My $12,000 Truvada PrEP disaster

Truvada PrEP

I was once PrEP’s biggest cheerleader. But one day, PrEP caused a serious reaction and sent me to the ER, leaving me with a $12,000 bill…

PrEP is all the rage in our gay world these days. It’s the gay man’s birth control. Take one Truvada pill a day and it creates a missile defense shield around your blood cells, shooting down HIV before it can infect you.

PrEP, aka. “Pre-Exposure Prophylaxis, a medication regime where you take a Truvada (HIV drug) pill daily to prevent HIV infection.

PrEP is popular because studies show that it works. People who take Truvada every day, seven days a week, are virtually immune to HIV. No one who’s taken Truvada every day has gotten HIV, making it far more effective than condoms, which are only effective 85% of time.

But this little blue pill has a dirty secret… it’s supposed to protect you, but it can also destroy you. Truvada is a powerful drug and it has side effects.

PrEP’s promoters mislead the public about its side effects

The promoters of PrEP claim that the side effects of Truvada are minor, mundane things such as:

  • Nausea
  • Vomiting
  • Fatigue
  • Something benign-sounding about kidneys and bone density…

They sounded like the same familiar symptoms I might get from a night of over-drinking. And most side effects “resolve themselves over time.”

It was enough to convince me.

I filled my Truvada prescription and started taking it every night before bed like clockwork. As advertised, I felt fatigued after taking it, but being an insomniac, I appreciated this “side effect.”

All was good until…

My stomach was on fire

It was 3 am one morning, two weeks after I started taking Truvada. I was dreaming about having a stomach ache…

I woke up feeling sharp pain in my abdomen. HOLY COW, there’s a blowtorch in my stomach! On a scale of 1 to 10, my pain was a 10. It was unbearable.

Blow Torch Truvada Prep
It felt like there was a blowtorch in my abdomen

I let out a few blood curdling shrieks… “AAAHHHHHHH!!”

My boyfriend woke up, thinking I was having a nightmare.

“Are you OK?”

“NO! I need to fucking go to the ER, now!”

I threw on the first thing I could find in the closet, a pair of surf shorts. I slumped helplessly on the floor, bowled over by pain and enraged at how long it was taking my boyfriend to dress. It was my worst nightmare. Was this what it was like to be pregnant? Could I just give birth already!?

We rushed to the hospital, windows down, crisp night air blowing on my face. “Fuck the light, just run it” I yelled as we approached a stoplight. I wished I could pass out.

I learned from this experience that ER entrances are really hard to find when you need them. After the sloppiest parking job in the history of mankind, we stumbled into the ER.

At that moment it felt like someone was pulling at my guts and tying them into knots. I collapsed onto the floor in front of the triage desk.

There I was, a screaming heap of flesh, the very embodiment of misery.

After 10 minutes of ceaseless shrieking, I convinced the triage nurse that I wasn’t your usual late-night drug seeker. Looking up from his desk, he waved me through the door like a disaffected TSA officer.

Halfway through taking my pulse, he stopped to have a conversation with the janitor. “Can we get a broom over here? We have a potato chip spill.” Sure enough, there was a pile of Lays sitting by my feet. But seriously!? My stomach was about to explode! Did this have to be taken care of right then!?

Fortunately for me I was soon whisked into a private room where my care was handled by far more benevolent professionals.

Truvada PrEP Emergency Room

A doctor with a unflaggingly sunny personality showed up. Ruling out a burst appendix, she ordered blood tests and painkillers.

After drawing what felt like a gallon of blood, a nurse shot me up with dilaudid. That’s when I realized that all the things I’d heard about painkillers were lies. I didn’t feel high at all. Some of the edge was taken off the pain but I still felt as bloated as an overfilled helium balloon.

Two pots of coffee later, the doctor returned, wearing a satisfied grin like she just solved one of life’s mysteries.

“I think I know what’s going on… you have pancreatitis! Your lipase levels are through the roof.”

Pancreatitis??? I had to look that up.

Truvada PrEP Pancreas
Pancreas

Pancreatitis is when your pancreas gets inflamed because the digestive enzymes normally released into your intestine get trapped inside your pancreas. Your pancreas basically starts to digest itself. As you can imagine, it’s incredibly painful and your pancreas could be damaged.

“Are you taking anything besides the Truvada?”

“No.”

“When was the last time you had alcohol?”

“A week ago.”

“Then, it might be the Truvada. I looked it up and pancreatitis is a possible side effect.”

Just to rule out the possibility of gallstones, the main cause of pancreatitis besides alcohol, she ordered a CT scan. When I saw the fancy equipment I started wondering whether the hospital was in-network.

