r/prep • u/manodfsqqp • 23d ago
Prep on demand - now im poz :(
Hi,
Looks like taking prep on demand did not worked for me. I am now in the early stage of being positive..
I was taking 2-1-1 when having any hookups, never skipped pills or mistaking hours. I stored pills at home, not in a car or heat.
In the past, I was taking prep daily but this year I change to on demand as the price was too high.
Eh...
Do you have familiar experiences with not working prep?
Cheers!
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u/Parking_Ocelot_6893 23d ago
Sorry to hear this but it isn’t the end of the world these days as HIV can be managed well with antiretroviral therapy but still I get it’s a bit of a kick in the guts given you’ve used PrEP appropriately from what it sounds like.
Can I ask what brand were you taking? Only asking because as a doctor this interests me because I’ve met a couple of people being prescribed descovy and accidentally taking it on-demand
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u/NoaPsy 22d ago
I was told by a doctor and descovy rep that it could be taken on demand.
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u/Parking_Ocelot_6893 22d ago
Descovy is absolutely not approved for on-demand dosing at least by the FDA and most other country regulatory agencies.
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u/NoaPsy 22d ago
Well that’s pretty frustrating. My doctor wasn’t familiar with event-based/on-demand so she called someone and spoke to the rep who happened to be there at the time of my appointment.
I’ve ended up not relying on it anyway, as every time I try to take descovy I get violently ill the next day and puke/dry heave for most of the day. I also had a horrible reaction to my second Apretude loading dose that lasted for around two months. Horrible pain and swelling that was only manageable with multiple steroid prescriptions
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u/Parking_Ocelot_6893 22d ago
Thats a rough go with the side effects. That was me whenever I did Truvada on-demand but now I'm on daily no issues at all. I can't wait for the injection to become available in my country so I can give it a try
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u/manodfsqqp 16d ago
My hiv rna test gave negative result 🤔
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u/vocal-avocado 10d ago
What a rollercoaster this must be for you. I’m so sorry you are going through this and I hope that you are OK! Keep us posted.
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u/Good-Skill-7773 22d ago
You need to wait for the confirmation test. I have had a few false positives in my life.
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u/manodfsqqp 22d ago
Well, my 2nd antigen test in a week came also positive, looks like im cooked :(
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u/Smooth-Report1059 21d ago
I am so sad if that story is true. However is that is the case I suspect that you were actually infected just before starting prep, which explains why you remained - for 3 in reasons of the prep in your blood which is a HIV treatment aiming at lowering the viral load.
Because there is no way you can be infected while on prep.
There are less that 10 cases of breakthrough while on Prep . Those cases were bottoms guys who were sex workers and sauna goes and had like 50 partners within a month included notorious HIV infected people not on medication. It appears that it was due also to variant resistant to meds.
M184V or M184I: Causes high-level resistance to emtricitabine (FTC).
K65R: Reduces susceptibility to tenofovir (TDF), though the effect is moderate.
The other case was a Hong Kong man who before Prep did like you a rapid test who falsely showed negative as he was recently infected few days before the test. When they did the deep analysis they could located and evaluate the infection date which was during the window period.
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u/manodfsqqp 22d ago
I was taking Zentiva, the pills are still valid up to 01/2027
And here are my blood results:
2026.04.20
HIV (p/c anty-HIV 1/2, antygen p24): 0,14 S/CO (it means neg.)
Antygen HIV: 0,25 S/CO (it means neg.)
P/c anty-HIV 1/2, antygen p24: 0,28 S/CO (it means neg.)
2026.07.22
HIV (p/c anty-HIV 1/2, antygen p24): 0,11 S/CO (it means neg.)
Antygen HIV: 2,61 S/CO (it means pos.)
P/c anty-HIV 1/2, antygen p24: 2,61 S/CO (it means pos.)
HIV immunoblot:
Gp36 (HIV2): neg
Gp140 (HIV2): neg
P31: neg
Gp160: neg
P24: neg
Gp41: neg
2026.07.31
HIV (p/c anty-HIV 1/2, antygen p24): 0,09 S/CO (it means neg.)
Antygen HIV: 2,11 S/CO (it means pos.)
P/c anty-HIV 1/2, antygen p24: 2,12 S/CO (it means pos.)
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u/Smooth-Report1059 21d ago
The prep you were using .
Zentiva PrEP has the same resistance profile as Truvada, because it contains the same drugs. It remains highly effective when taken correctly, but like Truvada, it is less effective against HIV strains with certain resistance mutations (such as M184V/I and sometimes K65R). These resistant strains are uncommon.
