Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)
Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway...
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EBV in bone marrow of rheumatoid arthritis patients predicts response to Rituximab

Discussion in 'Rituximab: News and Research' started by Marco, Nov 22, 2011.

  1. bel canto

    bel canto Senior Member

    Hi, Nielk - my immediate family has many autoimmune conditions, as well as me/cfs. Rheumatoid arthritis , primary biliary cirrhosis (pbc), scleraderma, multiple sclerosis, IBD/crohn's, pulmonary hypertension, vitilago, and an extremely rare form called castleman's disease.

    The liver enzymes can be elevated by the pbc, but we also have a case of long-term elevation of alkaline phosphatase, which can be related to the liver, or to bone.

    And diabetes can be the type 1 autoimmune form even when it begins in adulthood.

    Please feel free to contact me if you want to specifically discuss multiple autoimmune conditions. Hopefully, that will not be the case for you. Good luck!
    merylg and Nielk like this.
  2. Pyr2


    I know this post is old, but the topic is still very current, at lest for me. I have a bone marrow cytogenetics test which showed a "lymphoproliferative disorder" and yet the actual bone marrow biopsy was fine as was flow cytometry.
    A more current PCR test for EBV on blood was negative.

    So its in my marrow but not in my blood by PCR. Yet on blood immunofixation it shows a polyclonal IgM, which is consisent with a chronic inflammation or infection.

    Given that, do I qualify for rituximab? I am going to a hem/onc next week to see.

    How did I get here? Mono 1986. Then weird neuro/cognitive/immune symptoms started in 1999. Went through exhaustive testing which showed the then unexplained cytogenetics test. Was told to go on with my life, its nothing. The symptoms subsided so I did. At the time I was not tested for ebv and no one considered the prior mono. Fast forward to 2013. Reactivated ebv and crash of symptoms (mostly neuro, cns, pain neuralgia- not to much fatigue) still here two years later. SOMETHING is going on. If only I could get myself to the right researcher!!!! Would love to hear from some of you scientific types!!!!

    It is interesting b/c you wonder if bone marrow analysis were standard, would they find more of us who had mono as a teen with these bone marrow abnormalities!
    snowathlete and heapsreal like this.
  3. Kati

    Kati Patient in training

    Hi @Pyr2 first I am sorry to hear about your current diagnosis.

    I wonder where you are from (which continent) and what precipitated I am interested to hear what the hematologist will tell you next week, please update us.

    As for whether Rituximab could be helpful, it would not hurt to ask with bringing relevant papers to the physician but only if they are open to that. It is possible they have a better treatment option for your specific condition.
    It is possible they could add Rituxan to that as well.

    Personally I would be all for getting a bone marrow biopsy and further invasive testing such as cerebro-spinal fluid analysis. We have the technology to get it done.

    Best wishes.
  4. Pyr2


    Hi Kati. Well my current diagnosis is nothing more than a lot of you have - basically my dr says I am in the Lerner subset of patients who have a chronic case of EBV. I am in the US (NJ), near some of the best research universities and hospitals, someone should really take up my case, but so far no luck! She says that 30 years post mono and 15 yrs post bone marrow biopsy, if it were something more severe I would be in worse shape or not likely to be here at all. Im knocking on wood and crossing my fingers, and throwing more than a few prayers up to God that she's right.:)) I will definitely update. Thanks for answering.

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