Truvada PrEP CT Scan
I could get cancer from this

It turned out I didn’t have gallstones. For the next few hours I’d continue to suffer from waves of wrenching pain. I was pumped me full of dilaudid but it turns out I’m allergic to it. My face got so swollen that you couldn’t see my eyes. The nurse gave me a huge shot of Benadryl. Within a few minutes, I was fast asleep.

I was transferred to the in-patient ward whilst in my drug-induced stupor. The room had a TV that was the same age as my mom.

Angry Homosexual Truvada PrEP
Angry, in pain and not impressed with the TV

By late afternoon, my pain was mostly gone. About 13 hours after being admitted to the ER, I was cleared to go home; like most cases of pancreatitis, mine cured on its own.

The only plausible explanation for my pancreatitis was the Truvada. About 98 people reported getting pancreatitis from Truvada in the United States between 2005 and 2012. That number could be much higher now that Truvada has gained a new lease on life as a PrEP drug.

I haven’t touched a bottle of Truvada since the hospital incident. I wouldn’t give it to my worst enemies… or maybe I would, especially if they didn’t have health insurance and I wanted to bankrupt them…

The $12,000 bill

The hospital bill came 10 days later. I nearly had a heart attack. At $12,000, the hospital was getting almost $1,000 per hour of “services.”

My insurance processed the claim and sent me a much smaller bill for about $600 – my co-pay plus my annual deductible. Still painful, but a lot better than $12,000.

But that was just the beginning. Everyone in the hospital who looked at me sent their own bill in addition to the hospital’s: the ER doctor, the internist, the radiologist… it’s a never-ending nightmare. My insurance company apparently freaked out as much as I did and started rejecting all the claims, sending them directly my way. It could take weeks to sort out.

Why you should be careful if you’re thinking of taking Truvada/PrEP

No matter what the promoters of a drug say, all drugs have side effects and you could fall victim to any of them. Until you’re actually on Truvada, you have no idea how your body is going to react.

Here is the real list of Truvada’s side effects. Notice that Truvada can screw up every one of your body’s systems: it can break down your muscles, destroy your liver and even kill you. The word “fatal” appears twice in that list.

Truvada is not like taking a multi-vitamin. It was invented as a treatment for people who have HIV/AIDS, a serious disease that could kill them. Although the side effects are bad, dying of AIDS is even worse. They have no choice, but you do.

Think twice before going on PrEP. If you sleep around like Brian Kinney or your partner has HIV, by all means go for it. But if it’s just a “nice to have” for peace of mind, ask yourself if you’re willing to risk permanent pancreatic or liver damage for it. I did not enjoy my stint in the hospital. I hope you don’t re-enact it.

100 thoughts on “My $12,000 Truvada PrEP disaster

  1. That sounds like a horrible experience! Sorry to hear that you went through that but good to know that you recovered from the pancreatitis.

    Your story will probably deter some but for those who decide to go ahead with taking Truvada, it should act as a reminder to them to ensure they have adequate health insurance. In Australia and the United Kingdom, public hospital care is free so the cost factor of treatment would not be an issue. I understand that unfortunately that is not the case in most of the United States. In terms of the risks, I’d say there are side effects with most drugs and everyone who choices to take PrEP has to make a decision about the potential risks. I think it is positive that you have contributed your experience so that others can make informed choices.

    Just a point about the effectiveness of condoms vs Truvada. You have compared ‘perfect’ (i.e. consistent daily) Truvada use with ‘imperfect’ condom use. What I mean by this is that, usually, condom breakage and slippage is associated with improper use (i.e use against the manufacturers instructions- not enough lube, using the same condom for too long, incorrect application etc). In the real world of course, some people are going to make mistakes or use condoms without full awareness of optimal use just as some people are going to forget to take their Truvada, lose it at the worst time and so on. The usefulness of comparing Truvada and condoms is limited, in my opinion. I’d say they are not so much alternatives to each other as different options for different circumstances.

        1. No thanks! 1. Why do you keep commenting on this website? Do you like the articles? 2. I do not need more misguidance counselors in my life! I’ve already had a near death experience thanks to an assassination attempt due to trusting one of my knight-advisers!

    1. Well said Ash! Spot on! I’m sick and tired of men comparing condoms to Truvada. Use condom correctly and it is 99% -100% safe . I have been sexually active for 23 years and I NEVER EVER had a condom breaking or slipping… A miracle or do I just know how to use one?
      And no side effects.

      1. Condoms are a crucial prevention tool, but they aren’t perfect. While highly effective if used 100% correctly and consistently, in the real world they prevent an estimated 70% of infections (CDC estimate — link below).

        Your personal experience of perfect use does not apply to everyone. I too have stayed negative for 20 years using condoms, but it was not just my being a good boy — sometimes it was sheer luck. They did break a few times, and that was very scary. And sometimes people are just human. In fact, only a small minority of gay men manage to use condoms every single time (link below). Why else would we still have some 50,000 new HIV infections every year, despite 30 years of telling guys to use condoms?

