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Hopeful,
Thank you so much for your response! I have definitely noticed the trends with prednisone and ANC, but they usually balance themselves out.
I have started reaching out a little to the hematology division of the med school/center in hopes someone from the benign hematology or rare blood disease section will have an interest in a second opinion, but so far no response. It has been the holidays though so I'm not surprised. I'm not really sure if this is something I can call the office about or not?
Matthew42,
I am hoping for the best for your mother. A big rise would be really fantastic to see and I hope that lowering the cyclosporine will be good if your mom is also having side effects with it. I am also really glad your mother's hematologist is so forthcoming with information! I feel like I have to squeeze the information drop by drop out of my mom's hematologist.
As far as it goes for my mom, she had a small rise in Hgb without any transfusion again! It's very small of course (8.2 on monday --> 8.6 on Thursday) but it's enough to stave off another transfusion for now, since she was expecting the number to drop below the usual transfusion threshold (8). Hopefully she can make it a full month before needing another bag of blood. (last bag given 11/11)
She also last got platelets on 11/26 and they are still holding in the 50s, so I am still hoping that going longer between needing transfusions is a good thing.
Also, her appointments are usually early in the morning and they run a cyclosporine trough level then, before she takes her morning dose. This time her appointment was much later and they ran a non-trough level cyclosporine and found it was actually much higher than they wanted to see. (700? or so?) so she might see a small reduction in the cyclosporine dosage. She also was able to negotiate another small prednisone drop (20mg --> 15mg) so hopefully both of these things will help a little with some of the side effects.
My mother is about to start the Exjade but interestingly her ferritin has gone down to 2400 (from >3000), probably from all the weekly tubes of blood (at least 12 vials a week + 2 of the blood culture bottles that look like hot sauce bottles) so hopefully the combo will get the iron overload in check.
Take care everyone.
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