I'm negative, my partner is HIV+. Will PreP be guaranteed to work?

[Dexter69]

Hi, please excuse the rather simplified title... and my father direct approach!

My partner is HIV+ and I'm -. He isn't too reliable at taking his meds on time unfortunately (truvada and raltegravir). He's pretty stubborn and takes offense when I try to discuss the matter.. He often wants to avoid discussion and just pushes to have sex without condoms.

Neither of us enjoy using condoms, we can't get turned on or cum that way. (Particularly him).

He's a sensitive soul and we both need good sex to be happy... I appreciate the situation isn't ideal but I love him deeply and would prefer to find a way to protect myself before removing the condoms. So I started prep.

We're both versatile, and I basically can't guarantee he will always be undetectable. I know if he were to become detectable, he'd likely not be able to bring himself to tell me about it. It's a harsh truth but a reality.

My question is, what is the chance of being infected whilst taking prep? I read many studies and online data but they all seem to contradict. Some say it's basically 99.99% effective in those who adhere to the regime (discounting those who were positive before starting etc), while I just discovered another study stating the complete opposite... Along with a forum post of someone who seroconverted whilst on prep. Apparently people like him are an "anomaly"?

In light of these contradictions, and "anomalies", I wonder how accurate the info out there is, and how much is not reaching the general public.

I was under the impression I'll basically be protected if on PreP.. but now I'm no longer so sure. Can anyone shed any light? I'll offer the link to one of the studies once I find it.

Link: https://www.poz.com/article/PrEP-drug-resistance-26703-8582

The statistics in the above link are rather alarming considering I'll be having sex with my HIV+ partner potentially twice a day for many years...

[Jim Allen]

I'm negative, my partner is HIV+. Will PrEP be guaranteed to work?

No, is the short answer, its not guaranteed. Never will come with one. 
Also to sum it up the picture you posted is no condoms and no TaSP and only PrEP.

Why do you think your partner would have a detectable VL? Is he having problems being adherent ?

When taken consistently, PrEP has been shown to reduce the risk of HIV infection. PrEP is much less effective if it is not taken consistently and PrEP can be combined with condoms and other prevention methods to provide even greater level protection than when used alone. PrEP is not a guarantee, and I have personally never seen anyone reliable claim it was.   

In light of these contradictions, and "anomalies", I wonder how accurate the info out there is, and how much is not reaching the general public.

You found the information so its reaching Joe public, its published and available not much confusion on that part to be honest. 

Jim

[CaveyUK]

PrEP is pretty reliable but not guaranteed (what is?)

If your relationship is monogamous and your partner doesn't have any resistance to the drugs in your PrEP combo then there is pretty much negligible risk. Even if your partner is not monogamous then it's still incredibly unlikely a scenario would present itself whereby you would get infected. If you are not monogamous then it's still low risk but obviously you may be at risk from someone with a viral strain that isn't susceptible to the PrEP meds, which is very unusual but has happened at least once recently.

With your partner on meds, then this decreases the risk further.

You say that he is not reliable with timing of doses? There is a certain amount of latitude with timing before a significant risk of resistance develops. It's more worrying if he is actually missing doses regularly. Would he tell you if he becomes detectable? Maybe not, but if he develops resistance they would change his medication.

Viral blips are the other issue, but there is some debate about how much of a risk a small blip is, given the PARTNER study that showed zero transmission was based on a VL of < 200, rather than the more stringent levels people classify as UD these days.

Overall, if you are on PrEP then you are practicing safe sex. If your partner is UD then that is a double protection. So I don't think you have anything to be concerned with.

Obviously, as with any condomless sex situation, make sure you get tested periodically also.

[harleymc]

I understand your concerns. You've asked for some feedback but I'm not sure you'll like all of it.

