[Steven]

Hopeful: Did you have your BMB yet? Good luck! No transfusions in 7 months is a very good sign.

My dad was actually re-diagnosed with MDS today, and we stopped the cyclosporine treatment, and will be restarting with vidaza. The doc's reasoning is that our 4 month treatment with vidaza at the beginning of the year wiped out all abnormal cells at the time, and resulted in an AA diagnosis in March. We haven't had any 2nd opinions yet, but that is probably a good idea. The doc never mentioned PNH as a possibility.

Triumphe64: How was your doctor able to confirm that cyclosporine caused your swelling? Did she give you medication to reduce swelling, or reduce your cyclosporine dosage?

Lisa: I'm glad Ken's weight is so high, 180 sounds healthy considering his diagnosis.

Our doc actually said a 2.8 creatinine is not extremely high. That statement is a bit concerning, but we just stopped our cyclosporine treatment today (although exjade also has an effect on creatinine and kidney function, I think).

We actually did get an ATG treatment a few months ago (a month after we started taking cyclosporine), sorry I wasn't clear on that. When the doc first prescribed the cyclosporine, he said he wanted to have my dad on 10mg for every kg of body weight, and continue for 6 months. It sounds like most or all other patients on this forum receive much less than that.