Quote:
Originally Posted by triumphe64
I always needed a little prednisone to make the cyclosporine work. It is a balancing act - an art, not a science. I ended up only needing 2.5 mg every other day of the prednisone.
I have only been able to get off of both of those after about four years once they included Danazol in the mix. Now, I only use the Danazol. I could see improvement very slowly after about nine months. Once my Hg got to 11 they started to reduce the dose of cyclo. Nothing with these conditions seems to work quickly.
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I just joined today after finding your links on the web. My husband was admitted to our local VA hospital July 2013 with hemoglobin of 5.0. They did countless tests and tranfusions. They finally discovered PRCA and a large thymoma (tumor of the thymus gland). It was removed, but the PRCA continued. They had no previous experience with this issue. He has been seen by the oncology dept since then. He started out on Prednizone. It didn't work at all and he needed biweekly transfusions. They phased him off that and started 400mg cyclosporine. Within about a month it started to work, but has been very toxic. It has now been lowered to 200mg/day. He has had endless mouth ulcers, hypertension, and an overall fatigue since then. He had 2 major crashes- one last fall and one last week. We started doing some serious investigating and after combing his med records, found that the crashes have followed on the heels of his flu vaccines. We also discovered that the initial decline in his hemoglobin started in 2009 after he got a flu shot that gave him the MUMPS! it is our therory that this is what caused the PRCA and thymoma. As you know, there is little research out there, and we found nothing on the web that links flu shots to mumps in adults or children. There is, however, plenty of references that mumps can lead to PRCA. We are wondering if there is anyone else out there with a similar situation.