        I’m very grateful that we have new tools, including PEP and PrEP, to add additional security against those “oops” moments of terror. I really don’t understand why people feel the need to attack others for choosing different safety strategies from their own.

        Sources:
        http://www.aidsmap.com/Consistent-condom-use-in-anal-sex-stops-70-of-HIV-infections-study-finds-but-intermittent-use-has-no-effect/page/2586976/

        http://www.lgbtqnation.com/2015/10/the-vast-majority-of-gay-men-didnt-use-a-condom-the-last-time-they-had-sex/

      2. Condoms are a crucial prevention tool, but they aren’t perfect. While highly effective if used 100% correctly and consistently, in the real world they prevent an estimated 70% of infections.*

        Your personal experience of perfect use does not apply to everyone. I too have stayed negative for 20 years using condoms, but it was not just my being a good boy — sometimes it was sheer luck. They did break a few times, and that was very scary. And sometimes people are just human. In fact, only about 28% gay men manage to use condoms every single time.** Why else would we still have some 50,000 new HIV infections every year, despite 30 years of telling guys to use condoms?

        I’m very grateful that we have new tools, including PEP and PrEP, to add additional security against those “oops” moments of terror. I really don’t understand why people feel the need to attack others for choosing different safety strategies from their own.

        *Smith D et al. Condom efficacy by consistency of use among MSM: US. 20th Conference on Retroviruses and Opportunistic Infections, Atlanta, abstract 32, 2013.
        **LGBTQ Nation, “The Vast Majority of Gay Men Didn’t Use a Condom the Last Time They Had Sex” (Oct. 10, 2015)

  2. I am sorry you had this experience, which sounds extremely unpleasant.

    Pancreatitis is a very rare side effect. So far as I know, it has been seen only in about 1/1000 HIV-positive patients. I haven’t seen any reports before of pancreatitis as a side effect of Truvada as PrEP.

    You also mentioned the risk of liver damage, but there were no incidents of liver damage in any of the clinical trials of Truvada as PrEP, so I am not sure where you are getting that idea.

  3. It’s a big leap to assume that you pancreatitis was somehow caused by Truvada. There have been thousands of gay men who have been using Truvada as PrEP for the last 5 years (studies and real world use) and there is no record of anyone showing this condition due to it. You would have had to be very unlucky.

    The site you point to justify you getting pancreatitis from Truvada (http://www.ehealthme.com/) doesn’t mean much. Just that 98 folks self reported pancreatitis and were taking Truvada at the same time .. from 10,657 other Truvada takers… Does not imply causality. Your condition could be explain in many other ways.

    Regarding your bills. You don’t say what state you live in, but in most states providers (hospitals, doctors, labs..) on emergency room situations CAN’T balance bill you, which is what is happening to you, and must accept your insurance payment whatever that is.

    1. Actually pancreatitis due to Truvada and its component drugs isn’t unheard of as you imply, hence why it’s listed as a side effect both on Gilead’s drug inserts and pretty much any thorough side effect list. And no, I’m not the only mention online of someone getting pancreatitis from Truvada/PrEP – just google “truvada pancreatitis” or even “tenofovir pancreatitis”

      A more common side effect is elevated liver function – which I also had at the time of hospital admission. Being young and healthy and lacking any other risk factors for pancreatitis or elevated liver function, when both are known side effects of Truvada, the only drug I was taking, it’s the most probable explanation.

      It’s actually not true that ER providers can’t balance bill you in most states. If you end up in an out-of-network hospital – or even if you’re in-network but get treated by out-of-network providers – you could be balance billed in the majority of states, i.e. http://kff.org/private-insurance/state-indicator/state-restriction-against-providers-balance-billing-managed-care-enrollees/

      Even in California, you can be balance billed for ER services under these conditions:

      “In California, restrictions on balance billing apply only to HMOs and PPOs that are licensed by the California Department of Managed Health Care. These restrictions do not apply to PPOs that are regulated by the California Department of Insurance.”

      And even if providers technically shouldn’t balance bill you, they still can if you insurance starts rejecting claims. They will seek payment from you until such time as your insurance gets their act together, i.e. you spend hours on the phone whipping them into shape 😉

      1. Providers can’t balance bill you in a majority of states if you are on an HMO plan as it says in the link you provided, and in some states if you are on an PPO plan too. Don’t know what plan you have. It doesn’t mean ‘technically’, it means they just can’t.

        If you are on a PPO plan in most places you are just screwed and have to pay whatever random amounts the providers at ER or at your outpatient surgery decide to charge that day. And there is nothing you can do about it, before or after. PPO plans give the illusion of choice with limited liability but in reality it isn’t further from the truth. A PPO plan will pay out of network whatever they feel like it (hint, less than in-network) and the out of network provider will charge whatever they feel like it (hint, orders of magnitude more than what the plan paid, if they paid). You are responsible for all that’s unpaid.

