Truvada for HIV prevention

[Homohirsutus]

Im new and Im reading stories here about guys who really want to BB but dont really want to get HIV. You should talk to a doctor about going on Truvada. Truvada is one of the standard HIV meds, but last fall the FDA gave approval for this drug to be prescribed as a prophylactic medication for people to take who are at high risk of seroconverting because of repeated exposure. Basically you need to go to your primary doctor, or call your clinic and make an appointment with the infectious disease (ID) specialist. They are also usually certified HIV specialists. Tell them flat out that you like bareback sex and you have sex with HIV positive men and want to put on Truvada to help prevent you from getting infected. Its expensive so you cant do this with out insurance. Its not 100% effective, but it will cause between 42-75% effectiveness in blocking you from getting infected. So I reccomend this guys. Feel free to ask me questions or just google it for more info.

[bearbandit]

Anyone taking truvada for PrEP should also be aware that tenofovir (one of the component drugs) is capable of causing massive kidney damage and the three month check-ups recommended are not frequent enough. I had the worst that tenofovir can throw at you a year ago and I still haven't recovered. Looks like I'll be on vitamin and calcium supplements for life. That's the bad news.

The good news is that tenofovir is being re-formulated so that it stays more in the places where HIV is known to hide out, rather than freely roam the system as the current formulation does. This new formulation of truvada will use the reformulated version of tenofovir (which, because of its efficacy against HIV, has become something of a cash cow).

If you're going for PrEP, do not miss a dose ever and have your doctor keep a close eye on your kidney function. With the current (fumarate) formulation we're seeing moderate to severe kidney damage after three or four years of use. The inability to absorb vitamins and minerals is one thing, how do fancy thinning/softening bones? For fucks' sake be careful with this drug.

My HIV doctors see truvada as PrEP as being proof of a concept (I was in hospital recovering from the effects of tenofovir poisoning when the news came through): we can use a drug to prevent HIV infection. Truvada most probably isn't the right drug, but, as you say it does work.

Personally I'm more interested in the concept of TasP (treatment as protection). An undetectable viral load is as good as a condom for HIV prevention purposes, though obviously you miss out on some of the other anti-STI help a condom can give. Basically TasP throws us back in time to the seventies when we went to the clinic every three months for a checkup whether we needed it or not. Back then it was just part of life, something you did.

Negative guys taking truvada... It's pioneering stuff. Hope it goes well for you.

[PhoenixGeoff]

There's an article specific to the kidney effects here. Note that the elevated risk persisted even after the drug was discontinued.

I'm really of two minds when it comes to PrEP. You're taking some heavy duty, expensive drugs that have potentially life-threatening side effects. I'd hate for someone here who's still negative to end up with permanent liver or kidney damage just because they thought they could take these drugs and get away with barebacking without consequences. Like Heinlein wrote, TANSTAAFL.

I've been feeling kinda down lately...feeling my age a bit, plus some other shit, so take this with a grain of salt:

If you're so scared of HIV that you're willing to expose yourself to drugs like these, then perhaps barebacking isn't right for you.

I can't possibly imagine that any insurance program, private or government, would be willing to fork over the massive expense of PrEP (not to mention the risks) when there are plenty of other perfectly legitimate and much more inexpensive and safer means of dealing with HIV prevention (and that's the old familiar "ABC" method they routinely push in sex-ed). We're talking approximately $7000 per year when you can buy 150 condoms at Walgreen's for $35. What do you think they're going to tell you?

And actually, given that there are other effective options out that, I think that might just be the right call.

So yeah, I think PrEP is a dead end. Unless the price of HAART drops radically, which ain't on the horizon.

[Guest GoodExercise]

Keep the drug companies in clover.

[Guest JizzDumpWI]

I really appreciate this thread! My own local clinic gave me the PreP talk earlier this month. So it has been on my mind, but I have been thinking pretty much exactly what you guys have written. Lots of money, and given that side effects are pretty common, seemed too good to be true.

Added to this that I've only ever been doing BB sex, lived throughout the before, during the AIDS crisis of the 80's still only having BB sex; and am here some decades later still HIV neg (yes, there have been STI's along the way)... But really, don't you think if it were going to have happened, by now it would have? It's not like I've lived life in fear of it. Certainly doesn't inhibit my sex now.

