Prep or Truvada should be considered carefully before use

[PriestTheyCalledHim]

[Mod note: what follows is an opinion on certain HIV medications. To our knowledge the OP is not a medical professional. Thus the views expressed are personal and should be treated as such by anyone suffering from, or at risk of contracting HIV. We at BL strongly suggest people discuss concerns with medications with an appropriately qualified medical professional. As the OP points out - condoms are always a good idea regardless of other meds or claims of infection status.]

Anyone here on blue light who is HIV- and on prep or the Truvada, or on any other HIV meds marketed towards HIV- people as safer sex or the new safesex more effective than using condoms correctly and consistently except if you are actually monogamous which is super rare now..., needs to know it is TOXIC and very bad for the vital organs, causes bone density loss, and all the idiots taking RAW POZ LOADS or who are RAW TOPS who have the mentality they are invincible or that Truvada is a magic pill that will keep them neg, hah! You all are playing with fire and just google prep/Truvada failure, and bear in mind truvada does nothing to prevent hep C, syphilus, or any other stds or stis. Undetectable does not mean untrasmissive. I have met dudes who were with people who swore they were undetectable, always took meds, etc. and they wound up getting Pozzed from having sex without condoms. HIV infection due to giving oral sex is rare but it can happen, it is not as risky as unsafe anal, vaginal, or sharing needles but it is generally thought to be low risk as long as there are no cuts, sores, or there is no bleeding in the mouth.

I have friends who have been HIV+ or Poz since before there were HIV/AIDS tests and AZT. They all said they are baffled why HIV- people would willingly take super toxic HIV meds with bad short and long term side effects, instead of using condoms and practicing safer sex, and said how basically everyone that is on the Truvada or prep takes it so they can have unsafe sex.

Also people who are HIV+ or living with AIDS still have to use condoms and have safer sex as having unsafe sex even with another person that is HIV+ will cause both people's medications to stop working, or not work effectively. Reinfection of the original HIV strain can happen, as can getting infected with other strains. I know the West Coast SF mentality has been otherwise, but a geneticist friend who lectured at a well known university in the SF bay area said how all of the men in SF who were Poz or living with AIDS are in denial about this.

 

[Fairy of the Flowers]

This is such an informative post and it really did need to be said, I know someone who thinks he's bi, possibly pan but he's not had sex with a bloke yet as he's only had girlfriends, but he likes both, men more recently in the last few months or so, although I've had an inklin for a while lol, he has been messaging blokes and sex is probably going to happen, and it scares me because of what I know goes on with gay men and the chem sex sceane, I don't want him taking meth and GHB and it's rife on the gay sceane in the UK

I had no idea about the dangers of the medications that make HIV not show up but I do know it makes men think they can have sex and it's safe, it's a bloody scary thought as I've known for years there are different strains of HIV and even if both partners have it its still not safe for them to have unprotected sex because of the risk of catching a different strain of HIV and other stds, I didn't know it stops thier medication from working as it should though, and I didn't know prep etc was so toxic, I'll be mentioning this to the person who confided in me, I'm freaking out as I hear condoms tear easy with anal sex too, and he probably won't wear one of he was to get oral, he will for sex as he knows about HIV being more of a risk in gay sex

Something else for me to worry about now, but thanks for the heads up

 

[PriestTheyCalledHim]

This is such an informative post and it really did need to be said, I know someone who thinks he's bi, possibly pan but he's not had sex with a bloke yet as he's only had girlfriends, but he likes both, men more recently in the last few months or so, although I've had an inklin for a while lol, he has been messaging blokes and sex is probably going to happen, and it scares me because of what I know goes on with gay men and the chem sex sceane, I don't want him taking meth and GHB and it's rife on the gay sceane in the UK

I had no idea about the dangers of the medications that make HIV not show up but I do know it makes men think they can have sex and it's safe, it's a bloody scary thought as I've known for years there are different strains of HIV and even if both partners have it its still not safe for them to have unprotected sex because of the risk of catching a different strain of HIV and other stds, I didn't know it stops thier medication from working as it should though, and I didn't know prep etc was so toxic, I'll be mentioning this to the person who confided in me, I'm freaking out as I hear condoms tear easy with anal sex too, and he probably won't wear one of he was to get oral, he will for sex as he knows about HIV being more of a risk in gay sex

Something else for me to worry about now, but thanks for the heads up

Yeah it is highly frustrating, some doctors want every man that is bisexual or gay on Truvada but that does not work for everyone.