        1. Dude, you’re not even reading right. See the heading that says “applies to out-of-network providers”? Only 13 states don’t allow out-of-network providers to balance bill you. And when are you most likely to go out-of-network, because it wasn’t practical to check beforehand? During an emergency.

          And guess what, even if you do go in-network during an emergency, you might still be seen by out-of-network providers at that hospital, because physicians are often not employees of the hospital and bill separately.

          So it doesn’t matter at that point whether you’re PPO or HMO, you’re just SOL.

        2. If the provider doesnt par at all you pay the difference. If they par but its only with one type(trad but not ppo) then you pay the difference up to the approved amt. If you go out of state then if they par then you would pay up to the approved amt of that states ins company. Sorry for all the acronmys but its too much to type. Also this is blue cross rulrs.

    2. Not all doctors keep good records, & some are prone to putting mi-information, into paitient files, as i have found out, to my detrement & the consultants embarressment, when he (a professer) also breached privilaged information Publicly, which had been obtained illeagaly – the local hospitals legal team are at present trying to protect this ‘licenced medical practioner’ , & thats not acceptable.
      Oh, & as to why im on truevada, i was raped/sodomised, & the local police, were/are to corrupt & biased, to act on the plaint – i also got anal cancer, as a result of the ‘rape’.
      I went from viramune to truvada, & had such bad reactions to the mix of drugs, that i stopped them, to stop the mixed side-effects – now its the side-effects from truevada & the drugs used for the cancer investigations.
      All Pharmacuticals have unwanted side-effects, many of these drugs, myself is allergic to.

  4. And Celexa gave me hepatatis. Sometimes drugs give weird effects to people. Does that mean I think no one should take Celexa because I got hepatitis? No.

  5. Nobody has lied to you about the side effects of Truvada. Any website with Truvada information will say pretty much the same thing: common side effects are minor and usually dissipate on their own. Serious side effects are possible, but are rare and nearly always resolve once Truvada is discontinued.

    Truvada can save hundreds of thousands or even millions of people from contracting the lifelong, debilitating and sometimes fatal HIV virus. And because you got pancreatitis, possibly from the Truvada and possibly not, you now believe nobody should take it? You cannot be serious. People get pancreatitis and 30% of cases have no known cause. The primary cause though is alcohol. Do you drink alcohol?

    But let’s assume it was the Truvada, for the sake of argument. Are you saying we should not take drugs that can possibly have serious side effects? That would rule out every drug we have.

    Did you know that aspirin can cause all of the following problems? Do you think we should not take aspirin, too?

    gastric mucosal lesions and bleeding
    rectal stenosis
    appendicitis
    nausea
    vomiting
    gastrointestinal hemorrage
    peptic ulcers
    perforation
    small bowel enteropathy
    esophageal ulcerations
    acute renal (kidney) failure
    interstitial nephritis
    papillary necrosis
    proteinuria
    hematuria
    hypoprothrombinemia
    thrombocytopenia
    thrombocyturia
    megaloblastic anemia
    pancytopenia
    aplastic anemia
    eosinophilia
    bronchospasm
    rhinitis
    conjunctivitis
    urticaria
    angioedema
    anaphylaxis
    Stephen-Johnson syndrome
    lichenoid eruption
    aquagenic wrinkling of the palms
    papuloerythroderma
    hepatotoxicity (kidney toxicity)
    cholestatic hepatitis
    pancreatic cancer
    dehydration
    hyperkalemia
    respiratory alkalosis
    metabolic acidosis
    hypoglycemia
    tachycardia
    orthopnea
    ventricular ectopy
    conduction abnormalities
    hypotension
    acute deterioration of intracerebral hemorrhage
    agitation
    cerebral edema
    coma
    confusion
    dizziness
    headache
    cranial hemorrhage
    lethargy
    seizures
    tinnitus
    subjective hearing loss
    Reye’s Syndrome
    rhabdomyolysis
    hypernea
    pulmonary edema
    tachypnea
    hypoglycemia
    periorbital edema

    1. “The primary cause though is alcohol. Do you drink alcohol?”

      I was binge drinking that night and lost count after 5 drinks. Dude, read the whole post before you school me on alcohol being a cause of pancreatitis.

      It’s extremely misleading to say that the side effects of Truvada are just nausea and minor stomach issues when there are reported cases of far more severe side effects.

      Thanks for clogging up the site with side effects of aspirin, in fact there’s a lot of general awareness about the side effects of aspirin that’s why it’s not a slam dunk even for people at risk of heart disease to take it everyday. This despite the fact that daily aspirin can be very beneficial for middle aged people and older. It’s well known it can cause serious stomach problems – they’re pretty upfront about that and risks and benefits need to be weighed before people start therapy. I’m saying we should have the same awareness and discussion around Truvada.