There are no guarantees with PreP just as their are no guarantees with life. But from the same study as you referenced via the P0z review... "As shown previously, high adherence and consistent PrEP use is associated with a relative risk reduction of approximately 90%, and drug level testing indicates that the majority of those who acquire HIV were likely not receiving PrEP during HIV seroconversion"

'isn't too reliable at taking his meds on time'... unless he's missing doses, timing isn't a particularly critical issue. A lot of patients are taking (under Drs orders) raltegravir once per day rather than twice as per the label.

A few hours one way or the other just isn't an issue. He needs to feel in control of his health rather than his pills controlling him.

What are 'discussions' when one person isn't participating? If you're just saying the same thing over and over, then that's not a discussion it's nagging.

[Jim Allen]

Hi

I am moving your topic here, I know your partner has HIV but this is not about your partner its about your own risk and prevention

Jim

[Dexter69]

Thanks so much all for your replies. My question hasn't been answered, perhaps in part due to my poor wording, so I apologise and I'll try to clarify!

I already understand there are no guarantees (with anything in life). I'm looking for find out the statistical chances.

unless he's missing doses, timing isn't a particularly critical issue. He needs to feel in control of his health rather than his pills controlling him.

He is indeed missing doses.

He has a history of problems with honesty and there was a question over whether he truly knew he had HIV before. I eventually persuaded him to be tested with me. When I was made aware of his true status, it took me quite a while to persuade him to start medication, he kept making excuses like "the NHS is low on meds". I then discovered old out of date HIV meds of his hidden away dated before the diagnosis. I later found out he was taking them as one-off pills when he "felt sick", like paracetamol. I tried explaining to him that he needs to adhere to medication to avoid resistance, but he didn't seem to take it onboard. Recently, I'm glad to say he's now on regular meds, however, I notice days he hasn't taken them at all.

He's secretive and doesn't like talking about the issue. He's not a bad person, but he's stubborn & his pride can often unfortunately get in the way of telling the truth.

It was through his risky behaviour and not wishing to think about consequences that lead to this diagnosis in the first place (doing drugs, refusing to believe he could catch HIV from BB sex because he's not a "slut". etc. believing "only sluts get it" etc. ).. he has very simplified beliefs that I've worked hard to discuss & open his mind, & to explain to him plenty of people have HIV without being a "slut", and that honesty is important when it comes to health, but it's a slow process.

So in the meantime, I'm trying to find the stats associated with PreP.

For the past couple of years I've been researching Prep studies. They pretty much all showed 0% infection in those who adhered to Truvada. Then there was a single case of prep failure in the world a while ago, and it was in the news. Now as of autumn 2016 I'd been lead to believe there are around 3 cases of prep failure. Some studies stay 90% protection using PreP, some say 86%, but then when you dig deeper into those figures, you discover that in fact 0% of the participants seroconverted who were negative to start off with and adhered to the Truvada regimen. This would imply a near 99.99% efficacy. However, the study I've just found (link in first post) paints an entirely different picture; something like 7 out of around 1500 on truvada did seroconvert despite adhering. These stats blow everything else out of the water.

(Link in first post)
4747 participants / 3 = approx 1582 on truvada
28% of 25 with truvada levels measured in system = 7 seroconverted who adhered
7/1582 = approx. 0.45% = around 1 in 200.

So according to that study, around 1 in 200 participants adhering to truvada correctly, seroconverted despite adherance.

This is an entirely different picture to the various other studies.
Have I understood the above correctly? 1 in 200.

I would have sex with my partner around 200 times in 3 months.

What I really would like is to know the true statistics so that I may judge and be in charge of my own level of risk.

No, is the short answer, its not guaranteed. Never will come with one.

I know this already.

Why do you think your partner would have a detectable VL? Is he having problems being adherent ?

As mentioned in my first post, yes.

You found the information so its reaching Joe public, its published and available not much confusion on that part to be honest. 

