Question
Do elite controllers need to be on meds? Please explain my results?
18 August 2024. Related: All topics, CD4 and viral load, Starting treatment.
Hello. Thanks for providing this forum.
I was diagnosed in 2005 and was defined as an elite controller because my viral load stayed undetectable and CD4 stayed over 1000 when not on ART.
I continued with these results for 18 years but I stupidly stopped getting tested through complacency and never being sick.
However, 6 weeks ago I fell very ill. I developed very advanced HIV infection with active PCP and was on oxygen, and also CMV, and I had severe diarrhoea. My CD4 was 43 and VL 304,000.
After 4 weeks at the wonderful Chelsea and Westminster hospital, who have an excellent team, I was then discharged.
After only two weeks on Biktarvy my VL came down to 700 copies, which is incredible.
My bloods were repeated another nine days later but the VL was 1100. I am coming back in a week for this to be checked again.
Is this normal to have an increase from 700 to 1100 after dropping from 304,000. All these tests happened within 3 weeks. So I have only now today been on Biktarvy over 4 weeks.
I cannot find any literature online, apart from blips when it is undetectable or without treatment?
My feelings have now changed from being quite positive and making a good and fast recovery from the acute infections, to being a little anxious that the medication might be starting to fail. This is despite reading Biktarvy has a very high barrier to resistance.
My resistance tests showed some minor mutations that might mean I can’t use the two-monthly injectable ART, but nothing they seemed worried about.
Do you have any views on why over 9 days why it went from 700 to 1100 after coming down from 304,000?
Answer
Hi there
Thanks for all these details which really helps me give you answer based on your situation.
Thanks also for sharing your experience as an elite controller off-treatment.
Although guidelines include an option for elite controllers to monitor if not starting treatment, over time, HIV will still normally progress, just at a slower rate than average. You case shows why the monitoring is essential, even if you still feel fine.
Without realising it, viral load not only rebounded to very high levels but your immune system and CD4 count also became much weaker. You were very lucky that nothing more serious happened.
Your response to treatment has been excellent and your viral load is likely to either be undetectable already, or will be when you next text.
Although you see the 700 result as increasing to 1100 in the following test, a doctor should see both these results as technically being very similar. They are definitely not significantly different.
This is because the number given as a viral load result could actually be anywhere in the range of three times higher to this times lower and still be counted as the same. The more often viral load is tested, the more likely you will pick up this variability.
Modern combinations like Biktarvy are expected to reduce viral load by 3-logs over the first month. Each log drop is a 10-fold drop – or like moving the decimal point to the left.
For example, aa 3 log reduction from 304,000 get you to 304 copies/mL. which is exactly the result you have had.
The biggest drop – from 304,000 to 30,400 probably all happened during the first week of treatment, maybe just in the first few days.
Sorry for a complicated answer but I hope this helps understand your results and also why having more viral load test might sometimes give confusing results – even when everything is going really well.
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