[Question #5028] HIV - ART/PreP fears and questions

24 months ago

Hello, I am 30 years old, gay, in an exclusive relationship for a year. My BF is 35, has been diagnosed HIV+ 2-3 years ago. He had an uncommonly low viral load when he got tested positive and started right away ART (Tivicay + Descovy). He’s become undetectable 3 months after starting ART and his doctor, which is an expert in HIV in our country, checks over him every 6 months now. We've been well informed about U=U, but as I am hypochondriac and condom isn’t pleasant on the long run, I chose to take PreP (Truvada) on a daily basis. We both always had an excellent adherence to our meds, like over 95% for sure. We are very aware we can't mess up with that.

Now, I am stressed out because of 2 symptoms I got lately : almost 4 weeks ago, I had a rash on my skin, it was like a pink orange peel and was itchy, it last 3-4 hours and vanished after taking a Benadryl. Maybe a food allergy ? A week later, I had a lymph node that got swollen under my ear (it's still there, but a little smaller). I had my 3-months PreP check-up this morning and should get the results by tomorrow. Meanwhile, I had the following questions :


1. Since I am on PreP, what are the differences with time window and accuracy of 4th gen tests ?


2. Should I fear blips and viral rebounds ? I read Tivicay was less likely to let HIV develop some kind of resistance. My boyfriend never forgets to take his pills everyday at the same time, so what are the odds that after 2-3 years he experiences a rebound ?


3. I read a lot about PreP and it's sometimes confusing. I read PreP was reducing by 92% the odds of getting HIV, but only a handful of seroconversion cases have been reported, so why experts can't say it's +99% effective ? Is 92% a really conservative number to prevent any data gap ? And is PreP a good backup plan in case of any blips or viral rebound on my bf's end ?


Thanks !

Edward W. Hook M.D.
Edward W. Hook M.D.
24 months ago
Welcome to our Forum and thanks for your question.  I'll be glad to comment on your questions.  Before I do, let me please complement you and your partner on your approach to your relationship. You are correct that there is now compelling evidence that Undetectable=Untransmittable.  There is also compelling evidence that PrEP is highly effective and that for persons who are compliant with their PrEP their risk for acquisition of HIV is miniscule.  The scientific basis of these two statements is growing steadily.  As our knowledge evolves, there may be new observations or nuances related to these statements but for now, you should consider yourself doubly protected.  Between these two interventions and the high adherence of both you and your partner to your medications, I see no need for condom.  

With this background, let me address your specific questions.   Before I do, let me be clear- our scientific understanding of the U=U paradigm and the effectiveness of PrEP is continuously being studied and while my statements reflect current knowledge of the topic, new discoveries are made regularly.  Thus I use terms like "minimal", "miniscule" and "almost certainly" to acknowledge that new knowledge continues to accumulate. I hope that use of these terms will not be upsetting to you.
 

1. Since I am on PreP, what are the differences with time window and accuracy of 4th gen tests ?

There are no large scientific studies to inform my answer to this because treatment failures are so rare both for persons with HIV who are undetectable and for persons on PrEP.  Because the few well described, documented failures were detected as part of studies, they were detected using PCR type tests.  At the same time, should you become infected (very unlikely as I noted above) infection should also be detectable using currently available 4th generation tests.


2. Should I fear blips and viral rebounds ? I read Tivicay was less likely to let HIV develop some kind of resistance. My boyfriend never forgets to take his pills everyday at the same time, so what are the odds that after 2-3 years he experiences a rebound ?

His chances of treatment failure are miniscule.   


3. I read a lot about PreP and it's sometimes confusing. I read PreP was reducing by 92% the odds of getting HIV, but only a handful of seroconversion cases have been reported, so why experts can't say it's +99% effective ? Is 92% a really conservative number to prevent any data gap ? And is PreP a good backup plan in case of any blips or viral rebound on my bf's end ?

Great question.   In studies of PrEP while efforts are made to monitor medication adherence, it is likely that some study participants, particularly those who failed were less adherent to their medications than they reported.  furthermore, statistical methods for analyses, for complex theoretical reasons are estimates and there may be some conservativism in how results are reported.  The 92% figure is a conservative figure and most experts will tell you that for completely adherent persons, the effectiveness of PrEP is substantially higher than 92%. I think that your dual approach of you taking PrEP and him staying in care with his doctors and being adherent to therapy is a sound one.

I hope these comments are helpful.  If there are further questions or part of what I have said is unclear, we provide up to two follow-up responses to clients. EWH


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24 months ago

Hello Dr. and thanks for taking the time to reassure me with your knowledge on this very complex topic. I indeed received the results this morning and I am still HIV-, which is obviously very relieving. I still don’t know why I’ve been having this lymph node quite inflamed under the ear for 3 weeks now, but I’ll let my family care Doctor take the lead over this to get sure nothing’s wrong with something else.

That being said, I won’t do like much people seems to do here and re-ask the same questions in loop to find some unnecessary comfort. I learnt over time that asking a doctor to ease an exaggerated anxiety issue with diseases is always very temporary. I must focus on a real long-term solution based on changing my own mindset. If you don’t mind, I would only like to use this topic to give you some space (a quick word) on how people can deal with hypochondriac issues, since it seems to be an overwhelming and common problem on this forum, but also in the real life, especially when it comes to STIs.

I am myself trying to stop googling my symptoms, because people often land on incurable or dangerous diseases like cancers or HIV and keep sticking on the very worst of what they read. And they become mentally fragile, which is a kind of a real and unpleasant disease that brings suffering. And this is a huge struggle/challenge for doctors. Cherry-picking symptoms is really insane, but still hard to manage for a lot of people. I am personally in the procedure of finding a therapist that could help me dealing with my anxiety with HIV and other diseases. I have been told to look at a CBT (Cognitive behavioral therapy) by my Doctor, which seems great despite the cost. Meanwhile, if you have any other suggestions or less costly ways to work on that issue, especially for people here that aren’t lucky as me ( I have great insurances, living in Canada with a great job/salary), I think this would be warmly welcomed by the community here.

Finally, I really appreciate you took the time to respond my questions with respect and the fact that you weighted every words is meaningful to me. Good luck for the next and thanks for sharing your experience and knowledge.


* Sorry for my English, I am a French speaker and learnt English over the last few years.

-A

Edward W. Hook M.D.
Edward W. Hook M.D.
24 months ago
Thanks for your follow-up note.  I have several comments in reaction to your comments which may be helpful.

Lymph node swelling is a non-specific process with innumerable potential causes.  If you discovered the lymph node yourself, you should verify it with your PCP.  On the other hand, if a health care provider discovered it and it has persisted for three weeks, I would think that your health care provider would want to follow it up.  So far you have proved that it is not HIV but now you need to have some further evaluation.  

Your anxiety/nervousness is understandable.  Society over reacts to HIV and knowing that your BF has infection understandably makes you nervous.  On the other hand, you and he have done everything right to prevent transmission, as well as to keep him healthy.  As you mention however, Google is the enemy here.  While the internet is a wonderful means for communication, unfortunately the Google sorting process can lead persons astray.  I suspect that may have been what happened when you learned of a swollen lymph node as well.  Please stay off of Google for health related matters- much of what is there, prominently displayed is taken out of context, misinterpreted, out of date, or just plain wrong.    

I hope these further comments are helpful.  EWH
p.s.  Your English is fine.
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