Jim

In fact, in my 2 years of researching Prep and reading studies, I never discovered the link in the first post or the statistic of 1 in 200. It contradicts everything else published that I've read. I've also come across someone who had prep failure by chance, who hasn't been published, because doctors insist he's an "anomaly", as well as other "anomalies" of prep failure on this forum. How many anomalies do you have to have before it's included in statistics? I ask this as I was once an "anomaly" with regard to another type of infection, and nurses & doctors weren't interested in reporting it.. instead of making a note of it, they just simply shrugged their shoulders and said "it's a mystery" and said no more about it. If this is how all officials react, then there could potentially be more anomalies than any individual realises. For example, say if 200 doctors come across 1 anomaly each and fail to report it because it's an "anomaly", that then results in a misrepresentation of data.

So anyway, to summarise... is that 1 in 200 figure correct? If not, what is the statistic on prep failure despite adherance?

[Dexter69]

Hi

I am moving your topic here, I know your partner has HIV but this is not about your partner its about your own risk and prevention

Jim

Perhaps a little of both- we're in this situation partly because he refused to believe me on the risks of BB sex.. now that we're here, I was also anticipating some suggestions on how to help him understand the importance of adhering to his meds. In terms of resistance. I've tried explaining it to him, pointing him to the information, suggesting he talk to his doctor about it since he doesn't believe me. However, he has a short attention span and doesn't like to talk about anything that isn't fun. Whenever I point him to an article to read, he can't be bothered, and when he has to read instructions, he asks me to read it for him and explain in one or two sentences.. then he just changes the topic and starts messing around. Lol! I love him but we are total opposites. I fear just as the fact he didn't listen to me has lead to him contracting HIV, knowing his behaviour as it is, and the fact he keeps skipping doses, the next thing in line will be him developing resistance.

I've had to come to accept my words are perhaps as useless on him.. I care about him but I guess the only person who can do this is him for himself. In the meantime, what more can I do but attempt to protect myself?

[Dexter69]

I appreciate and apologise my posts are long- I'm trying to be as concise as possible!  

So, to summarise, my partner keeps skipping his HIV meds doses, and I'm worried about him developing resistance to his meds (Truvada + Raltegravir). I'm on PreP, and concerned if he develops resistance, it'll weaken mine as well since they're both the same (Truvada).

Tried talking to him about it but he just gets angry. He refuses to use condoms as they don't work for him. Is there anything more I can do to protect myself?

[leatherman]

Is there anything more I can do to protect myself?

sad to say but there is another option you should also consider rather than focusing only on stats about PrEP effectiveness and how that might apply to you individually (a fool's errand anyone can tell you who has tried to apply stats to their financial or physical well being or longevity. LOL) You might have to consider your own well-being and get out of this relationship before his self destructive behavior harms both of you.

His bad-to-non adherence has a high chance of leading to his death (missing doses not only can lead to resistance but to simply not having enough medication in his system to work resulting in an increasing HIV viral load and potential illnesses), along with infecting you with a terminal illness. I would normally be loathe to suggest a change in a relationship of people whom I don't know; but your comments about your partner's poor control of his behaviors, lack of concern about his own health, not to mention the lie of omission by not disclosing his status in the first place, doesn't speak well of him, of how he cares for himself, or how he cares about you or your health.

I certainly hope that you can work out some solution to adequately protect your own health and happiness.

[CaveyUK]

Thanks for the detailed clarifications Dexter. It certainly paints a more extreme picture to the one I think we were seeing before.

As leatherman said, you need to consider all aspects given the level of self-destructive behaviour from your partner and potential consequences. But for the sake of this post I will assume you are head over heels and splitting up isn't an option for you...

Firstly, PrEP or not I would insist on condoms until it is clear your partner is fully adherent and stays UD. I know you both hate them, but if non-adherence has a direct impact on his sex life then it's more likely he will be adherent. I wouldn't normally advocate a 'threat' like this, but there is a practical side. Yes, PrEP would be prevention and it is highly unlikely you would contract HIV, but given what you say and the number of times you are likely to be potentially exposed, I think it is a sensible additional precaution to use condoms.

