I had lupus for 2 years now and dermatomyositis for 10 years. When my lupus flares up my doctor gives me IVIG over 5 days and it helps. Does anyone else use this for lupus?
Hello comenecim & welcome to the site. I have not heard of ths treatment for lupus, but that doesn't mean doctors don't use it. It can possibly also sotos dermahelp with your polymyositis from what I have read about it. I am giving you a link, & don't let it scare you to dealth. All side effects have to be listed, but that doesn't mean you will have them. The only thing I read that would concern me is the fact that it can cause uticaria, & with the polymyositis dermatomysyotis, you already have that problem. It sounds like your doctor is doing everything he can to help you, & for that you should be greatful. If you are not having side effects, & it is helping, I would continue with his program. I am giving you the professional link to this medication for you to read. Lots of things may not make sense to you, but read the patient warnings for sure. Best wishes to you...
Hi. IVIG is used frequently for dermatomyositis and polymyositis. These are done initially every week and then every two or four weeks depending upon the amount used in the infusion. I have had this done, but unfortunately it did not help.
As it reduces inflammation to,use IVIG, it ought to help the first diseases and I can see why they would us it for lupus as well. I am a little confused, with your question, because if you have those and lupus, the lupus is secondary. I do suggest that you have a long discussion with your rheumy and ask a lot of questions. These rare diseases need us to be very informed so that if we end up in an ER or something we can alert the doctors about our disease. Doctors don't know rare diseases like this and it could save your life.
Feel free to write more, or write me privately with your questions. I do hope you receive relief from this treatment. Remission is the best we can ask for and I hope it is soon for you. Karen
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