      1. It would be far easier to take your column seriously if you weren’t so incredibly over-dramatic about every detail. I agree with the poster who stated you could have gotten pancreatitis from something else. It existed before Truvada. In fact, I have had pancreatitis. I rarely drink, and this was before I started using PrEP. Maybe my body was reacting to my future decision.

    2. To me this post was about being care. This drug is kinda for sex workers and swingers. If I was changing partners every 3 months I would take it. I wanted to take it but I will wait for a time when im busy.

    3. I agree with you. My grandmother almost died from taking an Advil. She had a very rare reaction that caused all her skin to basically melt off (she has since fully recovered). To come out against a drug because of a rare side effect is reckless and irrational. And this without a guarantee that the pancreatitis was caused by the Truvada. It MAY have been the Truvada, but it may also have been coincidence. I had to have an emergency cholecystectomy that came out of nowhere and I was no absolutely no medications at the time, nor was I drinking. Would it have still happened had I been on Truvada? Probably. And I would also probably feel the same way as the writer of this article – that the Truvada somehow contributed to my gallbladder failure. But I wasn’t on Truvada (or any other medications) at the time, and thus had nothing to blame it on other than bad genetics and timing.

      To the article writer’s defense, nobody can be 100% certain that one medical malady was caused by a specific trigger. But that implies that we should tread that much more cautiously when attributing a personal experience to a particular cause. For me, as severe as I can imagine the pain of pancreatitis can be (and my gallbladder episode was scarily similar in scope of pain as described by this writer – not even morphine helped assuage it), I would rather endure a day of that than a lifetime of HIV. But that’s my own choice, and others, like the writer, have decided otherwise.

      But what I do not think is brilliant or rational is to post against something that may save many men from contracting HIV because of one personal misfortune. So the writer had an unfortunate, rare side effect. Don’t seed paranoia into the minds of all those who may still benefit from the medication! Interestingly, the writer mentioned that he had another negative (allergic) reaction to the pain drug he were given, yet the writer hasn’t railed against IT, has he? No, he hasn’t. Which indicates that this entire post is just an irrational diatribe by a self-professed “Angry Homosexual” with an computer and internet connection.

      Honestly, I feel bad for his boyfriend.

  6. I think it’s important to keep an open mind and consider the consequences of taking Truvada. It’s an antiretroviral drug. That class of medication is very potent. It’s not a wonder drug vitamin pill that passes through your system harmlessly without any effect as the author states. I’m so sick of the idea that popping pills is a cure all method to any social problem. Popping pills may provide a false sense of security and great profit for the companies that make them but let’s remember aside from the pain of the side effects Truvada won’t protect from other STIs that are also incurable like genital warts and herpes. Also, it’s a new drug. We don’t know what long term side effects of Truvada are and if it can compromise the immune system from other STIs also. Sex is about consent and choice. Sure it’s great to have a prophylaxis option now for HIV but it isn’t a substitute for responsible decision making. Nor should any sexually active gay men feel pressured into taking any drugs just to have sex. Having sex without a condom thus far I think is far more harmful then having sex without Truvada.

        1. Condoms only reduce the risk of acquiring herpes by 30%. And that’s if you use them correctly every time for both anal *and* oral sex. We can be sure *that* doesn’t happen, so it’s likely that the 30% risk reduction you may get from Truvada is better than the protection you could get by using condoms correctly every single time.

          1. Are you enjoying the side effects? Or are you going to deny you’ve never felt a single a side effect from Truvada?

          2. I did have some physical side effects during the first 10 days or so on Truvada. I didn’t sleep well, had vivid dreams, and felt a little knocked out. For the two years since then, I have no side effects at all. I’m not unusual. This is the experience that most HIV-negative people have with Truvada: either no side effects or relatively minor side effects during the initial uptake period, and then none at all after that. Of course, all drugs have side effects in some people, and a very small number of people do have more serious side effects from Truvada. The record from multiple clinical trials and from clinical practice experience leaves no doubt that the risk of that is very small. Of course, another side effect of Truvada is the virtually completely elimination of the risk of acquiring HIV, and that side effect is one I enjoy very much.

    1. Thank you Aom for writing this. Modern society does seem to think that pills will solve everything, but the human body is so complicated and articles like this just show how sometimes the side effects can be very serious. It’s a tradeoff and a gamble for many.

  7. i completely agree with you that every drug has a freaken side effect. I went on some sort of anti deperession medication 3 years ago while I was in university. The doctor had told me about side effects like upset stomach, so take with a meal, or like May cause headaches, one of the side effects that was not listed was irregular orgasms. Prior to going on the anti depressants, when I jerked off, and was close to cumming, I would be able to feel everything in a normal sequence of events:
    1) climaxing
    2) orgasm
    3) ejaculating – cum shooting out.