 

[Fairy of the Flowers]

some doctors want every man that is bisexual or gay on Truvada

Wtaf so take toxic shit even if they ain't got HIV just to protect themselves, or do you mean men with HIV?

 

[PriestTheyCalledHim]

Wtaf so take toxic shit even if they ain't got HIV just to protect themselves, or do you mean men with HIV?

They want every man that is gay or bisexual who is not HIV+ and who may or may not even be sexually active or into unsafe anal sex or high risk sex acts to take it.

 

[Fairy of the Flowers]

They want every man that is gay or bisexual who is not HIV+ and who may or may not even be sexually active or into unsafe anal sex or high risk sex acts to take it

That's fucked up mate, they can't expect that, it's insane

 

[PriestTheyCalledHim]

That's fucked up mate, they can't expect that, it's insane

Not all doctors are like this, but I know of some in large cities who have this mentality.

 

[novaveritas]

it is hardly surprising.
Truvada is owned by Gilead (those nice people who lobbied and paid of the medical community to bring the useless and harmful liver destroying Remdesevir for treating Covid who also paid academics money to attack alternative treatments)
The same Gilead who ruthlessly profiteered from the stolen technology anti Hep C drug Sovaldi (sofsubuvir), 100k a treatment course anyone? Still too expensive in the USA for people who need it to afford it, the drug is 10x more expensive in the USA than in other countries.
The same Gilead who paid Hepatitis charities money to lobby for wide distribution of sofosbuivir and to change the cost benefit analysis in favor of
The same Gilead who had that famous medical expert Donald Rumsfeld on the board, who sold the rights to tamiflu for swine flu, to Hoffman la Roche and then lobbbied the government to buy large stocks ofTamiflu which rotted in storage, yeah that Gilead. Scum. None of this is secret.

Economically there is a much bigger market for truvada if it is used prophylactically rather than if it is just used post exposure and Gilead are all about the benjamins.

 

[JessFR]

This is such an informative post and it really did need to be said, I know someone who thinks he's bi, possibly pan but he's not had sex with a bloke yet as he's only had girlfriends, but he likes both, men more recently in the last few months or so, although I've had an inklin for a while lol, he has been messaging blokes and sex is probably going to happen, and it scares me because of what I know goes on with gay men and the chem sex sceane, I don't want him taking meth and GHB and it's rife on the gay sceane in the UK

I had no idea about the dangers of the medications that make HIV not show up but I do know it makes men think they can have sex and it's safe, it's a bloody scary thought as I've known for years there are different strains of HIV and even if both partners have it its still not safe for them to have unprotected sex because of the risk of catching a different strain of HIV and other stds, I didn't know it stops thier medication from working as it should though, and I didn't know prep etc was so toxic, I'll be mentioning this to the person who confided in me, I'm freaking out as I hear condoms tear easy with anal sex too, and he probably won't wear one of he was to get oral, he will for sex as he knows about HIV being more of a risk in gay sex

Something else for me to worry about now, but thanks for the heads up

Informative? It literally says nothing other than it's toxic scary bad!

I tend to ignore anyone who uses the word toxic because they generally have no clear definition of what toxic means or what criteria has to be met for something to be toxic. They may as well be saying "it's bad! And it's bad cause it's bad!".

 

[Fairy of the Flowers]

Informative? It literally says nothing other than it's toxic scary bad!

If I read somethings toxic it freaks me out though

 

[SKL]

There's an ongoing lawsuit against the manufacturers of Truvada. Kidney damage and bone density loss. A lot of weird stuff going on with that one. I am not one generally for thinking pharmaceutical companies are inherently the devil or anything but there is some fuckery here. Gilead has been reprimanded more than once by the FDA regarding this drug alone. As it is an HIV/AIDS drug, though, there are added wrinkles of controversy as there is with just about anything that has to do with human sexuality. Given that we went one in the medical community with this illness and it's treatment some seem to be bound to go too far the other. The idea of taking it as prophylaxis, or taking it while HIV+ to be able to be sexually active as if one were not, is ludicrous and would have sounded insane to the original researchers and activists looking for treatment, any treatment for the disease that was killing so many. It sends such an incredibly bad message, too. It also says something about how the drug companies and harm reductionists view the gay community (some of them members of that community themselves) ... and it ain't too flattering.

