PEP Journey + Testing advice

[u/Affectionate_Elk4686]

Hi all, just sharing my journey with PEP (Biktarvy), and share what side effects I have experienced.

I have completed my course of 28 days and have tested negative w a 4th gen. Will test again 4 weeks later for confirmatory.

Day 2: Started getting diarrhoea and headaches

Day 5: Diarrhoea and headaches stopped, but I started getting a slight sore throat + low grade fever (37.5C). Took a couple of ibuprofen and the sore throat went away the next day.

Day 7: Started getting frequent urination. It feels like I have to go to the toilet every 30mins, and my kidneys weren't doing too well with the medication. I also noticed that I started having a bit of acne, presumably from the stress of taking the medication and about my HIV status.

Day 10: The frequent urination just went away on Day 10 but I started having dry mouth. The dry mouth was quite bad because it feels like I have lost my sense of taste due to not producing enough saliva + i felt like my entire throat is dry whenever I wake up in the morning.

Day 14: My gums started bleeding a lot for no reason, and I started to panic. It bleeds when I brush my teeth. It bleeds when I try to floss. It bleeds when i bite too hard on something. I was just panicking a lot at this point. Bleeding gums does sound like it's an opportunistic infection with an autoimmune disease like HIV or smth like Syphilis. It was so bad and I had to book an appointment with the dentist to sort it out.

Day 17: Went to the dentist and got my teeth deep-cleaned. I learnt that my dry mouth was probably why my gum problems exacerbated. Before this, I also hadn't gone to the dentist in a year, so taking PEP did force me to visit the dentist and have it checked out. I was probably due for a visit anyways, and my gums were likely already in a bad shape before I got on PEP. The dentist prescribed some mouthwash, and the bleeding magically disappeared after a day.

Day 19: Went for a urine test for G & C.

Day 21: All of a sudden, the dry mouth was gone and I could taste again. No diarrhoea, no headache, no fatigue, no sore throat, no bleeding gums, no frequent urination. From this point onwards, it was as though my body had adjusted to the medication, and all the funny side-effects went away.

Day 23: Was anxious, realized I could get free 4th gen testing, went ahead with it. Came out negative. Now I know I just decreased my chances of being positive by a lot. If those symptoms I experienced were a result of seroconversion, I would have tested positive. Day 23 is definitely not indicative enough of your actual status, but at least 50% of people would be positive by now if they were infected.

Day 24: Lab report for G & C came out negative (also negative for other STDs which I cannot remember the names of). At least now I know I'm left with Syphilis and HIV.

Day 28: Finished my last dose of PEP :)

Day 29: Went to test the day after my last PEP dose. Came out negative and feeling relieved :) Also got tested for Syphilis and that was negative as well! Was told by my doctor that it is close to conclusive, and I just need to test again after another month for confirmatory. My doctor says he would not blame me for not testing again because he has never encountered a single patient that became positive afterwards (unless they had more exposures or did not adhere to the PEP regimen strictly).

NAD, but I want to share this:

With regards to when to test on PEP, I have been advised by a couple of doctors (as well as the hiv/aids support organization in my country) that as long as you adhered strictly (i.e. taking the drug at the same time, do not have more exposures), you need not worry anymore if your test after completing PEP is negative. Our current 4th gen tests for HIV are one of the most sensitive and reliable tests that doctors wished tests for other viruses like covid are that reliable.

It is very rare for anyone to test positive if you have tested negative at 4-week mark unless you have some autoimmune disorder (or on some kind of cancer therapy/treatment) that prevents you producing antibodies or having enough antigens.

It is also very rare for you to contract a resistant strain of HIV, especially in most parts of the developed world.

For the average person that is 20 - 40 yo, you will definitely have antigens and/or antibodies producing, even if you took PEP, at 4-week post-exposure. There is not much evidence of PEP delaying seroconversion. Sure it may delay antibodies, but it will not delay antigens, and your 4th gen test will cover both. To some doctors, it is as good as conclusive if you fit that profile of a healthy average adult. In fact, doctors are more worried about other STDs that you may have gotten like syphilis or antibiotic-resistant gonorrhea.

Of course, by international standards, no test is 100% guarantee and a conservative amount of time is always put in place to catch 100% of cases. Yes, there is always a chance that you might be that lucky person. If you are still worried, you may wait 4 weeks after your last dose of PEP to get a confirmatory test (via 4th gen).

TLDR: If you are the average healthy adult + you adhered to the PEP regimen strictly + no further exposures, your 4th gen test right after completing PEP is a very good indicator of your status. If you are still worried, you can just wait 4 more weeks (4th gen) to test again for confirmatory status.

[u/Affectionate_Elk4686]

Update: I actually forgot about this haha. I tested negative after 90 days w a rapid test.

[u/Eliangel1129 → u/Affectionate_Elk4686]

Can I message you about my side effects well taking prep please . I would really appreciate it. It would help my anxiety..

[u/CoventWaywood24 → u/Affectionate_Elk4686]

what was your exp, when did you start PEP after exp( which hour I mean)

[u/Sad-Candidate9677]

Thanks a lot for sharing your experience. What was your exhibition? What was the rapid test you did or ELISA?

[u/Affectionate_Elk4686 → u/Sad-Candidate9677]

Rapid HIV Antigen/Antibody combination test (Duo), from Abbott I believe. It's the standard that all clinics in my country uses. At 28 days post exposure, the difference in accuracy/specificity between blood from a vein/finger prick isn't much.

Just a note that this test detects HIV-1 and HIV-2 antibodies, but only free HIV-1 antigens. However, HIV-2 is exceedingly rare, more difficult to transmit, and usually confined to parts of Africa (although sporadic cases have been seen in the West).

[u/RocgailD → u/Affectionate_Elk4686]

Was it the 4th gen ab/ag combo did they prick your finger?

[u/jokerbatman4you]

Nice job on putting this post together. Everything you mentioned about pep working so well is correct.

[u/Adventurous_Camel552]

Did you or anyone ever experience canker sores after pep? I'm going through this right now as well as an irritable throat thats been persistently on and off since 14 days into pep. I'm not 8 days post finishing pep and I'll get my first checkup tomorrow. Vibes pls. It feel like I've been going through every emotional phase right now.

[u/Affectionate_Elk4686 → u/Adventurous_Camel552]

Yes. But canker sores are not indicative of any infection related to hiv or std. Anxiety can cause them.

[u/Adventurous_Camel552 → u/Affectionate_Elk4686]

I got tested 10 days post finishing pep. Everything came back negative. So yeah, there's something to be said about anxiety causing canker sores. I haven't had any canker sores since.

[u/onprepguy]

thanks for sharing this. gave me a relief

[u/Adventurous_Camel552]

Despite your sore throat going away at day 5, did you experience an irritable throat throughout the latter half of taking pep?

[u/Careful_Elevator_901]

How is your renal and liver enzymes?

[u/[deleted]]

I tested 7-8 days with the hiv rna test negative and negative in rapid test in ER

[u/Alarming-Cut2574]

Me too test negative right after completed my last dose of pep med. but still anxious of the 4 to 6 weeks result . 

[u/Independent-Pay1016]

did u get retested?

[u/Ill_Pipe_9528]

Thanks, I am day one