How long should I do IVIG treatments?
My neurologist is giving IVIG to me for Polymyositis to keep me from taking Prednisone and I responded well for a year and a half. My rheumetologist doesn't think I need the IVIG now, that the Imuran is probably enough and I should get off the IVIG and see what happens. My husband just lost his job and insurance and I am starting expensive COBRA insurance and can continue IVIG till the end of the year without any extra cost except the insurance, but at the first of the year I will have to come up with another 5,000 dollars deductible out of pocket (and I already owe that DR. 7,000). I think this might be a good time to get off it and see, but I'm scared to, I don't want to have to go on Pred. I WON"T. I feel good now, my CPK and aldolase numbers have been good, (maybe they will stay good when I stop IVIG, or maybe they will go up, I don't know). I know the two doctors disagree, I know what the neuro will say, he will want me to stay on it, but I can't afford it either.
My question is, I know some of you have been on IVIG for a long time. Have you heard of other people who have been able to take IVIG for a while and then be able to get off of it without their CPK and aldolase numbers going up, or does everyone usually have to stay on it indefinitely.
I would appreciate any wisdom or info you may have!
Texas -Polymyositis, SLE, scleroderma, thyroiditis, psoriatic arthritis