 

[Joey]

The only thing I want to put out here is you failed to mention that prep is given out to prevent getting hiv if your exposed to it. Otherwise, yes. The downsides of prep are very strong, theres a lot of side effects, and it is given out far too liberally. Coming from experience.

 

[Foreigner]

Gay guy here. I know LOTS of people taking prep because they want to bareback and I think it's a train wreck waiting to happen. I have so many thoughts on this, I will try to be concise.

First of all, the original NYC HIV epidemic didn't just come out of nowhere. If you talk to a lot of the men from the 70's and 80's, it was routine to run into friends at the clinic while being treated for any number of infections like chlamydia, gonorrhea, syphilis, etc. They just kept taking antibiotic after antibiotic after antibiotic, with no regard for how it was destroying their immune systems. Is it any wonder that when HIV came along, it preferentially targeted gay men, whose immune systems were already in the gutter, and spread like wildfire? I've communicated with health professionals who worked in NYC at that time, and they all said that they were super worried for years that the situation was going to brew some kind of super bug. And that's exactly what happened, albeit from a foreign source.

Now we have the same situation happening again with PREP. Men are having rampant bareback sex with strangers, contracting all of the non-lethal STIs, and being treated over and over with antibiotics, while they are secure in the knowledge that, "I'm safe from HIV and everything else is fixable." Meanwhile, prep is super toxic itself and compromising their long-term health. There's also other kinds of viruses transmitted through semen, like cytomegalovirus, EBV, and maybe even unknown viruses that we can't test for.

Also? In the province I live in, in order to get on the free prep program, you have to fill out incredibly invasive questionnaires on a regular basis. They ask you all about your sexual lifestyle, in great detail. Who databases this information? Why are so many gay men self-reporting themselves AS GAY as well as listing in detail all their sexual habits? Do we really want the government databasing all the gay men?

I am extremely worried about this situation. Modern medicine's hubris about prep being invulnerable combined with the laissez-faire attitude around barebacking is making my head spin. And not just me, but also the survivors of the HIV epidemic. It's like everyone has just forgotten the plague years and are happy to go on barebacking like it's the 1970's again.

I think prep and the culture around it is a major disaster waiting to happen and I am so incredibly tired of the positive spin being put on it by the community health professionals, especially the gay ones. They say things like... people on prep know their status, which is much safer than people who don't know their status and aren't taking prep. Or... it's incredibly safe to have sex with an HIV+ person who is on meds, they are practically seronegative. Okay, that's true, but it's also putting A LOT of faith in the pharmaceuticals to always work. According to the science I've read, it shouldn't be possible for HIV to adapt -- but what if it somehow does? Nature is often smarter than us.

Anyway... I could go on and on. I don't like this Truvada thing. It's enables the most toxic part of gay culture to continue doing what it does and I'm not at all convinced we are invulnerable yet.

 

[PriestTheyCalledHim]

The only thing I want to put out here is you failed to mention that prep is given out to prevent getting hiv if your exposed to it. Otherwise, yes. The downsides of prep are very strong, theres a lot of side effects, and it is given out far too liberally. Coming from experience.

Isn't that called PEP for 'post exposure'? I know people who have taken PEP/PREP and they said the side effects are horrible.

 

[Joey]

Isn't that called PEP for 'post exposure'? I know people who have taken PEP/PREP and they said the side effects are horrible.

Prep is for preexposure. Pep is something you can take if youve been exposed to reduce (greatly) the chances of the HIV in your body replicating to the point that you become infected.

 

[PriestTheyCalledHim]

Gay guy here. I know LOTS of people taking prep because they want to bareback and I think it's a train wreck waiting to happen. I have so many thoughts on this, I will try to be concise.

