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PML help
Mar 24, 2002

Hello. I know you are primarily interested in AIDS research, but I have a question about PML. My grandmother recieved a lung transplant 2 years ago. one week ago she was diagnosed with PML. She had some problems getting her anti-rejection medicine doses lined out (they tried to reduce doses and she would start to reject)and it wiped out what was left of her immune system. The one thing I can not find was the chance of her getting it. The only sites I can find info about this is AIDS sites. Is this unheard of, and do you possibly have any numbers? Second of all can you give me any kind of reasonable time frame for this, considering the medication she takes works to keep her immune system down vs. an AIDS patient who takes medication to boost their immune system? Thank You very much.

Response from Dr. Feinberg

PML is an opportunistic infection, one that takes advantage of a weakened immune system This can happen because of the damage HIV does to the immune system, or because you are taking drugs to weaken the immune system so it won't cause rejection of a transplanted organ.

In your grandmother's situation, the most important thing to do is to alter the medicines she takes to prevent rejection so her immune system is strong enough to fight off the JC virus which causes PML. Unfortunately, there is no drug proven successful for treating PML We have studied the drug cidofovir in AIDS patients, and it may be worth talking to her doctors to see if this is worth trying. It's not easy to take and can cause significant side effects. If her anti-rejection medicines can't be changed enough, cidofovir may be worth a try. Good luck!

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