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Thread: New here.... Need advice????

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  1. #1
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    Question New here.... Need advice????

    Hi everyone. My name is Jackilyn and i'm 25, I just got diagnosed with lupus and ITP about 4 or 5 months ago. I've had IvIG treatment already and I've been on prednisone and now my Doc wants to try Nplate injections. I'm not sure if I want to go threw with them because I'm scared of the side effects.I've had a lot if side effects wit the prednisone And I don't want to take prednisone for the rest of my life because it also gave me diabetes and high blood pressure. I just don't know what to do at this point. Can someone please give me some advice? Thank you.

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    I cannot give you direct advice, that'd be inappropriate. I do monthly IVIG infusions, mostly due to CVID. If you're afraid of side-effects, and it's not an emergency, life-sustaining procedure, there is nothing wrong with holding off for a while, asking more questions, or even getting a 2nd opinion. Be sure and ask more of your current physicians opinions, and ask them questions. While you wait for an appointment, be sure and write down questions as you come up with them. My wife will use her smart phone to take notes for me, so that we've got them ready when we get to my appointments (do similar with symptoms, and take pictures). As a side-note, prednisone by itself doesn't give you diabetes, but it sure will aggravate it, if you're not careful, and it will depress your adrenal glands. Likewise with the high blood pressure. Which is why it's doubly important for a person taking those & other drugs to take even better care of themselves, which when you feel yucky, is doubly difficult... but you HAVE to control the lupus as best you can. That might mean having to change drugs and/or techniques. Consult more with your docs.

    btw, welcome to WHL forums.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Hi Jackilyn,
    Has your doctor mentioned Rituxan to you. It works about 50% of the time and puts the ITP into remission for about a year, at which point it can be repeated to induce another remission. PDSA.org is a forum for people with platelet disorders. Quite a few Rituxan stories on there.
    My daughter also has ITP and she tried Rituxan. But she had a RARE reaction to it after the second infusion called Serum Sickness. So she cannot have Rituxan again.
    We are also thinking of nplate. Have you tried it and has is it helping at all.

    Thanks.

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