Question
Should I start taking medication if I might be a long term nonprogressor?
2 April 2022. Related: All topics, CD4 and viral load, Newly diagnosed, Starting treatment.
Hi there, hope you are doing well?
Since mid-January I was not feeling well at all, had small aches, fever and an infection In my leg which wouldn’t go away after intensive antibiotics 4 different treatments of 4 pills a day for 14 days, so 2 months non-stop on antibiotics).
Two weeks ago I’ve been diagnosed with HIV and last Wednesday I had my first appointment at the academic hospital.
They gave a long introduction about HIV, answered the millions of questions I had and then did a medical exam and a lot (like 12 vials) of blood-tests.
The next day, the doctor called to say that part of the blood-test came back, my CD4 was 840 and I could start taking medication Biktarvy (bictegrafir/emtricitabine/tenofoviralafenamide). I should take this for a month and then go for another check-up to see how the virus and my body responds to the Biktarvy.
But today I received the other blood-test results and it says my viral load is at 121 copies per ml. But the blood-tests where taken before I started medication, so shouldn’t it be in the millions per ml?
What might be important info is that i’m 99% sure when I caught HIV, this was in the first week of January.
It’s the middle of the night here in The Netherlands, so I don’t have anyone to ask or talk to, so it would be great if you could shed some light on my case…
Does this mean i’m a long term non-progressor (is this something to cheer for)?
And if so, how come i’ve been so ill the last two months?
Could it be the 2 months of antibiotics (mid-January till mid-march) that was keeping HIV down?
If my viral-load is this low, can i have unprotected sex with my partner again?
Do I even have to keep taking the Biktarvy?
And final question, is this something I should be happy about? Because the last two weeks have been kind of hard mentally and I finally had the feeling it was becoming fine, i’d started processing and learning to accept, but now this weird result brings all sorts of confusion.
Answer
Hi, how are you doing? I am doing well, thank you.
I am sorry to hear that you have only recently found out about your status – it is good that you have been starting to process and accept this.
It is difficult to say if you are a long term nonprogressor (elite controller) or not. While a very low viral load would be suggestive, only using one result to determine this would not be accurate. This is why in general, suppression is required for 5 years to be coined as such and now is too early to indicate this status.
Viral load at diagnosis is determined by the stage of HIV for which you are in. As an example, someone who is in stage 0 can have a viral load over 1,000,000 whereas someone in stage 1 might find themselves with a viral load less than 10,000 – this stage being suggestive of yours.
What was the infection in your leg? There are a number of factors that could have contributed to you being so unwell. Namely given how resistant this infection was to antibiotics. There is also the potential that there were side effects to these, alongside possible symptoms from seroconversion that were being masked by your initial infection of the leg.
Antibiotics do not have an effect on HIV. Antibiotics are only effective against bacteria. They don’t have an ability to suppress or prevent HIV due to how they work.
Your viral load is suggestive that it is safe to have unprotected sex with your partner. Any viral load below 200 is considered ‘undetectable’ and you cannot pass on HIV via sex. Though in your case this viral load is not considered robust, meaning you have only had one test and you do not know if your viral load will increase. This is why medication is important as it can create a viral load and make U=U safe.
For this reason, it would still be recommended that you start taking medication. You also do not know how HIV will impact your immune system (even though you do currently have an excellent CD4 count). Medication at this point is more of a guarantee that U=U applies and that you are giving your immune system the best protection from HIV. This being said, evidence to support taking treatment for health benefit is limited in those deemed long term non-progressors.
The possibility of being a long term nonprogressor is potentially something to be happy about. However, being on medication can have your immune system be as healthy as a long term nonprogressor with the addition of guarantees that your immune system is being protected and you cannot pass on HIV. While it might be of benefit, there is still potentially more benefit to be on medication regardless of how your body handles HIV.
A further reason to support the use of ART is that CD4 and viral load are only markers of HIV progression and management. They are not a direct measurement of how HIV is impacting the body. While CD4 may be high and viral load low, the impacts of HIV could potentially be going unnoticed. HIV can impact the whole body and there are sites where these markers do not reflect presence. As an example, HIV can be present in the central nervous system but this is not reflected in either of these markers.
If you have any further questions or would like anything clarifying please get in touch,
Josh.
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