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Two copies of CCR5 gene-OK to stop medicine?

Sep 10, 2017

I was a non-progressor with HIV, and didn't take medicine for the first 12 years or so. My labs were always good (viral load usually undetectable, a few blips that never exceeded 2,061 (usually between 80-300).

A few years ago my doctor said I should start medication anyway (Isentress + Truvada, recently changed to Genvoya). I really dislike taking medicine, and it seems to be dragging me down in various ways, and I'm also concerned about long-term health effects.

I just took a DNA test, and it showed that I have 2 copies of the CCR5 delta 32 gene -- which explains my non-progression.

I'm wondering if it would be reasonable for me to discontinue medication? I did read that HIV can mutate bypass CCR5 channels (but it's less likely when it has a harder time replicating in the first place), so I know I need to continue labs to make sure it stays in check.

Also, I don't have anal sex or take recreational drugs, so I think my chances of contracting another HIV strain that already can bypass CCR5 channels are very low.

I do have a regular doctor (a young NP), but am still trying to get an answer from him, and would like another opinion.

Thanks.

Response from Dr. Holodniy

This is a very difficult question to answer. Assuming the test result is correct, and you truly do have two copies of the mutated gene and not one (more common with HIV infection), there are probably less than 15 cases reported world-wide in the literature of people who are HIV infected with homozygous (having two copies) of CCR5 delta 32. Most of what is published are just from epidemiologic studies; and outcome data, with or without HIV treatment is nonexistent. The virus was characterized in a couple of people and found to be a more virulent strain that does not require CCR5 receptor to gain entry into cells. We also don't know much about CD4 counts and HIV viral loads in these folks. So, not much to go on to provide concrete advice. Given your longevity with infection and generally low or undetectable viral loads (although you don't indicate what your CD4 counts have been doing), it is not unreasonable to go without HIV treatment (provided your CD4 counts are in the normal range), and follow the situation closely.



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