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.

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

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  2. All, I found this blog after googling. So…I took Truvada once TWO years ago and I felt fine but the next morning I woke up throwing up. It was bad. So I immediately stopped and then after becoming a bit more sexually active I decide to go at it again. This time with Descovy. I take the pill after dinner and I feel great! Go to sleep no problem. Then I wake up…holy smokes. The same nauseous feeling I had when taking Truvada! I couldn’t believe it, it was like dejavú. And I had a bad humming in my right ear the entire day as well. Clearly, I can’t tolerate it. This is my bodies natural way of saying you better stop I don’t like what you’re giving me. So condoms it is! I guess not all of us could tolerate it. And miss me with that noise about taking it longer and getting “used” to it.

  3. I wouldn’t ordinarily have commented, but: shout-out to “DW” for taking the time over and over again in these comments to counter mis-information. I get so sad when I encounter people spouting falsities, that I just don’t have the motivation to try to counter each and every one with facts, but …this person’s gone and done just that. Bravo.

    (I would’ve emailed DW directly, but …can’t see any way to see more info about a commenter)

    1. Thanks a lot, Michael. I am passionate about this subject because I have several friends who contracted HIV after refusing to take PrEP, at least in part because they were needlessly afraid of side effects. I hate to think how many people ended up HIV+ because of the misinformation in this blog. For a long time it came up among the first few results if you googled “Truvada side effects.”

      The “angry homosexual” who wrote this garbage seems to have disappeared — he never replies to comments and has not updated his blog in over a year. If he had any sense of shame he would delete it or at least correct it. The only alternative is for those of us who care about accuracy to keep responding.

  4. Hey guys. I started PrEP in May of this year.
    I began to notice the nausea A LOT at work. My doctors told me “try to make sure you eat before taking it”, okay, so i began to take it around noon so that i for sure had eaten something. Weeks pass and i begin to notice i keep feeling this burning sensation in my abdomen and bloated like. I go to the doctor again, i better my diet and wait for improvement. Nope. I kept having nausea spells, and in the morning almost the same time everyday at like 4:30/5am i would be running to throw up. It is now September, had an endoscopy and MULTIPLE lab tests of all ranges, an ER visit, ultrasound and even different medicines to help with with “the acidity Of my stomach”. I’ve lost 20lbs and am now reaching borderline underweight. I am not starting my first week being off PrEP to test it out.

  5. Sorry you had a side effect. I wish this had been available when my long term partner and my friend’s dead bodies were stacking up like cord wood. I remain an advocate for PrEP.

  6. Anybody out there experience a loss of taste and smell after beginning Truvada? I’ve been on it a month and a week. I began with a metallic taste in my mouth that ruined the taste of just about everything, and now I’m practically (if not wholly) nose-blind and can’t taste a thing. Anyone go off the drug and get these senses back?

    1. I’ve never heard of loss of taste or smell as a side effect of Truvada. Most likely the timing is a coincidence. You should probably consult your doctor about any other possible causes.

      You could try asking the question in the PrEP Facts Facebook group. It has 20,000 members, so if someone else has had this experience you’ll likely find them there. (It’s a closed group — your other Facebook friends won’t see).

      1. Hey can you tag me on the group, I searched all over facebook and couldn’t find it my username is Silvanus_Lule

        1. I don’t think it’s possible to tag a non-member in a group. But try this direct link (remove the spaces): www. facebook. com/groups/PrEPFacts/

  7. Thanks for sharing your experience. I have been taking Truvada for only 9 days at this writing. At noon each day. I have experienced most of the listed usual side effects. They say less than 9% occurrence for each but I have had them all. This afternoon was the worst so far. Every bone ached including my head. Just moving my body was a struggle with extra pain. I do like to fuck a buddy bareback who recently tested HIV+ so I thought maybe not having to worry about such things would be worth it. Now I am not so sure.

    1. Sorry you’re dealing with that, @Mo. Some people do experience side effects but they rarely last more than a couple of weeks. Try to stick it out if you can. It’s worth it for the peace of mind.

      You can learn from other PrEP users (about 20,000 members, so a much more representative sample than one blog from an “angry homosexual”) in the “PrEP Facts” Facebook group. It’s a closed group (your other Facebook friends won’t see).