But my well intentioned friends at my favorite STD clinic push that anyway... And these are good people, trying to do their best every day for people they interact with for maybe 30 minutes once every 3 months (or less for some guys who test every 6 months; or annually; or only when there is something "odd".... So for the parade of patients and their intention to nudge people towards the healthiest life; they suggest PreP.

My STD Clinic (STD Specialties in Milwaukee, WI USA) has a sponsoring ID doc - and of course that's who they suggest I go see. Now as much as I like and respect my friends at my clinic; the thing rolling in my sole remaining brain cell (the one that survived) are the side effects; and what this doc will try to entice me to take along with other things I take for BHP, Blood Pressure, Allergies. My experiences in recent years with sides effects, while not as severe as BEARBANDIT; give me reason to doubt. I have about 50% hearing in one ear as a result of medications.

So, I think the ID doc will be trying to convince me to take a new drug; will I'm sure blithely declare how there are hardly ever side effects on THIS one; and that I will be hugely better off with it. It is unlikely upon meeting me to realize that I have lived with me all my life, and he just met me. And so will I suspect discount the facts (35 years of BB only sex dating back to PRE AIDS days to now; and still neg -- and try to convince me how this new drug is somehow necessary.

GoodExercise makes a valid point. Keep the drug companies in clover. We are a greedy society (the larger one, not EACH individual). Hell, look at another thread on THIS website and you'll find pay to poz discussion. So the profit motive is everywhere.

Bottom line, whether it is PreP; or any other drug; know yourself, know your history, understand as best you can the what if scenarios as they pertain to you (each of us individually). We need to get away from the mindset that one's doctor knows everything, and we as patients know nothing. (ditto if the person hired is a lawyer, plumber, electrician, etc).

[bearbandit]

Thank you MascMountainMan, JizzDumpWI and GoodExercise - you both underline my point about TasP in different ways: the drug companies are about selling drugs almost regardless of consequence. For me to get my potential partners on PrEP would get the tills ringing and also put their health at risk (again I admit my tenofovir reaction has been extreme, but there are lots of other side effects possible: it's not known as the farty drug for nothing). PrEP proved that it was possible; we now need to find the right drugs to use and truvada ain't it.

You want, for some insane reason to keep a ram in a field of sheep; which is cheaper: multiple hysterectomies or a single castration? That's why TasP makes sense (though the analogy I just made has me crossing my legs): keep my VL undetectable and I can't pass it on. The challenge is that it's reckoned that 25% of people in the UK with HIV don't know they have it: some because they've never tested and some because they've only just caught it. The more of this missing 25% we can test and get started on treatment if it's indicated the better for all of us. Trouble is that it takes a lot of persuasion to get people to take an HIV test and you get idiots running around saying "of course I'm negative: I had a test five years ago".

A quick note to JizzDumpWI: my experience with side effects is acknowledged by the medical establishment here as being extreme. It comes partly from being diagnosed so early time-wise and starting treatment within a couple of years: there was no conception of what the correct dosage might be so everything was diagnosed in massive overdose. This now rarely happens, if at all. My concern is that truvada is the drug that's being handed out for PrEP when we know that there is a severe problem with one of its component drugs, requiring more frequent monitoring of kidney function than the medical establishment is allowing for.

To MMM - the article merely confirmed my suspicions as regards the kidney damage tenofovir causes. Apparently all the publicity still says that the damage is easily reversed on cessation of the drug. They lie.

[Guest JizzDumpWI]

Thanks bearbandit. (I have this imaginary love relationship in my head with you, me and MMM). The thing with side effects is that they are individual. Your nasty reaction to tenovir; my nasty reaction to cialis while uncommon nonetheless occur. The thought that side effects cease when one stops taking the med is true sometimes, not true others. My hearing loss will be with me for the balance of my life. I hope it will stop getting worse now that I'm off the med; but won't know until I know... (what? did you say something?)...

The three month test rule (not really a rule, more a heuristic) has always made sense. Still does. Monitor. Become an actual partner in treatment.