Secondly, is his doctor aware of the non-adherence? I ask because whilst a great drug, Raltegravir has a higher propensity for resistance to develop in a setting of non-adherence than some other drugs (including other, newer, integrase inhibitors such as Dolutegravir). My understanding is that in situations where adherence cannot be followed, a PI-class drug is often favoured as it can provide more protection if doses are occasionally missed due to the long half-life.

Why not ask to accompany your partner at his next clinic visit to discuss the situation?

At the end of the day it is all personal choice around risk and only you can make that decision. The very worst-case scenario is, assuming you are tested regularly, that you catch any infection pretty early before any damage is done and you get on treatment yourself. Not what you want of course, but given that treatment nowadays is so easy and you'd likely live a completely normal lifespan, it's not bad for a 'worst case' from your perspective.

The key here though is not about PrEP risk or anything else but getting your partner to remain adherent to his meds. If thats not possible then...well, you need to make some tough decisions in my view.

[Dexter69]

for the sake of this post I will assume you are head over heels and splitting up isn't an option for you...

You got it. That's right, unfortunately..

I would insist on condoms until it is clear your partner is fully adherent and stays UD. I know you both hate them, but if non-adherence has a direct impact on his sex life then it's more likely he will be adherent.

If I did this, he'd likely become even more secretive & hide his medication so I have no way of knowing whether he's taken his dose every day.

Yes, PrEP would be prevention and it is highly unlikely you would contract HIV, but given what you say and the number of times you are likely to be potentially exposed, I think it is a sensible additional precaution to use condoms.

Do you (or anyone) know the statistics of Prep failure in serodiscordant couples? I have to recognise also that we have sex significantly more than most couples.

Secondly, is his doctor aware of the non-adherence? I ask because whilst a great drug, Raltegravir has a higher propensity for resistance to develop in a setting of non-adherence than some other drugs (including other, newer, integrase inhibitors such as Dolutegravir). Why not ask to accompany your partner at his next clinic visit to discuss the situation?

That's a great idea, thanks. His doctor is likely not aware. It would be problematic for us to be seen at the same time unfortunately, as we both know the doctor independently and I previously confided relationship details to the doctor before I knew he used the same one. If the doctor met us both, he would put two-and-two together and realise it was him I was talking about. If he let on in front of my partner that I'd spoken about him, even if a comment such as "oh is THIS your partner?" it would spell disaster. I've asked my partner to accompany to a different clinic, but he insists he prefers the same one.

The key here though is not about PrEP risk or anything else but getting your partner to remain adherent to his meds. If thats not possible then...well, you need to make some tough decisions in my view.

I've known this for a long time.. years in fact. I've tried many things, including splitting up. I can't go into details unfortunately as it'd be possible to identify who I am, but I appreciate the advice.

Does anyone know what the failure rate of Prep is among serodiscordant couples who adhere to prep correctly?

[zach]

the trust in your relationship is dead, everything else you're clinging to is an illusion. end it, because it's already over.

no, no one here can quantify the failure rate of PrEP

if you are unwilling to wear condoms, you shoulder the risk of HIV infection if you continue to expose yourself to HIV

you've presented us with a unsolvable problem.

beyond PrEP, your options are clear

• dump him
• wear condoms
• don't have sex with him

these are the things you can do to protect yourself, yet you have rationalized not doing any of these. stop trying to talk your way around the only solutions that exist.

[mecch]

Thanks so much all for your replies. My question hasn't been answered, perhaps in part due to my poor wording, so I apologise and I'll try to clarify!

I already understand there are no guarantees (with anything in life). I'm looking for find out the statistical chances.

He is indeed missing doses.

He has a history of problems with honesty and there was a question over whether he truly knew he had HIV before. I eventually persuaded him to be tested with me. When I was made aware of his true status, it took me quite a while to persuade him to start medication, he kept making excuses like "the NHS is low on meds". I then discovered old out of date HIV meds of his hidden away dated before the diagnosis. I later found out he was taking them as one-off pills when he "felt sick", like paracetamol. I tried explaining to him that he needs to adhere to medication to avoid resistance, but he didn't seem to take it onboard. Recently, I'm glad to say he's now on regular meds, however, I notice days he hasn't taken them at all.