    On week 2 of the drug when I jerked off I noticed that I would start cumming but didn’t feel the orgasm (that good feeling until 2 or 3 seconds later, by then it was too late, the cum was all over my hand my cock slippery and unable to finish my orgasm which left me unsatified and even more depressed because how could I function in the bedroom In that state. From that point on I gave up the meds. To this day my ejeculation and orgasm are still not quite in sync. Wishing I never went on the drugs in the first place.

  8. There is a lot of shit going around abut how this drug can prevent HIV but the reality is that this drug should only to be used in high risks situations such women who have HIV positive partners but what to reduce those risks or have children with their pos partner and HIV plus/neg gay relationships. It is not to be used to practice unsafe sex with multiple sex partners. It’s a complete joke.

    1. Everyone uses it as an excuse to have free for all unprotected sex cuz apparently it’s too difficult to spend five seconds rolling a condom on. I would not have sex with any man who uses Prep because it’s an admission they are into unsafe sex.

      1. Well that’s an absurd (and disgustingly judgmental) assumption if I ever heard one.

        The World Health Organization recommends Truvad to all men who have sex with me. Period. This drug, though not without certain risks, has the potential to virtually eliminate HIV if used by enough people (San Francisco is proving this.)

        I take Truvada in addition to condoms to be responsible for myself and the gay community as well.

        People lie about their status, condoms break, and sometimes poor decision-making can all cause you to become infected despite the best of intentions.

        If nothing else, this drug has virtually eliminated my anxiety surrounding HIV and for that I’m very grateful.

  9. The most devastating side effect of truvada is the eventual kidney damage, it will happen to everyone after a 10 years of use especially once one reaches 50.
    There is no cure or reversing kidney damage

    1. Young, That is completely untrue. People have been taking this medication for a long time, and the vast majority have no loss of kidney function. In the clinical studies, a reduction in kidney function was seen in one-half of one percent of patients; and all of them got back to normal kidney function as soon as they stopped taking the medication. There is no evidence whatsoever to support your claim. If you think that there is, please post links to the published research papers, studies, or medical case studies. Otherwise, please stop spreading nonsense.

  10. I sympaththize with you on your story I really do , but something we need to realize is , we have been provided with a tool that can eradicate HIV all together . who knows if the cure will ever be found . If 1 generation of the worlds population could adhere to a lifetime of combination safe sex , PREP , abstinence the battle could be over

  11. This may be a bit off topic but why are you taking Truvada when you have a boyfriend? A simple analysis of the information revealed here on your various pages would indicate that you encourage Asians to abandon their White boyfriends, yet you have a boyfriend. If your boyfriend is Asian, and you are taking PrEP in that case, then he is in a tiny tiny minority of HIV positive people. Much more likely that either A. you and your boyfriend sleep around or B. the odds are your boyfriend is a positive White man (since a very large percentage of total HIV cases, not just new cases, in the United States are still white males, and since you’ve proven odds are Asians still prefer Whites) . In which case if either is true, you shouldn’t be giving anyone advice about dumping their White partners!

    1. Could you be any more ignorant!

      Many people lie about their status or don’t know it (the window period can take a while to show up on tests). Condoms are far from 100% effective.

      People should be able to explore their sexuality freely while also taking reasonable precautions.

      Truvada is an important part of that prevention for those who want it.

  12. Well, did you know pancreatitus existed before truvada was invented? You happened to get both at the same time, but have you thought about other things?

  13. I am very sorry to hear about this pancreatitis event, but as a doctor who teaches internal medicine, and as an HIV specialist who prescribes medications to treat and now to prevent HIV, I would like to point out something: a drug-caused pancreatitis would increase the lipase enzyme, but not necessarily the liver enzymes. On the other hand, passing a gallstone, which is, after alcohol, the most common cause of a pancreatitis event (more common than medications in this country), WOULD elevate liver enzymes. Did you get an ultrasound to exclude gallstones? Did the ER consider this explanation before jumping to Truvada as the explanation?
    Also: the prior commenter was correct that the 98 cases of pancreatitis reported while on Truvada are simply cases of this diagnosis in people taking the drug -they are NOT cases where a causal association between the drug and the medical event was proven. There are dozens of examples in medicine where something “everyone knows” was “obviously true” is found after research to be false. Given the many thousands of Truvada patients who have not had pancreatitis, we need to consider other ideas, like a gallstone, before assuming it was “obviously” the drug. Given the liver enzymes change, I’d strongly consider gallstones passage as a possibly- better explanation.

    1. It will be interesting to see if there’s another attack or pancreatitis and if it involves gallstones this time. I bet we won’t hear about it.

  14. While I totally sympathize with you for what seems like a horrific experience, it’s important to not dissuade other people from trying Truvada based on your relatively isolated experience.

