Cidofovir and PML
Aug 3, 2001
I have a brother that was diagnosed in Nov, 1999 with AIDS/PML. At that time his tcells were 10 and his viral load was up over 200,000. He lost the abiltiy to walk, talk and care for himself. Since then his viral load is at 1200 (was undetectable until 6 months ago) and his tcells are up to 274. He has regained some of his coordination and speech back and he is now able to walk a little with a walker and my help. He is on ziagen, viramune and retrovir. His last MRI showed that some of the lesions he had are either gone completely and the others shrank. Even with all these positive results my brother is still unable to care for himself. I am at a loss on what to do to help him. My question to you is, what do you know of the Cidofovir and would it be worth trying to see if it would help? My reason for asking is because I have been in contact with another caregiver of someone with PML and he was telling me how his friend went to the Mayo Clinic in MN and was given the Cidofovir and that in a couple of months time it did wonders for him. When I ask my brother's infectious disease doctor about it, she tells me she does not feel comfortable trying this drug because there were not enough studies done to show that it is worth taking. She claims the side affects can be worse than the actual PML. I would really appreciate your opinion on this since I am at a loss of what our next step should be.
Response from Dr. Pavia
The recent studies on cidofovir are conflicting. One study, published with much fanfare, seemed to show that cidofovir had a significant benefit above and beyond HAART. Other studies, presented in abstract form, do not seem to give as clear a response. One technique that is being used in a research setting is to monitor the amount of JC virus in the spinal fluid with a technique called PCR. That way, if one starts a treatment like cidofovir and does not see a drop in the amount of virus, it is easier to stop it.
PML is a terrible disease. It is possible that the disease has stopped progressing at this point but you are seeing the effect of permanent damage to brain tissue. Perhaps as time goes on, there will be continued healing. It is hard to know.
Cidofovir is a difficult drug to use and can cause kidney dysfunction, and, occasionally, even permanent kidney failure. But is the drug worse than the disease? With PML, that is a hard claim to make.
I don't have a right answer for you. In the case of someone with persistent neurologic loss, I would probably want to measure the JC virus virus load, and I would probably think hard about gambling on the cidofovir, if you are the gambling type. You will not get a consensus of opinion however.
Good luck with this hard situation
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