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Correct PML question
Feb 25, 2001

Hello, I sent in a question about PML. Everything I've read says that ten percent spontaniously recover. I asked about this but it came out as ten years instead of ten percent. I'm sure the answer is the same. I am curious about this ten percent. Where are they? If anyone knows of someone who has recovered from PML, please write in. I do understand that your expertise is with HIV + and my husband is HIV-. From reading the questions others on this forum it seems like people have had this for one year and a little more. I'd just like to hear from someone if they know of others who have lived longer. Sorry to keep asking the same question, it's just strange to me that I keep seeing this ten percent survival rate and it doesn't really seem to be true. P.S. If people knew the devastation of PML (and other oportunistic infections) they would probably rethink taking medications for HIV, being tested early and being very careful!! Thanks again

Response from Dr. Feinberg

Thanks for the clarification. There are a few people who survive PML and there have even been cases described of spontaneous remission, where the disease gets better on its own, but frankly, I think these are rare cases and I have not personally seen one, either in HIV+s or HIV-s. The best outcome I have personally seen is that the neurologic deficits remain stable and do not worsen with time. I don't know where the 10% survival figure comes from-- it does not seem accurate to me, and for HIV+s, may be out-of-date given that AIDS patients are doing better with PML if their HIV is well suppressed. (By "doing better" I mean that their neurologic problems don't get worse, but they are still alive.) I hope that makes better sense of my previous answer.

And I agree with you entirely: from my standpoint, it is much better for HIV+ people to take their anti-HIV meds-- even if they have side effects-- than to suffer from the many terrible opportunistic diseases that can afflict people with advanced HIV disease.

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