[Question #8366] Daily PrEP but HIV symptoms

45 months ago

Dear dr’s,

Hoping you’re well and thank you for providing an excellent service.

I have a few questions regarding PrEP and any sexual exposures there after.

Some context: I have been taking daily PrEP now for 5 months now. I have never missed a pill and take my pill every day at 9am. There has only been two incidents where I overslept my alarm and took the pill around 10.30am.

I am slightly concerned about a few recent exposures I have had and some recent symptoms I am experiencing.

Exposures since last HIV test:

11 September (52 days ago) = Condomless anal sex (I was bottom), condomless oral sex - other partner on prep.

18 September (45 days ago) = Condomless insertive oral and I rimmed the partner. Said he was on prep - we discussed HIV and he said he’s previously been with positive people but said he had tested negative since.

12 October (21 days ago) = Brief Condomless insertive anal sex (I was the top), no ejaculation. This person also told me he had previously been with HIV positive partners. He told me he took prep on demand, but from what he told me he wasn’t taking the 2-1-1, but more so 1-1-1-1-1. Now, this is the partner that alarms me. When I saw his prep bottle in his room, it had his friends name on and not his. What scares me is that this person isn’t taking his prep as prescribed, has been borrowing his friends prep and has previously been with HIV positive partners. He told me he had tested negative since, but given the strange situations around his prep, I’m not sure whether to believe him?

21 October (12 days ago) = condomless oral sex both ways with a friend who is on prep

Symptoms:

About 5-6 days ago, I noticed a slight rash start to develop on my neck on both sides. This was spotty in nature. Since then, I’ve also noticed these types of marks/spots develop around my right arm pit, on my left shoulder/top of the arm and only on the inside of my right elbow. The spots down by my right arm pit are slightly sore.

I have not experienced fever or swollen glands.

I’m in the UK, and right now there is a garden variety cold going around. I’ve had a bit of nasal congestion, much like everybody else.

Regarding the rash, I thought these could be attributed to sweat given the amount of layers I have been wearing, or perhaps chafing marks, but I’m still anxious.

Questions:

Given that I take daily PrEP at the same time everyday, is there a chance I would have caught HIV from the situations explained above?
Is it possible to experience ARS symptoms whilst taking PrEP?
Does this rash sound ARS related?
Yesterday it was daylight saving time/the clocks went back in the UK, therefore for the past two days I have been taking my PrEP at what was previously 10am - would this affect my PrEP?

I’m scared I’m seroconverting despite my adherence to PrEP so any advice would be greatly appreciated.

H. Hunter Handsfield, MD

45 months ago

Welcome back to the forum. Thanks for your continued confidence in our services. I'll be taking this question, but I scanned your recent discussions with Dr. Hook about your housemate with HIV and your start of PrEP.

My first comment is to congratulate you on a careful and effective approach to sexual safety in regard to HIV. With unprotected anal exposures, you remain at risk of other STIs. But not HIV.

I guess the main thing for you to understand here is that symptoms of ARS (acute retroviral syndrome, i.e. new HIV infection) are very nonspecific. That's medicalese for not pointing to any particular condition. If you list all symptoms that can occur during ARS -- probably a hundred or more -- virtually all occur in many other conditions (mostly minor) and their presence is usually not suspicious for HIV. Therefore, individual symptoms by themselves are an inherently unreliable indicator of ARS. About half of all new infections cause symptoms at all. In those, it is the pattern and timing of symptoms that are important. Indeed it seems you already understand that ARS usually includes sore throat, fever, enlarged lymph nodes in several body areas, and skin rash. The rash generally is not localized in the way you describe, and absence of the other symptoms makes ARS unlikely. Nasal congestion generally doesn't occur with ARS (as you may already know).

Further, PrEP is highly effective: with both your own treatment and selecting partners on PrEP, the chance of catching HIV is extremely low. The details of the regimens you describe don't make any important difference in effectiveness.

Those comments pretty well cover your specific questions, but to be explicit:

1. Your consistent use of PrEP as described essentially eliminates any chance you will catch HIV, regardless of your partners' compliance with recommended regimens.