  8. I just got back from the hospital for the same thing. I started taking Truvada in July 2017 and I did not have any side effects for the first few months. I thought I was lucky – it was just like taking a daily vitamin. One night towards the end of November, I got a horrible stomach pain that also came with back pain. All I could do was pace around the house. It lasted for about 4 hours. A month later, it happened again. This time I went to the ER because I was still in pain after 6 hours. They ran the CT and bloodwork but didn’t find anything wrong. They sent me home with Tramadol and something for abdominal cramps. It happened again just this past Sunday, but it was the worst pain yet. If it had hurt any worse I would have passed out. My partner drove me to the ER. They initially thought it was a kidney stoney, but another CT scan and round of bloodwork didn’t find anything. They gave me two rounds of morphine, but that had nearly no impact on the pain. It brought it from a 9 to an 8. The doctor said that the stomach and back pain were listed as side effects of the Truvada, and there was nothing else in my history that could be the cause. (I don’t smoke, drink or use drugs). He didn’t call it Pancreatitis, but he did advise me to stop taking the Truvada.

    1. I’m sorry you had that experience, Kenneth. I hope you’ll make a quick recovery.

      Every medication has potential drawbacks, but most people take Truvada for PrEP without complications — and it has prevented thousands of HIV infections. I hope people will make their decisions about it based on sound professional advice, not individual bad experiences.

      You can Google and find horror stories about anything. If you went by online anecdotes you’d never take any medication (or eat any food or patronize any business, etc., etc.) If you’re at risk of HIV, you’re better off taking PrEP now than getting HIV and ending up taking a lifetime of even more medications.

      May I recommend that anyone with questions or concerns visit the Facebook group “PrEP Facts.” With nearly 20,000 members it’s a much more representative cross-section of user experiences, both good and bad, than isolated stories on someone’s blog. (It’s a closed group — your other Facebook friends won’t see your activity).

  9. I feel like I need to share my experience as I hate to see precautionary principle exercised over exaggerated perception of risk. First, I have been on PREP for over 3 years, and my only side effect has been increased triglycerides( I’m healthy, weight train and exercise 5 to 6 days a week). Second, following the link to the actual side effects from drugs.com, note that all of major side effects have 10% or less chance of occuring.

    With that in mind, personally believe sexually active individuals with a high chance of being exposed to HIV should try using PREP, review the side effects if any, then make the decision whether to continue .

  10. Considering the statistics that 1 in 5 MSM (gay/bi) guys has HIV in USA it’s therefore insane not to use prep unless u love condoms and will use them 100% of time (which according to studies: only 16% of gays in USA do). Couple that fact… with the fact that CDC now says condoms are only 70% effective at preventing HIV for anal sex…and it becomes clear that prep is our best option since it’s only failed twice. Extreme nausea was clearly a specified (yet rare) possible side effect …so wasting 12k at hospital was pure ignorance…u should have known it was a side effect and just demanded pain killer to get threw the nausea pain until it passed within many hours. Once u made it threw that pain of temporary nasea u should have then eased back into using prep by taking it once every 5 days for week or two and then every week after that taking prep a day sooner until it was everyday. You would have been fine…it was just too much too fast for your individual body to handle your prep everyday from day one..it’s rare but happens to some people. As far as side effects, viagra is actually more life threatening if u read it’s possible side effects….prep side effects are extremely rare and doctor is required to monitor your kidney liver function to make sure u don’t experience any dangerous side effects. There is a new prep Medication being clinically trailed now so maybe u should try that…if to paranoid and fearful of truvada prep. In conclusion, HIV has much worse side effects then prep and since HIV is infecting gays so devastatingly it’s insane not to protect yourself especially if condoms are not used 100% of time !! Since studies show zero protection from condoms if they aren’t used 100% of time and only 70% protection If used 100% of time.

