Quote:
Originally Posted by Hopeful
Hi Flyguy (Do you like to fish?) -
I think "how you feel" is a very relative thing, since most people with bone marrow failure always feel tired. For me, I would wait until my HGB was below 7.5, and I felt really shakey. For platelets, my center looks for signs of bleeding. So, I would hold out until under 12. Once you get on the transfusion bandwagon, things can go downhill fast. So try to avoid it as long as you can!
It seems like us "older" people with AA (i.e. those of us older than 40), require longer immune suppressant therapy to achieve a response and sustain it. Possibly because cell division slows down as you age???
I kind of look at IST as analogous to Bush's war on terror: ATG is the "shock and awe" phase, while continued Cyclosporine/Prograf is keeping down the insurgents while the marrow tries to heal itself. If you stop this phase too quickly, the insurgents take over again and you are right back where you started. The question is...when do you remove the troops?
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Hi Hopeful,
Thanks for the ideas and suggestions. First of all, I do like to fish, but am a pilot and fly when I feel "up" to it. You are right about the slippery slope of transfusions. They also make BMT more risky I hear. It's true about AA making you feel tired all the time so it isn't much of a diagnostic marker for me. I guess I'm just sort of confused about the whole treatment process that I've gone thru. First CSA for 9 months, ATG for 12 days because of serum sickness- and then Prograf for 7 months up till a couple of weeks ago. Blood numbers are stable and almost exactly where they were when we started in 08.
I was certainly shocked and awed by ATG (h), but it didn't seem to do the same to the AA. I'm not at all sure the Prograf had any effect other than increasing the fatigue. Since I got off it I have stopped needing 3 hour afternoon naps and can do short bicycle rides. Being a LOT older than 40 (69) might create different concerns for my doctors. I guess I'm basically Watch and Wait since I'm off Prograf and only taking Acyclovir now. Next week I get BMB results back and hope some new ideas arise.
Thanks for your knowledge in this area. I don't want to have to learn everything by having the problems first.
Ron