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Ongoing Prednisone

  • By Christy

    Hi everyone,

    I’m not new to this site nor RA, having been diagnosed about 10 years ago, in my early 50’s. I am curious to know if anyone has had a similar experience to mine as far as problems with finding a treatment.

    I am seropositive with high anti-ccrp numbers, so of course, my rheumatologist started me on biological right away. The first thing he did was give me Prednisone for the short term then, Humira. The Humira brought my White Blood Count too far down, so had to get off of that. Prednisone still on board…. needless to say, I’ve been on many other Biologics, Dmards, etc., all with the same outcome of low white blood count.

    The one thing I continued to stay on is Prednisone…ugh, in varying dosages, sometimes more sometimes less, but it’s always onboard. I’m now trying a very low dose of Plaquenil to see if I can, once again, kick the Prednisone.

    Has anyone else had similar experiences of 1) constant Prednisone onboard, and/or 2) failure on biologics due to low WBC?

    Thank you so much for sharing if you decide to and good wishes for health

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  • By Richard Faust Moderator

    Hi Christy. Sorry to hear you are having these difficulties. Felty’s Syndrome is a fairly rare issue for those with RA characterized by the combination of RA, a low white blood cell count, and an enlarged spleen. You did not mention any issues with the spleen and your doctor should be able to do any necessary diagnostic work. Hopefully others can offer some ideas and personal experiences. Hoping you find some answers soon. Best, Richard (RheumatoidArthritis.net Team)

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  • By Christy

    Thank you for the information. I will definitely ask about this at my next appointment. I’m not sure if my Rheumatologist ever checked for Felty’s Syndrome or not.

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  • By ktinflorida

    Hi Christy. Yes, I had a similar problem. My white count went down to 1.9 and my doctor threatened to put me in the hospital. You said you had been on several bioligics. Were they all TNF blockers or were some B cell blockers? I’m not a doctor and I don’t understand all of this stuff, but the way I understand it is that they have to find the right biologic that blocks the problem cells. For me, the biologic was suppressing my immune system, dropping my white count, but not hitting the right cells. For me, it was the B cells. Now that I am on the right one, my white count bounces between the high side of low and the low side of NORMAL. NORMAL! Something about me is finally NORMAL!

    I hope your situation is just a matter of trying even more biologics and not Felty’s Syndrome. Ask your Rheumatologist to explain biologics, B cells and T cells. It is complex, at least it is to me, but it makes or breaks our treatment success. Maybe you already know all of this much better than me.

    I did get off of the prednisone.

    Good luck.

    KT

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  • By Christy

    Hi KT. I’m so happy for you! I know there are still challenges for you, however, not having to worry about your WBC count must be such a relief. It’s interesting for my situation, as I have been on Humira, Enbrel,Xeljanz, MTX, Orencia, and a few others, all with the same outcome. The exception is Xeljanz which made my Cholesterol shoot up, and that wasn’t good. I so appreciate your comment about the B cells and T cells, and will talk more to my Rheumatologist about these things.

    Thank you for sharing your knowledge

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  • By Kimberly

    Does anyone take Rayos?
    It is time released Predisone. That’s all. It costs a whopping $9400 for a mth supply. Its keeping the swelling and pain at bay while awaiting Orencia to work hopefully. I’ve attempted to stop but symptoms return.
    I’ve not saw on here that anyone else takes it.
    Thx

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