First of all, the original NYC HIV epidemic didn't just come out of nowhere. If you talk to a lot of the men from the 70's and 80's, it was routine to run into friends at the clinic while being treated for any number of infections like chlamydia, gonorrhea, syphilis, etc. They just kept taking antibiotic after antibiotic after antibiotic, with no regard for how it was destroying their immune systems. Is it any wonder that when HIV came along, it preferentially targeted gay men, whose immune systems were already in the gutter, and spread like wildfire? I've communicated with health professionals who worked in NYC at that time, and they all said that they were super worried for years that the situation was going to brew some kind of super bug. And that's exactly what happened, albeit from a foreign source.

Now we have the same situation happening again with PREP. Men are having rampant bareback sex with strangers, contracting all of the non-lethal STIs, and being treated over and over with antibiotics, while they are secure in the knowledge that, "I'm safe from HIV and everything else is fixable." Meanwhile, prep is super toxic itself and compromising their long-term health. There's also other kinds of viruses transmitted through semen, like cytomegalovirus, EBV, and maybe even unknown viruses that we can't test for.

Also? In the province I live in, in order to get on the free prep program, you have to fill out incredibly invasive questionnaires on a regular basis. They ask you all about your sexual lifestyle, in great detail. Who databases this information? Why are so many gay men self-reporting themselves AS GAY as well as listing in detail all their sexual habits? Do we really want the government databasing all the gay men?

I am extremely worried about this situation. Modern medicine's hubris about prep being invulnerable combined with the laissez-faire attitude around barebacking is making my head spin. And not just me, but also the survivors of the HIV epidemic. It's like everyone has just forgotten the plague years and are happy to go on barebacking like it's the 1970's again.

I think prep and the culture around it is a major disaster waiting to happen and I am so incredibly tired of the positive spin being put on it by the community health professionals, especially the gay ones. They say things like... people on prep know their status, which is much safer than people who don't know their status and aren't taking prep. Or... it's incredibly safe to have sex with an HIV+ person who is on meds, they are practically seronegative. Okay, that's true, but it's also putting A LOT of faith in the pharmaceuticals to always work. According to the science I've read, it shouldn't be possible for HIV to adapt -- but what if it somehow does? Nature is often smarter than us.

Anyway... I could go on and on. I don't like this Truvada thing. It's enables the most toxic part of gay culture to continue doing what it does and I'm not at all convinced we are invulnerable yet.

I am bisexual and I agree with you 1,000% it is a disaster waiting to happen.

There are men who are HIV+, who go on apps, and websites and claim they are HIV-, or HIV- and on Truvada. I was told by an older gay friend that in his experience, most men who are HIV+ do not know it, or how many know but lie about it.

I know a gay guy that when he posts a profile on apps and websites says he is on Truvada just so he can get fucked unsafe the way he likes it and has been doing it since the late 1970s. But in truth he is not on Truvada or prep at all. I hope he is not HIV+ he has had unsafe sex with men who were HIV+ and infectious or who had AIDS in the mid or late 1980s, it was not a one time event or single exposure-not that this means anything I have heard of people getting infected from a,single sexual experience-but he has no idea how he was not infected at all. I did not tell him how I saw his profile but I did ask if he is on Truvada as there are lots of TV adverts for it, and we live in an area with a super high population-to the point where a Greek doctor I wrote about in a previous reply wants every man in our area who is bisexual or gay to take prep/Truvada, and if he finds out patients are not on it he insists they take it and writes them a prescription for it.

This is not to b a s h HIV+ men but to state a problem with Truvada/PREP, how it gives people a false sense of security or think it is a magic pill. It may protect against HIV some of the time, but the people at risk like my friend do not take it, and many who are on Truvada, were into unsafe sex long before it was ever available, and some think it protects them against all other diseases. Also, not everyone remembers to take medications daily. Or takes them as prescribed.

The whole 'HIV+ but undetectable means no transmission' is too risky and it is obviously not true as previously HIV- people who have been on Truvada were infected with HIV by people who were HIV+ and on medications.

Who do you know that was around in the 1970s and early 1980s in NYC? A gay friend that was near Los Angeles described it the way you did with people he knew getting diseases, but not taking antibiotics or medication as prescribed and going out and hooking up while still infectious.

 

[JessFR]

The whole 'HIV+ but undetectable means no transmission' is too risky and it is obviously not true as previously HIV- people who have been on Truvada were infected with HIV by people who were HIV+ and on medications.

