurance companies is that they do not want to approve someone who is an allergic risk to have first Ritux infusion in hospital. They prefer you have first one in outpatient infusion center and if you have a bad reaction, only then would they let you try it in hospital. (This is in general from the nurses experiences at my infusion center. I still have no answer re: my case whether I am approved at all, let alone the hospital part, and remain in limbo).
     
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  17. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    @Gingergrrl all b-cells in blood go away. B-cells can make LLPs, which are b-cells, but dont have cd20 and cd19.

    They were considered benign and nonspecific due to the overrall clinical picture (with platelet counts etc). Im gonna do another bone marrow follow up so well see then (although its uncomfortable to say the least..o_O) Probs not cancer related as id be dead by now i think.

    Yeah Ivig is intriguing, too bad no one looks into it
     
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