Jun 4, 2000
My sister was diagnosed with AIDS/PML in June of 1999. She has lost the ability to speak and use her right hand. She was unable to walk and had some visual changes but after starting on an aggressive cocktail therapy she was able to recover some sight and the ability to walk. At the time of diagnosis the doctors told us she would not survive more than a few months at most because the PML was so advanced. It is now a year later and my sister is doing well healthwise though her mental capacity has not improved much. My question is about survival rate and what we as a family can expect. The doctors she sees don't have a lot of experience with PML and the new antiviral drugs and most of the information I find tells us that survival is 1-4 months at best. Do you have any information on what we can expect in the coming months and years? And where can I find more information about PML and the new antiviral drugs? I understand that she will probably always need full-time care for the rest of her life, but in order to make her life as enjoyable as possible we need to know what to plan for. Thank you.
Response from Dr. Feinberg
Powerful combination therapy for HIV has so changed the landscape that survival after PML can't be readily predicted now. It used to be a matter of months, but I think all bets are off. To be conservative, I'd advise you to imagine that she may live for years -- perhaps many years -- if she continues to take her HIV meds successfully. Don't give up all hope for some additional improvement, either, as it may happen. Good luck!
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