Aug 16, 2000
Dear Dr. Feinberg, I was reading your response regarding HIV- people with PML. You said it is usually fatal. I have not been able to find any information on the few that do survive PML. My husband was diagnosed with PML after a brain biopsy. He seemed to be improving, but then another MRI showed progression and movement to the other side of the brain. He is being treated with Interferon. How will we know if he is going to survive. If MRI's continue to show progression does that mean he will not survive. He has had this since December. He does not have any other diseases. Thank You
Response from Dr. Feinberg
PML is pretty unusual in HIV- individuals, so I can't point you to a wealth of information about this. The problem is that there are not any specific treatments for it, which is why it usually progresses and is fatal. Interferon is a non-specific treatment which may work in some cases. Cidofovir is a marketed drug for CMV that has activity in the test tube against the virus that causes PML, but it has yet to be proven that it is effective in treating the disease. If there is no MRI or clinical improvement on the interferon, you might want to pursue a trial of cidofovir. Has your husband been evaluated for other causes of immune deficiency besides HIV? Correcting an immune defect if possible may be the most useful approach. I hope your husband has been evaluated by an infectious diseases expert and an immunologist so that you have the most information available on which to base future decisions. Good luck!
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