  15. In addition to your unsubstantiated fear-mongering about PrEP, your headline (“My $12,000 Truvada PrEP disaster”) is a lie. Deep inside the article you explain, “My insurance processed the claim and sent me a much smaller bill for about $600.”

    But most people aren’t going to read the article carefully enough to ferret out your bullsh*t. They’ll see the scary headline, and some of them will be dissuaded from trying PrEP — including people at high risk. And, just maybe, some unnecessary infections will result.

    And those will be on you. So, congrats.

  16. After almost a decade on Truvada I took myself off of it. I’ll never take another nuke the rest of my life. The trust I had with modern medicine is severely tarnished. So many things have improved since discontinuation I’m conflicted as to how I should feel: anger, disappointment, sociopathy, relief or sympathy.

    We really don’t have sufficiently sensitive assays to test for nuke’s dangerous side effects which, in my experience, do not abate and are cumulative. Yes, Truvada and it’s relatives, have lowered the community viral burden and reduced vertical and horizontal transmission but history will show that these have come at a horrendous cost to the individuals taking them as well as the commensurate bacteria we share a home with.

    1. I’m sorry you had a bad experience, but could you be more specific about the negative effects of Truvada that you’re warning about? You say nothing about what you experienced yourself, let alone what you mean by the dark, sweeping warning that “history will show” a “horrendous cost.” Could you maybe put that in the context of the horrendous cost of HIV infections? And would you mind sharing what your own current treatment strategy is? You’re apparently HIV+ or you wouldn’t have been taking Truvada a decade ago.

  17. I have a prescription for prep. I am 29 and after 6 months of use it caused vitamin D defficency which led to severe arthritis. Imagine being under 30 & lifting something and feeling like your hand was going to break as the side affect of taking a pill sold to you by a drug company to prevent a disease you don’t have in the first place. The OP is only warning people of his experience. But hey if we can all take an EXTRA precaution in ADDITION to condoms then why not? I mean this is the answer to all gay men’s prayers and hey if we can’t lift shit and break all our bones and our stomachs digest themselves then hey atleast we took the extra precaution, who cares if it ends up making us to sick and to weak to move to actually have the sex that we Prep’d for.

    1. I’m sorry to hear about your arthritis. According to the CDC, 52.5 million American adults have been diagnosed with arthritis. No more than 25,000 are on PrEP. Correlation does not equal causation.

  18. I’m so glad I found your article. I just completed my second month on Truvada. In the last three weeks I’ve been having cramps in my stomach, dizziness that caused me to fall on my face a couple of times, headaches, leg aches, skin rashes and swollen achy joints.

    The only thing in my life that is different is the Truvada. When I started I had a couple of weeks of dizziness and nausea and some vivid dreams. Then I felt pretty decent.

    Then a few weeks ago symptoms started coming back. I am exhausted all of the time – I’ve gone for 4-5 nights in the gym to 1-2 at best. I’ve moved my normal midnight bedtime to 10 pm and still i feel like I haven’t slept.

    I’m going off of Truvada today and hope things get better. Thanks for the information.

    1. I’m sorry to hear about your side effects, all of which are not unusual relatively early on. For the vast majority of people they don’t last more than a few weeks. It’s entirely possible that you could be “home free” with just a little more patience.

      I’d urge you to consult with your doctor before unilaterally discontinuing PrEP. Maybe it’s not for you, but don’t make a major decision like this based on one anecdote.

      A great place to go for information about PrEP, where you can ask experts and other users about their experience, is the PrEP Facts Facebook group: http://www.facebook.com/groups/PrEPFacts (it’s a closed group — your other Facebook friends won’t know you’ve visited or see your activity). With over 12,000 members, it’s a much better cross-section of the typical PrEP experience that a single blog by one “angry homosexual.”

      1. Thanks for the suggestion DW. I will get to my doc and talk to him. He’s a bit hard to get to. I did stop on Wednesday and have felt a lot better starting about 24 off the drug. The dizzyness abated along with the leg aches and stomach upset. My assistant who didn’t know I was in the medication but knew I haven’t been feeling well remarked today that I looked like I finally got some sleep and I feel that way.

        I am 100% in favor of PreP and I think as many people should be on it as can. It I ever get another boyfriend then I would consider going back on. But now my partners are a coupe of select buddies and we are always totally safe. Condoms worked for me for the last 30 years and they will have to for another few I guess.

        I have always been pretty sensitive to medications. I can tolerate pain killers and some antibiotics because of the rashes and other symptoms. I’m going to join the group (if they let me) and study PreP even further. Thanks again

        1. Glad you’re feeling better. No one should feel pressured to get or stay on PrEP if it’s not for them. There is, however, a medical protocol for discontinuing it. Particularly if there’s any chance you might have been exposed to HIV during sex within the last few days, you should stay on it for a while rather than just quitting cold. I’m not the expert — folks in the PrEP Facts group can probably offer more info. (I’ve never heard of them not accepting someone who asked to join!)

