[marmab]

Hi TASHMAC,

I don't post often, but this topic interests me bacause I have had similar issues since April. I'll try not to be too lengthy, but it is complicated. A couple of weeks after my second ATG (4/12), I was hospitalized with tanking counts, especially PLTs. With every transfusion, I would get a good bump, but 24 hours later the count would be basically zero. This went on for two weeks, and it was not serum sickness. My reds were tanking too, but not as quickly. And then, after a few weeks of this, I began hemolyzing my RBCs. I had lots of tests, as you can imagine, (with, interestingly, both negative and positive Coombs tests). I underwent two rounds of IVIG in May, and finally got back to a transfusion schedule that would allow me to go home, although the IVIG had seemingly no effect. The hemolysis continued, and I had a course of Rituxan in August. The Rituxan didn't seem to help much either. I was also on prednisone all this time, as well as a high-ish (for my body weight) dose of CSA. Still nothing worked against the hemolysis. Then in October, I was scheduled for an MRI because of hip pain, and a BMB to see what was happening in my marrow. At about the same time, my MD and NP took another look at the latest blood smear, and determined that the CSA was part of the problem! They quickly reduced my dose to 100mg/day (from 450). The results of the MRI showed avascular necrosis in my hip, so they weaned me off the prednisone as fast as they safely could. Lo and behold, for the first time since I was diagnosed, my counts began going up on their own, and I haven't had any transfusions since Oct. My PLTs are now at 60, and my hgb is 9.5, and slowly rising, which for me is great. My whites have never been a particular issue, and they are in the low normal range. AND no more hemolysis! So...sorry to be long-winded, but going off, or reducing, my meds is essentially what worked in taming the hemolysis, even though it seems counter-intuitive. Two little things on the down side: I now have the hip issue from the prednisone, which will probably lead to hip replacement. I've been on crutches for 10 weeks, and the hip has gotten worse, not better. Also, my last BMB (10/12) showed still almost empty marrow, with multi-lineage dysplasia and ringed sideroblasts. My ferritin is still high, although we may try Exjade again. I previously had to discontinue it due to kidney problems.

Phew, I'm done. Sorry about that. But I'm wondering if you should talk to your MD about the possibility that the meds you're on are having unintended consequences.

Thanks so much for listening, and hope I've been of some help.

Marmab