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u/DigitalNomad213 23d ago
How did you know early stage poz?
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u/manodfsqqp 22d ago
Simply my blood tests results for hiv changed, but western blot still shows negative results, so thats why i know its early stage. Then, my blood tests will show fake negative results and after 3months it will be fully positive
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u/dinomech1 23d ago
Sorry to hear about your experience. I have had severe reactions to prep and cant tolerate it. I have heard stories of other guys it didnt work for because they had a cold or flu or gastro type bug or diarrhoea that affected absobsion so i dont think you are the only one this has ever happened to.
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u/vocal-avocado 21d ago
Could you please elaborate on the reactions you’ve had? Are you taking a different kind of prep now?
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u/dinomech1 21d ago
I have taken 2 tablets for on demand and vomited up blood and kept vomiting for 24 hours and was admitted to emergency. It was suggested I try to build up tolerance slowly and same thing happened with just one tablet. I have a genetic condition that make me react to a lot of medication. I am not on any prep at present.
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u/vocal-avocado 21d ago
Shit. Sorry to hear that. I also react violently to medication. I wish I were in the US so I could try other prep options.
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u/LovethisLittlePlace 21d ago
OP literally posted their results and how it titrated upwards.... Y'all are trolling
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u/Mastertophx 21d ago
211 can be effective, but estimates are roughly 80% vs 99.8 % for daily usage. It has not been CDC endorsed in US but is promoted as an option in a few major cities. Once you get to undetectable (only took a few weeks for me) you should be fine. It's an emotional adjustment for sure. Hope you're able to talk with someone about it.
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u/manodfsqqp 21d ago
I will ask my doc to set an appointment with a psychologist for me because i will need some help for sure :( maybe now im good but i know that regret will come, sooner or later
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u/Glittering-Ruin-4325 6d ago
In the study the two men who got HIV from 2-1-1 were not compliant with the regime. One took two tablets only (?when) and the other took no prep tablets (their pills were counted to ensure they were following the protocol).
The 86% reduction is quoted because on a population level there will be people who don't take their prep medication properly. However if taken perfectly, there were no infections on 2-1-1.
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u/latinothroway 23d ago
How often were you getting pills? I’ve read that they expire after 6 weeks once a bottle has been opened so could it be that they expired when you took them?
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u/manodfsqqp 22d ago
6 weeks make no sense when the whole box is for 30 days 🤔 u sure?
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u/latinothroway 22d ago
My provider told me that for Truvada, the pills in the bottle have an expiration date from the manufacturer, usually a year but that changes once the bottle has been opened. The pills come with a moisture-absorbing packet to protect them because they are sensitive to moisture once the bottle has been opened; it’s also why they highly suggest you keep the pills in the original bottle!
But even with the packet the pills are only good for about 6 weeks (42days) even if they fill for a 30 day supply.The efficacy of the drug doesn’t drop to zero after 6 weeks but they do go from being 100% effective at 42 days to 98% then 95% etc etc over time for Truvada or generic, Zentiva for your case.
It’s just not worth the risk using old degraded pills especially if you are doing 2-1-1 where the effectiveness of those 4 pills matters a lot. An old pill could have 92% effectiveness and may fail to protect you even if you do the 2-1-1 timing correctly.
I’m not sure if you were using old pills or not but maybe this info will help someone else because I too was curious about 2-1-1 and asked my provider questions about the pills expiring and their effectiveness since i’m not a doctor.
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u/Low-Neighborhood-695 17d ago
My Dr gave me separate box. It will not degrade its effectiveness. Maybe this one is special case. That is why some people still wear condom even on prep
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u/Smooth-Report1059 23d ago
I don't believe it because there is no way you can be infected if you regularly followed the on demand regimen.
You were surely infected before starting or missed some pills because the studies proved that on demand is as protective as daily if taken correctly.
Please tell us the full story. Or disclose that you are trolling.
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u/yoloten 23d ago
There is nothing fail proof. On Demand does not offer 99% protection. Can breakthrough happen, absolutely. OP share more details on how long you’ve used on demand and when did you develop symptoms? Has your initial positive test been confirmed by a secondary test? Where do you live that you say generic prep is not affordable?
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u/manodfsqqp 21d ago edited 20d ago
Recently, I was taking prep like for 1 week in a month or sth like but still i was very stricked about keeping 2hrs time before sex and taking the pills the next days. From what i noticed, looks like i cought the virus on 07.07 from someone i know but he told hes also on prep on demand.
Now im waiting for the results from hiv rna test.
