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Thread: ITP and possibly Lupus

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  1. #1
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    Default ITP and possibly Lupus

    Hello,
    This is my first post. My 19 year old daughter has ITP and possibly Lupus. She has a positive ANA, twice tested - both times positive.
    The ITP right now is the most troublesome symptom and not well controlled.
    She did try prednisone and IVIG. Both worked while she was on it but when tapered on the prednisone, her platelet count dropped. Then she tried Rituxan. But she developed a severe reaction to it after the second infusion and cannot have it again.
    So my question is to those who have ITP. What meds are you on to control the ITP. Also, did any of you have a splenectomy and was it successful in controlling the ITP. Her hematologist is recommending a splenectomy now but her rheumy is against it.

    Thanks so much. Hope to hear from someone.

  2. #2
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    Lupus can be a reason for the destruction of platelets. The positive ANA can be from either lupus or the ITP itself (it is an autoimmune disease itself). I've never gotten "bad" sick from it, and I do get monthly IVIG (which is a treatment for the condition) for my CVID, so mine is "controlled" under most circumstances. I've only gone low a few times in the last few years. It can be a "self-correcting" condition, and if it responds to meds (such as the pred), most docs do not want to cut on a person. Since your daugher's responded to the pred, I'd be inclined to go with the rheumy's opinion. That is just my opinion. I'm not a doctor. However, there is absolutely nothing wrong with getting a 2nd opinion from another hematologist and/or rheumy.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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