[Ruth Cuadra]

Dear mola-tecta,

I'm glad to hear that you have found the threads in this forum useful for understanding the complexities around aplastic anemia, PNH, and treatment with ATG. When I was diagnosed with aplastic anemia in 1996, Internet resources were scarce and it was hard to find information. Now we have numerous resources to help.

As Matthew42 said in his reply, it does sound like your mother is doing well. Her doctor's insistence on repeating ATG at the 6-month mark is curious to me as it is well known that it can take upwards of a year and sometimes longer to gauge a person's response. Hemoglobin and platelets typically take longer to respond but her ANC count indicates that she is responding. It doesn't sound like she is in any immediate danger so you might ask to review her case with an AA specialist at your center for more guidance.

Her medications seem reasonable to me. Cyclosporine, while the cause of annoying side effects, should be considered your friend. When she is ready to be begin tapering off (usually around 12 months post-ATG), the taper must be VERY slow to avoid relapse. Her prednisone dose is not very high and must also be tapered very slowly. I remember the swelling, water retention, weakness, and tremors from these drugs, but in hindsight those troubles were soon forgotten once I recovered. Stopping Aranesp at this point also seems reasonable. Promacta didn't exist when I was treated, so I have no experience there. As with needing to be patient after ATG, you should encourage your mother to be patient until the medications can be removed.

Please post your questions here and we will all try to answer.

Regards,
Ruth Cuadra