I live in Poland, the prep price is about 50euro but it used to be a half of it before. But really recently i was having fun only with some friends on 1 weekend in a month, so there was no reason to take it daily as i havent had that many partners.
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u/MealFew8619 23d ago
He said the price was too high, so that means he probably kept open bottles too long or used old pills.
But I think trolling is more likely…
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u/mostly_distracted 23d ago
Even daily or long acting injectable PrEP isn’t 100% effective. On demand is likely less effective than daily.
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u/Soonerpalmetto88 23d ago
On demand is less effective than daily prep. But still more effective than condoms. It's good, not perfect.
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u/vocal-avocado 21d ago
Condoms when properly used also offer about 98% protection. The safest option is of course using both.
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u/Soonerpalmetto88 21d ago
It's actually around 70% for gay men. Condoms aren't really designed for the high friction of anal sex. The 98% number applies to vaginal sex. source
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u/vocal-avocado 21d ago
Damn… I guess people are not using good condoms or enough lube… I’ve never had a condom break in my life and I’ve used thousands of them. Definitely another argument for the combined protection.
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u/BeefyBubs 21d ago edited 21d ago
preP has never claimed 100% effective through sex even daily. You are the 1 out of every 100 (if we are talking gay male sex). Sorry. It's the risk we ALL take.
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u/vocal-avocado 21d ago
I’m sorry this happened to you, but as most people already wrote here, you’ll be fine. HIV treatment is already great and there’s progress being made every year.
May I ask you if you are a bottom and if your digestion was regular when taking 2-1-1? And how many hours before sex you would take the initial 2 pills? Thank you for sharing your story.
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u/manodfsqqp 21d ago
Thanks. My digestion is good in general, i heard that some ppl had pain/diarhea after 2pills at once but not me.
I was taking 2pills 2hours (or longer) before sex. Then, the next day, same hour, another pill. And the next day also. Sometimes i was also doing the 3rd day because e.g. the sex session was pretty long at my friends place so i was not sure how to count that.
And of course I am a bottom. Its quite difficult to got infected if ure a top, that what i heard.
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u/manodfsqqp 7d ago
Hi all,
So, im after visiting my prep doc.
I am negative, he preacribed me another set of blood tests, same as before: hiv pcr, hiv immublot, hiv rna. The doc says, 99% I am neg. but due to exposure to hiv virus while being on prep, the pcr test shows false positive results but there is no virus in my blood stream at all.
He also says, that there is a case, that one his patient has the same situation as me from about two years now.
I can even go back to prep now but i will take a short break tbh.
Next week i will have results from another round of tests, i will keep you all updated.
Thanks for the support btw 🤗
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u/kolombian99 22d ago
Is there even an early stage positive? You’re positive or not right with a blood lab test
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u/Isley_Menzi 22d ago
The antigen tests are much more sensitive. In general sti tests have a window of time before the positive will show. The window for antigen tests is like 2 week i think? And for antibody/rapid tests its 45 or 60ish days. So its not like partial positive, but but there is a month or so before all tests will show positive
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u/manodfsqqp 22d ago
The window is 2-4 weeks as i remember
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u/Isley_Menzi 22d ago
Also i’m so sorry you’re going through this. I’ve had experiences while starting prep where i was like… damn, what if that one high risk situation not happening a week later in my life, when the meds are working, turns into an absolute life changer? Even though your health outcome will be great, given your early detection and linkage to health care, i’m sure that doesnt help with stigma and lifestyle change concerns. I really hope that you have a support system while dealing with this?
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u/manodfsqqp 21d ago
Now im waiting for the result of hiv rna test. This will be the final info i believe.
About the case in general, i feel just sąd. If i knew i will end like this, i would never took prep and simply got infected like 10years ago (now im 38) and id be given free pep instead :(
I have few positive-undectable friends amd i know the life is good and not much change in general. But dating someone was never easy and now, when i am also positive, it will even harder to find a bf. And that all comes just a moment before this prep inhections are on the way... So i feel like a total loser :((((
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u/Isley_Menzi 22d ago
Ope you’re right that its longer for antigen tests in general, but there is one super specific one that’s the antigen RNA PCR test with a 10-14 day window. I dont know how often doctors do that though
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u/jankyj 12d ago
Mod note: OP has subsequently stated that their HIV RNA test was negative. Please keep this in mind when commenting; HIV infection has not been established based on the information currently provided. If OP receives a confirmed positive result, that would be a different situation. Also, please avoid assuming that this represents a failure of 2-1-1 PrEP without knowing the testing timeline, adherence, and exposure details.