Quote:
Originally Posted by Katinka
Triumphe64,
What meds are you on and what are their effects? I have never heard of Danazol, for example. Usually, the meds have different names in Germany. I'll get a very high dosage of steroides during 5 days in july. Do you have any side effects of the long terme prednisone? I tried IVIG in april, my RBC stabilized and I felt much better (more lively), my LDH improved, but finally IVIG wasn't able to stop the hemolysis. Maybe repeated administration of IVIG over a longer period would be more effective?!
Have a nice weekend......Katinka
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I don't have parvovirus B19. Mine is autoimmune. I started Danazol about four years ago, and my Hg counts slowly began to improve after about nine months. Danazol is androgen, a male hormone, and it makes red cells as a side effect. Yes, they give it to women, too. I have only taken minimal amounts of prednisone for three or four years now (2.5 mg every other day) I am also down to only 25mg cyclosporine per day. Once my counts reached 11 Hg after I started taking Danazol, they started reducing the amount of that drug. There are long term effects of prednisone. Ask your doctor. This whole thing is a trade off. Having a well trained and experienced doctor is really helpful. They are hard to find because these diseases are so rare. It is hard to compare cases on these boards because of the subtle differences. As mentioned before, your case sounds more like gina66 than mine.