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Hi Marc & Suz,
Just thought I'd jump in here and add our experience with Zenapax. We also consult with Dr. Maciejewski. Zenapax was SO EASY. Absolutely ZERO side effects. My son Grant (age 15) had 6 infusions of Zenapax without a single problem. That's the good news. The bad news is that it didn't help his counts at all.
He was dx with AA at age 7 in 1998. Horse ATG, cyclosporine, mycophenolate, Rabbit ATG, danazol, Zenapax, prograf... The Horse ATG and cyclosporine worked well for 7 years- no transfusions. Everything else is what we've done in the past 2 years that he has been transfusion dependent.
Now, he has some weird, rare kind of acne (can you believe it!!!) that docs are speculating may have been triggered by the androgenic effects of the many different immunosuppressants. So, since they weren't working anyhow, he is off all immunosuppressants now and has been for about a month. No change in counts. The weird acne symptoms are: fluctuating fevers, joint pain, weight loss and.... anemia!!!!!!!! The poor kid just can't get a break. It's called acne fulminans. Normally hits white males ages 13-16. Of course it does! JEEZE!
Treatment is antibiotics, prednisone and accutane. Right now, he is on doxycycline only. Accutane will start at half dose in a week or two.
Sort of got off track there, but just wanted to give you support toward trying zenapax. It does work for some and just wanted to assure you that it was easily tolerated.
Wendy/mom to Grant
dx 12/4/98
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