[LoveRapheal1]

Yes but I am a bit confused. You mentioned that you stopped the cyclosporine and your counts increased as a result. You also mentioned that you have decided to postpone the transplant 3 months.
Is this because your counts have increased and you want to see if they stabilize within the next few months? I would like to hear what has happened as a result of this decision. Another member on the forum mentioned that she threw her cyclosporine pills away and her counts increased. I would not risk that but maybe this can happen or just happen temporarily depending on the individual.

Originally Posted by dfantle

I've been out of touch lately because I just had a donor SCT 10 days ago.

What I reminded myself in December, when I totally stopped the cyclosporine in preparation for my SCT is, as I had been told by my Dr who has extensive AA experience (1), tapering is different for everyone & until one experiences how it affects them unfortunately there is truly no way to predict this.

1 week after stopping the cyclosporine, my transfusion & GCSF requirements started decreasing again as my counts started increasing, rather than decreasing as I feared. For me, it's possible the cyclosporine may have been holding my red cells, white cells & platelets at the low levels, which apparently can happen for some. Although I should mention my system tends to react differently to things than the majority of AA patients & this is why I mention it is different for everyone. Truly we won't know for sure if this improvement would have continued because of my impending scheduled transplant, which I had already delayed 3 months, hoping for improvement.

(1) I only mention my Dr's extensive experience so when I list drug levels, doses, share what she tells me... you'll know this is from a Dr who has treated AA patients for more than 20 years, has been on the AA/MDS advisory board for many years, has presented teleconferences for the AA/MDS foundation...BUT this said, everyone reading this has a history different than mine, Dr's with different patient experience & philosophies... & should NOT rely on my info for any medical decisions.

(To limit the length of this reply, I'll include more detail in a thread soon when I talk about my transplant & why I decided to proceed with the transplant instead of waiting several more months to see the true impact after stopping the cyclosporine)

Best of luck!

Sent via my smartphone, pls excuse typos.