2. Good point, which I didn't think to mention above: It is very unlikely that a new infection would cause ARS symptoms in someone taking PrEP.

3. No, your rash is not typical of ARS.

4. The reason it is advised that PrEP be taken at the same time every day is not because it makes PrEP any more or less effective. It is simply a strategy to increase compliance, i.e. to help avoid forgetting. Occasionally taking it a few hours early or late makes no difference. For example, it would be equally effective if taken every 12 hours, every 36 hours, or (ideally) every 24 hours.

So I really wouldn't be worried about HIV. But you need to be tested for other STIs, i.e. gonorrhea and chlamydia (with the specific anatomic sites depending on those potentially exposed) and blood tests for syphilis. All these probably every 3-6 months, depending on frequency of sex with various partners. And most experts also recommend HIV testing every 3-6 months as well, regardless of symptoms that may or may not occur. (Yes, the risk is nil. But better safe than sorry.)

I hope these comments are helpful. Let me know if anything isn't clear.

HHH, MD

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45 months ago

Thanks for the swift reply, Doctor!

In regards to your comments about symptoms, as you rightly point out I have a general understanding of ARS symptoms and their nonspecific nature. Nevertheless (and I'm sure you find this with a lot of people you speak with on the forum) that when we experience anxiety around this issue, it's a little more difficult to focus on that rather than looking at what we perceive to be a rash.

Correct me if I'm wrong, but if these marks were an ARS related rash, would I also be experiencing fever, swollen lymph nodes etc. now too? i.e. all the symptoms happen at once and don't come and go at different times?

In regards to my daily use of prep taken at the same time, would you say I'm as close to 100% protection from HIV as I can get?

Definitely taking on board your suggestions for the other STD's! I have my PrEP check up in a months time, where the clinic will do all the necessary STD/HIV tests.

Finally, to summarise, you do not think I am at risk of HIV from any of the situations described in my previous post? Regardless of their previous contact with people who are HIV positive?

As I mentioned in my last post, it was the contact on 12 October that concerned me the most.

H. Hunter Handsfield, MD

45 months ago

Thanks for the additional information.

For the most part, all ARS symptoms start within a few days of each other, and I've never heard of a case in which rash was the only symptom: sore throat, fever and lymphadenopathy are more common symptoms. I see no reason to be especially concerned about 12 October. Obviously I can't judge your partner's truthfulness as well as you can, but it is generally believed partners usually don't lie about HIV status and related information. Equally important, you were taking PrEP, which pretty much makes your partners' PrEP compliance irrelevant. We don't know that PrEP is 100% effective, but it is close, and I see no reason to suppose you are not fully protected, or to doubt your level of protection 12 October. However, for 100% guaranteed protection against HIV -- and to have protection against STIs -- I would suggest you use condoms for anal sex.

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45 months ago

Thanks doctor.

Regarding symptoms, and given that I've had a garden variety cold within the past few weeks, would an ARS fever, lymphadenopathy and sore throat be continuous or come and go? I can't recall a substantial sore throat or fever etc. but I'm curious.

So regardless of my partners previous behaviour, I would have been fully protected by the PrEP? I also suppose being a top in this scenario and circumcised may add to this protection also?

Totally understand your point about condoms for added protection. To conclude, you don't see any reason for me to be concerned about HIV in the scenario(s) I have outlined?

Again, thanks so much for your help. I understand three comments in the maximum so I await your final response to the questions and overall discussion.

H. Hunter Handsfield, MD

45 months ago

Thanks for the thanks, but come on! These are repetitive "yes but" and "could I be the exception" questions all, but I see no need to keep answering questions that have already been discussed or whose answers are obvious with just a little thought! You can be sure I haven't changed my mind!

It is not possible to be 100% free of HIV risk while continuing unprotected anal sex with other men, but within that context, you are as safe as anyone can be and very unlikely to catch it. But I do hope you'll not only get tested frequently for other STIs, but consider using condoms for anal sex.

I do hope the conversation has been helpful. Take care and be safe.

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