[PhoenixGeoff]

The thing with side effects is that they are individual. Your nasty reaction to tenovir; my nasty reaction to cialis while uncommon nonetheless occur. The thought that side effects cease when one stops taking the med is true sometimes, not true others. My hearing loss will be with me for the balance of my life. I hope it will stop getting worse now that I'm off the med; but won't know until I know... (what? did you say something?)...

Here's my rule of thumb when it comes to drugs, both prescription and otherwise: don't take them, unless you absolutely, positively have to take them in order to survive.

Hell, regular acetaminophen, that painkiller that's been widely available everywhere for decades, can completely wreck the liver of a completely healthy young adult if he or she only slightly exceeds the recommended dose. As in put you in your grave.

If the stuff they have sitting out on the shelf for anyone to buy has that much risk attached to it, how much more risk is there to the drugs that need a prescription?

[Guest JizzDumpWI]

Thanks MascMountainMan... So true.

And each morning when I see the talking heads on TV telling us what happened overnight; at least locally here in Wisconsin there is a barrage of ads from outfits suggesting we call them (call now, 1-800-suethefukker) about (name one's nasty side effect here) for (the drug that a year ago someone was spouting off as THE way to control ....). And then followed by an ad for the new wonder drug with the FAST TALK at the end saying something that to me sounds like "may cause projectile diarrhea; unespected bleeding from fingertips; confusion; cancer; sudden unexpected death; violent domestic episodes; brain aneurysm"... Or some such claptrap which might as well be spoken in russian...

Given all that; rushing into drugs doesn't make a lot of sense. Then too; we all know of times when we would be well advised to. For me it takes discussion with doctors and pharmacists; and some personal research too.

[skinster]

Great thread! I couldn't agree more with many of your comments. Our ability to think critically had been for years undermined by the smiling ads with muscle boys promoting one retroviral drug or another. Truly one can market any kind of crap consequences in a nice shiny wrapper.

...

If you're so scared of HIV that you're willing to expose yourself to drugs like these, then perhaps barebacking isn't right for you.

...

Life's honest truth.

[fskn]

I can't possibly imagine that any insurance program, private or government, would be willing to fork over the massive expense of PrEP (not to mention the risks) when there are plenty of other perfectly legitimate and much more inexpensive and safer means of dealing with HIV prevention (and that's the old familiar "ABC" method they routinely push in sex-ed). ... What do you think they're going to tell you?

It's a question of laws and contracts, not imagination. In the US, a drug plan will cover Truvada for PrEP under exactly the same terms as any other FDA-approved prescription drug -- which means you might pay a lot or a little, depending on your deductible, your co-payment, any extra charge for brand-name medications, and any charge for laboratory tests (see below). Only plans with drug formularies and plans that somehow manage to exclude this entire category of care (cf. infertility treatment, sex reassignment, contraception, etc.) can avoid covering PrEP.

By way of example, my Kaiser health insurance plan covers PrEP with a $25 monthly co-payment for the drug and a $10 monthly co-payment for the required laboratory tests (see below). Mine is an individual plan, with higher copayments than Kaiser's employer plans.

When a patient faces a substantial risk of becoming infected (a question of what the patient actually does, not a question of what any of us might want the patient to do), it is cheaper to optionally underwrite PrEP than to obligatorily underwrite long-term HIV treatment (which involves more drugs, more tests, more visits, and yet more medical risk). Plan designers contemplating excluding PrEP from a drug formulary or placing PrEP in an excluded category of care will ask: How long do people remain in our plan (the number one underwriting consideration for all preventive care in the U.S.), what percentage of our members become infected with HIV, and how old are they at the time of infection?

Bearbandit, I appreciate your frank account of the side effects you've suffered from Tenofovir -- and I'm sorry that you're suffering. It's important for people to know how dangerous the side effects of one of two drugs in Truvada can be. Still, I hope that this will not deter people from trying PrEP. Side effects affect a minority of users. Otherwise, a drug is not eligible for initial (or continued) approval.

FDA approval of this new, preventive use of Truvada in 2012 depended on special prescribing instructions. Doctors are advised to test PrEP patients regularly for HIV (Truvada alone is not sufficient for HIV treatment), for kidney function, and for liver function, and to monitor patients' bone health. Doctors can of course ignore the published instructions, but that would be unprofessional, and given the risks involved in this case, unethical.