He's secretive and doesn't like talking about the issue. He's not a bad person, but he's stubborn & his pride can often unfortunately get in the way of telling the truth.

It was through his risky behaviour and not wishing to think about consequences that lead to this diagnosis in the first place (doing drugs, refusing to believe he could catch HIV from BB sex because he's not a "slut". etc. believing "only sluts get it" etc. ).. he has very simplified beliefs that I've worked hard to discuss & open his mind, & to explain to him plenty of people have HIV without being a "slut", and that honesty is important when it comes to health, but it's a slow process.

So in the meantime, I'm trying to find the stats associated with PreP.

For the past couple of years I've been researching Prep studies. They pretty much all showed 0% infection in those who adhered to Truvada. Then there was a single case of prep failure in the world a while ago, and it was in the news. Now as of autumn 2016 I'd been lead to believe there are around 3 cases of prep failure. Some studies stay 90% protection using PreP, some say 86%, but then when you dig deeper into those figures, you discover that in fact 0% of the participants seroconverted who were negative to start off with and adhered to the Truvada regimen. This would imply a near 99.99% efficacy. However, the study I've just found (link in first post) paints an entirely different picture; something like 7 out of around 1500 on truvada did seroconvert despite adhering. These stats blow everything else out of the water.

(Link in first post)
4747 participants / 3 = approx 1582 on truvada
28% of 25 with truvada levels measured in system = 7 seroconverted who adhered
7/1582 = approx. 0.45% = around 1 in 200.

So according to that study, around 1 in 200 participants adhering to truvada correctly, seroconverted despite adherance.

This is an entirely different picture to the various other studies.
Have I understood the above correctly? 1 in 200.

I would have sex with my partner around 200 times in 3 months.

What I really would like is to know the true statistics so that I may judge and be in charge of my own level of risk.

I know this already.

As mentioned in my first post, yes.

In fact, in my 2 years of researching Prep and reading studies, I never discovered the link in the first post or the statistic of 1 in 200. It contradicts everything else published that I've read. I've also come across someone who had prep failure by chance, who hasn't been published, because doctors insist he's an "anomaly", as well as other "anomalies" of prep failure on this forum. How many anomalies do you have to have before it's included in statistics? I ask this as I was once an "anomaly" with regard to another type of infection, and nurses & doctors weren't interested in reporting it.. instead of making a note of it, they just simply shrugged their shoulders and said "it's a mystery" and said no more about it. If this is how all officials react, then there could potentially be more anomalies than any individual realises. For example, say if 200 doctors come across 1 anomaly each and fail to report it because it's an "anomaly", that then results in a misrepresentation of data.

So anyway, to summarise... is that 1 in 200 figure correct? If not, what is the statistic on prep failure despite adherance?

Far as I know, there has been NO RECOMMENDATION that PREP replaces condom use.  Everyone doing this is doing it "off label".  Its probably no big deal not a risk for a mixed hiv status couple if both parties are great about taking the pills. 

I want to say an HIV NEGATIVE person on this forum talking smack about an HIV+ person who is not participating int his forum rubs me the wrong way.   Anyway if you have provided an accurate synopsis of your lovers drug adherence, you should immediately throw away this idea that PREP is some kind of option for your couple. 

I managed do stay HIV- in a few relationships with POZ guys and when there was NO TREATMENT - want to know how? - condoms. 

Why don't you just use condoms and put this hang wringing aside, about % of risk factors.  Its silly. You know it is.  Why are you trying to split hairs.   Use a condom and you won't get HIV.

[Jim Allen]

The information is out there and you know its a risk to have bareback sex, I think all your questions have been answered by the other members.

Jim