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ARS symptoms after PEP?

Hi, I am a transwoman who had gender reassignment surgery using the penile inversion method, meaning the surgeon who created my neovagina used penile material. I assume that many community members here are not doctors and/or medical professionals. But I still could use your feedback, support, and knowledge about HIV and PEP. I think it is important for me briefly mentioned my surgical history within the context of my potential HIV risk. I also assume that traditional HIV risk statistics are somewhat out the door in my case because of my gender reassignment history.

On March 3rd, I had vaginal and anal sex for the first time in my life. I had this sex with a guy of unbeknownst HIV status to me. We had used a condom, which I had put on him, but it got in stuck in my neovagina. I don’t know if he ejaculated into me or the condom prior to it getting stuck in me. I took the condom out of me and then we switched to anal sex with a new condom. Fearful of my HIV risk, I tried to go on PEP later that day, but the nearest urgent care center would not proscribe me PEP because I didn't have an occupational risk. The next day, I visited the local LGBTQ community health clinic near me and went on PEP within 24 hours of my potential HIV exposure. I completed the 28-day trial of Truvada and Tivicay on or around April 1st. I was fairly consistent with taking it. Except for occasional headaches, I didn't notice any potential ARS symptoms. Given the COVID-19 situation and being Type I Diabetic, I was unable to go for follow-up appointments at the community clinic. They are no longer seeing patients in person because of the pandemic.

Around May 5, I started feeling lethargic. About seven days later, my throat started to feel slightly sore. I also had slightly swollen lymph nodes and enlarged tonsils. But I had no discernible fever. I am surprised that I developed the sore throat as I have been in quarantine with limited exposure to people, except for my immediate family, because of the COVID-19 pandemic. No one in my family has had a sore throat.

On May 19th, I went to my doctor given that I still had the sore throat and tonsillitis. She conducted strep and mono tests, the results of both of which came back negative. She also ordered a COVID19 test, which also came back negative. During the ensuing weeks since my dr’s appointment, I developed diarrhea attacks and a few aphthous sores on my lips. The aphthous sores are an unusual development for me.

Currently, I still have a sore throat, recurrent aphthous sores on my lips, and tonsillitis. I am very worried and concerned that these and the other symptoms that I experienced might be late onset symptoms of acute HIV delayed because of the PEP.

I have the following questions: Can a person have an onset of ARS symptoms at 8+ weeks since HIV exposure? Can PEP/PREP delay the onset of ARS symptoms/seroconversion? Is Tonsillar Hypertrophy and/or tonsillitis a common ARS symptoms?

Prior to this HIV scare and PEP, I do have a history of consistently elevated liver enzymes. Plus, I am diabetic. My liver enzymes were also high on the tests the community clinic ordered on March 4th. Can being diabetic and having elevated liver enzymes impact the efficacy of PEP/PREP?
4 Responses
Avatar universal
Was the end of the stuck condom hanging out of you? If so he did not penetrate unprotected because it seems that the only way the condom fell off the ring was when he went soft. Only the head needs protection in order to be safe.
hiv docs cant diagnose from symptoms so we don't pay attention to them either and neither should you. Only a test proves hiv, and googling symptoms will only make a person anxious since there is nothing useful for hiv diagnostic purposes.
4 Comments
Thank you for your reply. The end of the condom was hanging out of me. The tip was still inside me.
It seems that his penis was always protected since the open end where the penis exited was not in you.
Your situation involves personal contact with an object in air  (fingers, maybe his penis etc. which is not a risk for hiv.) No worries, because you can't get hiv from personal contact except unprotected penetrating vaginal or anal, neither of which you did and you didn't share hollow needles to inject with which is the only other way to acquire hiv. Analysis of large numbers of infected people over the 40 years of hiv history has proven that people don't get hiv in the way you are worried is a risk.
HIV is a fragile virus in air or saliva and is effectively instantly dead in either air or saliva so the worst that could happen is dead virus rubbed or touched you, and obviously anything which is dead cannot live again so you are good. Blood and cuts would not be relevant in your situation since the hiv has become effectively dead, so you don't have to worry about them to be sure that you are safe.
You should not have gone on PEP, since there was no risk. I would move on from hiv, go back to normal life and consider this a non-event.
Hi, Thank you for the additional helpful feedback. That's an important point  you make that I was still protected by the tip of the condom being inside me. My recollection of the event is getting hazy as time progresses. But I am fairly certain that the end/the ring part of the condom was at the vagina entrance, but outside my vagina. I also distinctly recall seeing/feeling that the guy was penetrating me with his penis before he told that the comma came off.
Oops - I meant to write condom lol. I'm slightly dyslexic too.
Avatar universal
Only you can figure what happened, but if he was penetrating with the condom off then you had a risk. You can take a duo test now or any other test 12 weeks after you stopped taking the pep for a conclusive result.
3 Comments
btw, late seroconversion is a very old myth, long ago disproven.
Hi, Yes, I am aware the HIV tests have gotten a lot better since the 90s with detecting HIV. However, I am also aware of this case of an Australian health care worker, who went on PEP because of a big occupational risk to HIV and developed an onset of ARS symptoms 11 weeks post exposure/6 weeks after stopping PEP: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805247/. Yes, my situation is very different than her's and she had greater risk to HIV. But I do see what happened to the woman as an example of possible delayed seroconversion on account of PEP.
Late seroconversion is a very old myth, long ago disproven. We rely on the opinion of expert doctors so no one here pays attention to what posters claim are their personal scientific findings or what they locate on other sites or old articles. You can test now or else you will continue suffering in agony worrying about what-if scenarios for no reason.
20620809 tn?1504362969
I agree that this does not sound to be a risk for HIV.  PEP may have been overkill.  From the way you write, I have to ask if you suffer anxiety.  You insisted on getting PEP even though you were told you really didn't qualify.  A condom hanging out is different than a condom breaking and means as anxiousnomore states, that the penis was covered when inside of you.  A single encounter condom break, by the way, is very low risk to begin with at less than 2 percent.  Then you took PEP which is a very hard drug to take.  But you did it.  And a full course of therapy.  And yet you still worry if you have HIV even after this course of treatment.  By the way, pep has a plethora of side effects associated with it.  