Again by way of example, the two main sources of PrEP in my area, Kaiser and a county health clinic, provide only 30 Truvada pills at a time. Neither source will authorize the next month's supply without STD and HIV tests, a liver function test, a kidney function test, and a urinalysis. Kaiser adds a phosphorus test as a basic measure of bone health. The goal is to quickly stop the drug in the minority of patients who are susceptible to serious side-effects (and to prevent resistance in any patients who do become infected, by immediately shifting them from Truvada to a three-drug regimen).

[bearbandit]

Bearbandit, I appreciate your frank account of the side effects you've suffered from Tenofovir -- and I'm sorry that you're suffering. It's important for people to know how dangerous the side effects of one of two drugs in Truvada can be. Still, I hope that this will not deter people from trying PrEP. Side effects affect a minority of users. Otherwise, a drug is not eligible for initial (or continued) approval.

Nothing I've said in my account(s) of tenofovir poisoning has been to elicit pity, but rather to warn guys that this can happen, and I discover on a regular basis that it's happening to more people that the makers of tenofovir are admitting to. Fortunately, it's thought that the new formulation of tenofovir (the one that sticks to the sites where HIV tends to congregate) will be available by the end if the year. The new formulation will replace the existing fumarate compound in truvada and probably be available as a stand alone drug. Were it not for the side effects it can cause tenofovir would be pretty well near the perfect drug.

I'm also glad to hear that the health authorities where you live are taking the problem seriously (as demonstrated by the range of tests they demand over such a short period): in the UK experienced patients might only see the consultant once a year if their bloods are stable.I went from normal bloods to problematic bloods in less than three months (despite a nine day stay on the trauma ward after breaking my ankle in between). No-one in Trauma thought to investigate why my bones were so soft (tenofovir), so I was discharged when they felt I'd adapted to my cast and gave the rotator cuff injury that I may have sustained at any time time in the previous month no attention at all other than to note it (my memory was already going).

Yes, I'm angry about what tenofovir did to me, and as far as I'm concerned the best revenge is living well afterwards - giving the makers of the drug a little negative publicity helps too. Truvada has been a first attempt at PrEP: They're moving the goalposts at the end of the year with the re-formulation of tenofovir. But it's proved largely successful, like cracking a nut with a sledgehammer (if you'll pardon the unintentional pun). Let's hope that future attempts at PrEP are able to avoid heavyweight drugs like tenofovir.

[Guest JizzDumpWI]

The goal is to quickly stop the drug in the minority of patients who are susceptible to serious side-effects (and to prevent resistance in any patients who do become infected, by immediately shifting them from Truvada to a three-drug regimen).

I thought Truvada was ALREADY a three-drug regimen? That had me consult my good friend Mr Google (odd name don't you think?). It would appear to be a two drug regimen; Emtricitabine and Tenofovir. So two of the three components in Atripla; which would seemingly be the first three-drug regimen.

[bearbandit]

Sorry Jizz, but there had been attempts at 3 drug combinations before that: the goal was to have a drug from each of the drug classes to knock HIV seven ways to hell. Result: poisoned patient, much of the time. I remember finishing the nevirapine trial and discovering that I'd been eating chalk for two years: brilliant! A whole drug group available to me... although I later took nevirapine, I don't think I would have enjoyed efavirenz (highly psycho-active - makes about 20% od users the feeling that they're tripping)

[fskn]

Bearbandit, no pity intended, just an acknowledgement on a person-to-person level.

I hadn't noticed that you were in the UK. Forgive my US-centric position. I'm curious how the drug approval system works in the UK, and whether Truvada for PrEP would be an officially-recognized use or an "off-label" use. Either way, there is definitely a need to specify a standard of care: initial and ongoing tests, patient education for adherence, etc.

I looked up my geographic neighbor Canada last night, and found that PrEP is not yet an approved use of Truvada there. Doctors who prescribe a drug for an off-label use have a pretty strong professional obligation to do their homework.

Here are the special instructions for PrEP in the US: http://www.truvadapreprems.com/