Dear BobbyJD,
I am sorry to hear about your sister's declining counts 2 years post-ATG. I believe I can identify with what she is going through. I am about 18 months post-ATG for SAA myself, and have also been experiencing declining counts as per below:
Highest Post-ATG Latest (from mid-June)
============= ================
ANC 1750 650
Hgb 13.8 11.9
PLT 210 108
...I am still on my full dose of cyclosporine though (500 Mg/day). My doctor and I discuss at what point we'd consider another round of ATG (or something else). Nothing definite decided yet though. I am anxious for my next appointment with him, and bloodwork, next Friday.
I was really hoping to get an appointment at NIH for further treatment advice, but after reviewing my records, Dr. Young decided I was not a candidate for an office visit at this point because I've responded to treatment (I certainly am much better than I was pre-ATG, by leaps and bounds, even with these declines). I was told that perhaps I could be seen at NIH if I relapsed (but like you, I am wondering what 'relapse' means - the line seems fuzzy, other than if we need blood, then we have certainly relapsed at that point).
Are you familiar with AAMDS? They are a great support organization, and I'm really looking forward to a webinar they are holding July 20th. You and your sister can register as well at this URL if you'd like:
https://live.blueskybroadcast.com/bs...=6849&CAT=6849
...the topics look to be very relevant to our current situations with AA, and there will be experts to answer our questions remotely. I am hoping this will be kind of a replacement for the NIH appointment I wasn't able to get.
Feel free to email me
kevin_mcnamar@yahoo.com if you have any trouble with that link, or any questions.
In the meantime, I feel pretty good, work, get exercise, just took a nice trip with family. Try to live my life. My appetite is good, and I am off to dinner. Plan to hike up a mountain tomorrow with my son.
....I sure hope these declining counts both your sister and I are experiencing are temporary and will resolve on their own.
Oh one more thing, I see you are in NJ. I live in CO but am from NJ. There is an AAMDS support group there that my parents go to, I could give you the info if you'd like. In that group, I believe there is a person who went to the brink of needing transfusions about 2 years post-ATG with her quitting of cyclosporine. NIH offered her another round of ATG, she decided to wait it out, and her counts climbed back on their own, now 5 years post-ATG they are about normal.