PEP didn't work. 6 mths later now what?
May 15, 2001
In September of 2000 I had receptive anal intercourse. After the act, I learned that the man intentionally mutilated the condom and exposed me to HIV. I started PEP on 9/12/2000, within 48 hours of the exposure. I was first put on Combivir and Sustiva. Due to side effects, after a few days of the PEP therapy, I was changed to Zerit, Epivir and Nelfinavir. After 28 days of PEP, on 10/24/2000 my blood had an undetectable PCR. My doctor told me everything was fine and sent me on my way. On 3/28/2001 I got an HIV test just for the hell of it - and it turned up positive. I was never told that the PCR wasn't conclusive, to continue to get blood tests to monitor viral load changes and I think I might have been able to do something before seroconversion if I had properly advised. Also, I put my lover at risk. He just tested HIV neg but we are waiting for HIS pcr results. Anyway, I am now six months post PEP with normal t-cells and a viral load of 1179. What should I do. I have read a lot on this web site about recent infection - but am I still recent, and what consideration, if any, would having done the PEP have? Also, my resistance testing came back indicating that my virus is not resistant to any of the meds (although there is some detectible mutation) so why did the PEP fail?.
Thanks in advance for your help. This has been such a difficult time in my life and I appreciate your assitance.
Response from Dr. Cohen
Well, sorry to hear that you were not clear about what PEP can do, and the follow up needed.
First - while Post Exposure Prophylaxis or PEP is widely done, it is still not clear how well or how often it works to actually prevent infection. But it is clear that it does not always work to prevent infection. Even if all of the meds are "active" and there is no resistance, infection can still happen - even within the initial few hours after exposure, infection may happen. So, despite taking antivirals soon after an exposure, some do still become HIV infected. And testing just after completing the meds is not enough as you note - follow up testing after stopping the meds is critical to see if the meds "worked". While on them, HIV is suppressed if it is there. And therefore very difficult to measure in any tests we have. But then stopping the meds, and re-checking these tests, is the only way to know if the meds worked to prevent infection or not. There may not have been other tests to do just after completing the PEP - but follow up after is needed for such testing. And maintaining safety after a course of PEP is also key as you point out.
So now what? Well, even if PEP didn't prevent HIV infection, it may have done well by you in helping to protect your immune system during the initial exposure. Your viral load of just over 1000 is very low and your CD4 count as expected in normal- and these are very favorable to you in terms of staying well for many years even without additional treatment. What is not clear now is what to do to best maintain this low viral load. But that is the next step.
It may be that you don't require any more medication for a while to do this - your immune system may be able to cope. But there is no good way to know how long this stalemate will last - just monitoring for now, with a viral load and T cell count every 3-4 months would be the next step. And if there is some trend of a viral load increase over time, then restarting meds, to help your immune system would be the next step. What viral load threshold to use to determine when to restart is also ambiguous - somewhere over 5 to 10 thousand is one number to pick, while others might use lower or higher levels. And then restarting meds would give your immune system a rest while you control HIV with meds. Which may allow the cells to recover - and then allow you to stop again with the expectation that your viral load could again be low, like where you are now.
There is much we are learning about how to manipulate the immune system to help us control HIV even without medication. It sounds like you are in that circumstance - and may be able to maintain for a good long while.
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