First off, congratulations on your great response to the ATG!
Ahhh...the cyclosporine taper....questions near and dear to my heart
First I will share what my AA/MDS experts told me on this issue. Then I will share what my own experiences have been.
If they read your thread, my experts would probably say, "Why the rush to taper?" Have your counts plateaued for 3 months? If they are still rising, they would say to delay the taper.
Then my experts would say, "Why are you tapering so quickly?" They recommend tapering only 25 mg every 3 months! The time when this is most critical is when you are dropping below what is considered the minimum therapeutic dosage of cyclosporine, believed to be 2 mg/kg(of body weight)/day. The reason for the slow taper is because if you started relapsing or turned out to be cyclosporine dependent, you would want to know the lowest possible dose that you would need to take to maintain counts. Otherwise, you would have to restart on a high dose. Also, I believe, your marrow needs time to adjust to fighting-the-fight on its own. That bad T-cell clone is still there after ATG - although hopefully much, much smaller in size.
Now my experience...
My local doctor is not an expert in ATG. He wanted me off cyclosporine as quickly as possible. So, it was always a struggle to follow my expert doctor's advice. I started tapering while my platelets were still slllooowwwlllly rising, against my expert doctor's opinion. I tapered 25 mg every 2 months at first (my idea of a compromise to the two opposing doctors' views). Sure enough, once I dropped below 2 mg/kg/day, my platelets stopped rising. They plateaued as I continued my slow taper over the next 9 months. My expert reminded me that I should not have rushed to taper nor should I have rushed the taper. Mind you I had been on cyclosporine for over a year when I started tapering and my tapering was pretty slow by most standards! I've been cyclosporine free for about 4 months now. It's nice being off. Since stopping cyclosporine, my platelets have slowly been trending down. I am still hopeful that they will plateau again, albeit at a lower level. Of course, I am also nervous for my next CBC until this happens!
If I had to do it again, I think I still would have started the taper when I did, but I would have hung out at that minimum therapeutic dose until my platelets had plateaued for 3 months.
Best of luck with your taper decisions. I hope it goes well for you! You had a much quicker response to the ATG than I. So perhaps your marrow is stronger as well! I am interested in hearing your experience with it as well as others.