  19. I just started taking Truvada yesterday but have already noticed some adverse side effects including upset stomach, and EXTREME lethargy. I never sleep past 5:30, yet this morning I awoke at 10:00 feeling like I had been run over by a truck (good thing it’s the weekend). After having my normal 2 cups of coffee with my usual breakfast I decided to lay down on the couch to “just rest”; the next thing I know, its 5:00 p.m. and I am awakening again feeling as if I haven’t slept at all. I am hoping not to experience further lethargy or other more severe side effects as I do believe the benefits outweigh the risks (else I would not be taking Truvada as Prep).

    I must comment that the assumptions promulgated by some of the more [obviously] ignorant that those who choose to initiate use of Prep are sex workers, sluts, or those who want to pursue hedonistic sex practices sans consequences of HIV, are at best ridiculous, and far more irresponsible than not knowing one’s status yet continuing to have unprotected sex.

    Good luck to all in your pursuit of health and happiness.

    1. John, Congratulations on your decision to start PrEP. Some people do experience fatigue or lethargy initially after starting Truvada. Some also have some stomach discomfort. Generally, these side effects dissipate within a few days or at most a couple of weeks. Please check out the “PrEP Facts” group on Facebook if you have questions. And yes there’s lots of ignorance out there – try to ignore it! 🙂 Cheers! https://www.facebook.com/groups/PrEPFacts/

  20. Hello. Can I ask how long you’d been on PrEP when this ER incident happened?

    I’m on my fourth day of Truvada. The only side effects I’ve experienced so far are fatigue and dry eyes (even though the latter was not on the list given to me by my doctor). On that note, has anyone also gotten dry eyes as a side effect?

    Anyway, I had been on the fence about going on PrEP, but I finally took the plunge. My main concern was the effects that it could possibly have on my liver and kidneys over time. I certainly hope I don’t get adverse effects from taking the drug and that it’s all worthwhile in the end.

  21. @j, it’s not unusual to have some minor side effects that usually don’t last more than a few days or weeks. A good place to talk to the community about what to expect is the PrEP Facts Facebook group. With more than 12,000 members it’s a better cross-section of the typical experience than one column by a single user who obviously didn’t have a good impression. https://www.facebook.com/groups/PrEPFacts/
    (It’s a closed group — your other Facebook friends won’t know you’ve joined or see your posts).

  22. I know this blog is old but I’m taking Truvada for about a month now and have a “circle” of side effects. We went from dizzy to headaches and now I have very vivid and often disturbing dreams that wake me up 2-3 times a night. WONDERFUL!

    I do have to take exception with the headline of this post. I get you had a bad experience but it really isn’t fair to call this “My $12,000 Truvada PrEP disaster” when you actually paid $600 after your insurance coverage. That is how insurance works… hospital bills a fortune, you pay the balance after coverage. You HAD pain and a serious side effect, you did not have a “$12,000 disaster”.

  23. It’s a timely warning for taking care around HIV meds. These are potent anti-retrovirals that should only in my opinion be prescribed by a specialist trained in HIV therapy. I notice more and more gay app profiles saying the seeker is ‘on PreP’ like it’s some kind of magic bullet and replacement for safe sex. It might protect against HIV, but won’t stop you catching Chlamydia, or Gonorrhea, or Syphillis, or Herpes or [insert preferred STI here]. That said, I’m glad I live in Australia where Truvada will be handed out for $5.20 – $38 depending on whether you work or not and hospital care is free unless you choose to pay. $12,000 for one visit? That’s outrageous.

    1. Daniel, the writer lied about how much he actually was out of pocket. It was $600, not $12,000. Makes for a sensational headline, but it’s not true.

      In the U.S., PrEP is prescribed under careful medical supervision. Among other things, PrEP users are tested every 3-6 months for STIs. That’s far more frequently than most people who are not on PrEP. Infections are detected quickly, treated, and prevented from further spreading.

      STIs were already alarmingly on the rise long before PrEP. Researchers consider PrEP part of the solution, not the problem.

      See: http://www.thebodypro.com/content/77207/prep-screenings-seen-as-tool-to-combat-std-surge.html

      1. I agree prep is a really good thing but users need to be educated it’s not a magic blanket and here it’s the same re testing for sti’s.

        1. I get a little tired of random people telling me, as a PrEP user, that I “need to be educated” about it. I have read just about everything published about PrEP, and continue to do so. It took a lot of research and work to get on PrEP, especially since when I started relatively few providers would prescribe it. I am very well informed about sexual health issues, certainly more than any of my gay friends who are not on PrEP. And I discuss my sex life openly with my doctor every three months. Can you say the same?

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