Quote:
Originally Posted by susansr
Dear Flyguy: thanks for your response. wondering if you are transfusion-free since your numbers are where you mentioned; if so, that's a great thing in of itself. What does your doc say about maintaining this while not on Prograf any longer? What kind of side effects hit you if you don't mind me asking? I get terrible tremors and since it caused me to be magnesium deficient, I get cramping. I also am considering contacting Dr. Young at NIH. Probably a good suggestion for you too. Let me know!
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Hi SusanR,
Thanks for the suggestions. I was transfusion dependent for a couple of months following ATG in November but never got a good "bump" in numbers so they were stopped with HG about 8.8 and platelets in the 30's. They have stayed there since with a small swing to 38, and down to 32 last week. I'm sure thankful that I'm not transfusion dependent but feel a little like I'm doing acrobatics without a net since I'm off Prograf-- I went to Prograf because Cyclosporin caused tremors, sleep problems, diarrhea and fatigue. The Prograf seemed a lot better when I started it in November during the ATG, but has become difficult to tolerate at even a 1 mg twice a day level. I'm so glad you mentioned the magnesium deficiency as cramps are an ongoing problem and the doc hasn't mentioned additional magnesium. Sleep, mild tremors, loss of taste, and fatigue were the biggest problems with Prograf. I've been off it for only 3 days and have more energy, haven't needed daytime naps, and sleep seems to be improving. Since I never got up to a therapeutic level, he didn't seem reluctant to take me off of it and I'm very happy. My quality of life, though diminished, is better now without the Prograf and I don't think the odds would be in favor of my seeking aggressive treatment, yet. I haven't had any tests since going off Prograf last week. I get a BMB on Friday, but don't think they will do another CBC that soon. I will see doc in 3 weeks to review the BMB results and am sure they will be taken then. My usual schedule has been to get CBC drawn every 3 weeks so I should get some baseline numbers to look at.
If you follow up with Dr. Young at NIH, I'd sure be interested in what study they recommend. I live in Atlanta and moving to MD for the duration of the study would be difficult, but I'll have to do something if numbers start down. I'll just keep my chin up and hope for stability for now. I'm so glad to have local doctors whose egos allow them to say they have run out of ideas for now rather than putting me thru another ATG. I'll let you know what future numbers indicate.
Thanks and good luck,
Flyguy AKA Ron