Can you show an example of someone who had hiv but at undetectable levels infecting someone else?

I did some research on Google but couldn't find anything.

I don't see how you can blame the medicine for people's behavior though.

 

[Foreigner]

Can you show an example of someone who had hiv but at undetectable levels infecting someone else?

I did some research on Google but couldn't find anything.

I don't see how you can blame the medicine for people's behavior though.

The problem is that if you miss a single dose of med, you may start shedding virus. Theoretically.

There is also the problem of long-term deletirious effects on men who take prep. Liver, skeleton, etc.

 

[JessFR]

The problem is that if you miss a single dose of med, you may start shedding virus. Theoretically.

There is also the problem of long-term deletirious effects on men who take prep. Liver, skeleton, etc.

Regarding your former comment, do you have any way I can verify that? Like I'm not saying you're wrong, I just don't know and I'm curious. I'll probably Google some more regardless, unfortunately what I found when I did some searching earlier was pretty vague on these points. Like it's easy to find a lot of fairly convincing information that you can't transmit hiv provided your viral load is low enough. But finding specifics about how fast that changes depending on how you take the meds seems a lot less clear.

I also did some googling on your second point. These long term side effects seem to be relatively rare, I would think they would have to be a lot more common to compete with the harms caused by HIV that the drug helps prevent.

To be clear I'm neither gay nor a man, I don't have any particularly strong stake in this debate. I'm mainly curious. And also I think big pharma gets a bad rap. I've never caught HIV but I did have hep c and was fortunate to have it cured by the medicines developed by big pharmaceutical companies.

 

[cduggles]

Let’s get some references in this thread!

I’m not a gay or bi man , but I feel
comfortable posting on the topic.

Here’s a little blurb on the lawsuit from San Francisco AIDS Foundation:

Truvada Lawsuit Ads are Misleading - San Francisco AIDS Foundation

Truvada is a well-studied medication that is safe for the vast majority of people taking it for PrEP and for HIV treatment.

www.sfaf.org

Here’s a 2019 literature review about PrEP in JAMA:

USPSTF Evidence Report: Preexposure Prophylaxis for Prevention of HIV Infection

This systematic review to support the 2019 US Preventive Services Task Force guideline on preexposure prophylaxis (PrEP) for the prevention of HIV infection summarizes published evidence on the benefits and harms of preexposure antiretroviral therapy in adults without preexisting HIV infection.

jamanetwork.com

A more interesting debate is between the use of Truvada vs Descovy, a newer formulation approved for PrEP recently (late 2019) by the FDA:

Here’s an article for laypeople:

Should All PrEP Users on Truvada Switch to Descovy? These Leading Docs Say, ‘Not So Fast.’

Many fear the push to put more people on the new brand-name drug before Truvada goes generic this year.

www.thebodypro.com

Here’s the free version of an article referenced above about the Truvada vs Descovy debate:

Tenofovir Alafenamide for HIV Preexposure Prophylaxis — What Can We DISCOVER About Its True Value?

This is the prepublication, author-produced version of a manuscript accepted for publication in Annals of Internal Medicine. This version does not include post-acceptance editing and formatting. The American College of Physicians, the publisher of Annals ...

www.ncbi.nlm.nih.gov

Also, more recently, a new injectable (once every 8 weeks) called cabotegravir has shown great promise as a less burdensome regimen for PrEP:

Long-acting injectable form of HIV prevention outperforms daily pill in NIH study

Both methods highly effective at preventing HIV among men who have sex with men and transgender women.

www.nih.gov

There’s a paper about cabotegravir in The Lancet as well, but it’s behind a paywall.

Cabotegravir has granted Breakthrough Therapy designation by the FDA for PrEP.
“ A breakthrough therapy designation is for a drug that treats a serious or life-threatening condition and preliminary clinical evidence indicates that the drug may demonstrate substantial improvement on a clinically significant endpoint(s) over available therapies.”

FAQ: Breakthrough Therapies

Frequently Asked Questions: Breakthrough Therapies

www.fda.gov

Truvada is now less synonymous with PrEP now as Descovy is gaining popularity. Since cabotegravir shows promise as a less burdensome form of PrEP in terms of regimen adherence, the future looks to prove quite interesting.