[Hopeful]

Steven,

If your dad has to get his blood tested right before he takes his next Cyclosporine dosage, then he is probably getting his Cyclosporine trough tested. I would ignore it, if it is low. If it is high (above 250), that would be another reason to lower his dosage. The trough was what got me into trouble with my Cyclosporine dosage as my doctors were determined to bring it up! My dosage has been as high as 550 mg/day! I've gone up and down on the dosage since ATG. I will never exceed 5 mg/kg/day again, after all the literature that I've since researched on renal toxicity.

Increased urination was a sign for me that my kidneys were having filtration issues. On the lower dosage, it has gone away despite drinking the same amount of fluids. At the time, I also had rationalized that I just must be super-hydrated, but it wasn't the case. While on the higher dosage I also felt EXHAUSTED (more so than the usual anemic tiredness)! It was hard to stay awake past 7 pm. That also has changed. Looking back, my creatinine was elevated over 30% of baseline for 3 months. I was on 350-400 mg for about a month. Because I was nervous about taking so much, I did a bunch of research during that time and had a good excuse to lower my dosage as soon as my GFR dropped.

My doctors don't know whether I have MDS or AA. I don't have chromosonal abormalities. Since ATG can be effective with both AA and hypocellular MDS, it was a safe option to try. I've had a decent partial response in that I haven't had platelets or RBC transfusions in 7 months, although my counts are still low. My doctors don't want to treat me with MDS drugs unless they are sure that I have MDS. I have another BMB next week, which I hope is more telling. If not, it may be time to take this to NIH. Is your dad still on Vidaza? Have you had second opinions? Has he been tested for PNH?