From this event, you sound to have had zero risk.  

However, your anxiety lives on.  I suggest you work on the anxiety.

And with regards to HIV, you can take Prep for prophylactic care preventing hiv.  
4 Comments
Hi, Thank you for your reply. Yes, I do suffer from anxiety, even before what happened to me. To clarify my earlier comments, the Urgent Care facility didn’t even medically evaluate me. They told me over the phone that they don’t offer PEP to people who had  a non-occupational risk to HIV. But the PEP specialist and medical provider at my local LGBTQ community health clinic recommended that I go on PEP based on what happened to me, even though I had a small risk to HIV. But a risk to me is still a risk. I know you weren’t present with me when the medical team evaluated me. I did not bring up PEP to the team, nor did I insist to them that I go on PEP. I’m not here to debate my choice on going PEP.
I don't usually recommend people take a test unless they had a risk, but since you suffer from anxiety, are unsure exactly what happened and the specialist put you on PEP claiming you had a risk, then the simplest solution will be to take a duo test now. Testing negative will end any more what-if scenarios.

Not sure what you meant by this now that I read it again since you mentioned at the beginning that you had penetrating vaginal. "I also distinctly recall seeing/feeling that the guy was penetrating me with his penis before he told that the condom came off." In any event, testing negative should end your worries.
It is early in the morning and I wish I hadn't posted that last paragraph since your referenced quote is crystal clear that you had a risk. In any event, just take the duo and that will end the speculation. Good luck.
Again, your risk was either none at all or extremely low at 2% under worst case scenario.  You clearly suffer anxiety.  Go ahead and test and then you have to move on and treat your anxiety so you don't keep going around in a circle like this.  
188761 tn?1584567620
COMMUNITY LEADER
I don't think you need a doctor's opinion to tell that it's logical to assume, your partner lost the condom during withdrawal. You must have been safe through out the event.

Condom slippage during intercourse, mostly happens due to the penis starting to get flaccid. In such scenario, male partner becomes incapable of further penetration. The other way of losing a condom is during withdrawal after ejaculation since the penis starts to become flaccid. Eventually, no longer being able to stay fit inside the room of the condom. Now, unless your partner was using a condom that didn't fit him right (Oversized / didn't fit in regular size) there is no doubt that slippage happened during withdrawal.

PEP wasn't necessary. You can take a test at 28 days from the last dosage of your PEP, I personally don't think it is necessary. However, it's going to be for your peace of mind. I foresee a negative ahead. Good luck.
2 Comments
Thank you for the feedback. About two weeks ago, I had scheduled a telemedicine appointment with the LGBTQ community health nurse practitioner, who had proscribed me the PEP, to update her about my lingering sore throat and tonsillitis. I spoke with her today. As I anticipated before the call, she was insistent that I get tested. But I am not mentally prepared for a test either before or after one. My regular doctor is not insistent that I get tested. If and when I decide to get tested, I will have it done at my regular doctor's office.
Until you take a test you have no way to know if you are negative, so will likely continue to live in the fear of the unknown that you describe now. There is zero reason to procrastinate taking a test, since if you are positive you need to be on medication.
As I mentioned before, no one can diagnose from symptoms which is why no one here pays attention to them, so there is no reason to keep posting about them. You are trying to self diagnose but the only result will be to be more anxiety because you cannot prove anything no matter how long you study your body. It is your choice whether or not to stop torturing your mind for no reason.
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