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Hi Windhorse1,
If you made it through the first night of ATG with no ill effects, you are pretty lucky, as that usually is the worst it! Where are you in your treatment? Are you still in the hospital?
Once you are on a "maintenance dose" of cyclosporine, it is pretty well tolerated by most people. Stay hydrated, as it is hard on the kidneys. You will be tired on the higher doses.
I think the exercise thing is key, as Kmac mentioned. It is good for your physical and mental well being. I think you can have a pretty good Quality of Life once you are off the prednisone, on a maintenance dose of cyclosporine, and are no longer transfusion dependent. You need to be patient though and give it 6-9 months before deciding whether or not your treatment worked. Waiting is the hardest part. Even if you are an early responder, I would be careful tapering the cyclosporine too quickly.
It is good to hear from you again Kmac! I am glad that you are doing so well!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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