  11. Considering 1 in 5 MSM (gay/bi) guys had HIV in USA it’s insane not to use prep unless u love condoms and will use them 100% of time (which according to studies only 16% of gays in USA do). Couple that fact with the fact that CDC now says condoms are only 70% effective at preventing HIV for anal sex and it becomes clear that prep is our best option since it’s only failed twice. Extremely nausea was clearly a rare but specified possible side effect do wasting 12k at hospital was pure ignorance…u should have known it was a side effect and just demanded pain killer to get threw it until it passed within many hours. Once u made it threw that temporary nasea u should have then eased back into using prep by taking it once every 5 days for week or two and then every week after that taking prep a day sooner until it was everyday. You would have been fine…it was just too much too fast for your individual body to handle your prep everyday from day one..it’s rare but happens to some people. As far as side effects, viagra is actually more life threatening if u read it’s possible side effects….prep side effects are extremely rare and doctor is required to monitor your kidney liver function to make sure u don’t experience any dangerous side effects. There is a new prep Medication being clinically trailed now so maybe u should try that…if to paranoid and fearful of truvada prep. In conclusion, HIV has much worse side effects then prep and since HIV is infecting gays so devastatingly it’s insane not to protect yourself especially if condoms are not used 100% of time !! Since studies show zero protection from condoms if they aren’t used 100% of time and only 70% protection If used 100% of time.

    1. Please go back and read articles before commenting. I’m all in favor of preventative medication, but let’s be realistic, not all men can tolerate Truvada/Descovy just like not all women can tolerate all forms of birth control. Those of us who *can* take it *should* take it, but anyone who has a severe enough reaction to warrant being given ER grade pain medicine and a CT scan and than be *TOLD* by the doctors to stop taking it DEFINITELY shouldn’t take it. He didn’t have “nausea pain”…he had PANCREATITIS! And ER docs don’t rush people into private rooms and give them high-level pain medication because they “say” they’re in pain, they look for physiological signs of severe, debilitating pain (cold sweats, tremors, improper eye dilation, and many more). The only “pure ignorance” here appears to be yours, quite literally as you are *ignoring* both the original posters diagnosis *and* the well known fact that not all people can tolerate all drugs! There are people who have died (quite horribly, I might ad) from sudden allergic reactions to Ibuprofen, countless women cannot take birth control, Truvada is no different, for most people it’s fine for some it’s deadly.

  12. As the NHS (British national health service) claims – male condoms are 98% effective (85% figure is maybe true for female condoms?)

    http://www.nhs.uk/Conditions/contraception-guide/Pages/male-condoms.aspx
    Hospital bills in the US merit a whole new discussion by themselves.
    I usually get truvada for free from the NHS as soon after having unprotected sex as possible. NHS claims that the drug is somewhat effective if taken up 48h after unprotected sex.
    Unless you have unprotected sec with strangers weekly or more frequently there is little need to take it every day.

    1. I sincerely hope you are not really taking a dose of Truvada 48 hours after unprotected sex and thinking that is “somewhat effective.” That is extremely misguided.

      You are confusing two treatments:

      1. Intermittent (or “on-demand”) PrEP: this involves taking a double dose of Truvada anywhere from 2 to 24 hours BEFORE sex, then single doses for two more days (look up the details — it’s a little more complicated than that). This is a perfectly valid and proven method of taking PrEP if your sexual patterns are predictable. But many people find it easier just to get into the routine of a daily tablet.

      2. Post-exposure prophylaxis (PEP): this is an emergency measure in case of accidental HIV exposure. It consists of a *month* of doses of Truvada (plus, usually, another drug, Isentress). It must be started within 72 hours of exposure to be effective. It’s a serious regimen and often has unpleasant side effects. It’s certainly not something to be done routinely.

      The NHS figure you cite is effectiveness of condoms against *pregnancy*, not HIV. The US CDC puts condom effectiveness against HIV at 70%. They work well (and are cheap, and help prevent other STIs) *if you use them correctly every time.* Few people manage perfect use.

      Use whatever method works best for you — condoms and/or either daily or intermittent PrEP, taken correctly and under proper medical supervision. But do not spread dangerous misinformation or put yourself at risk by misusing Truvada.

      Also: the idea that you’re only at risk of HIV if you’re having regular unprotected sex with strangers is an inaccurate stereotype. A very high percentage of HIV infections are transmitted within relationships with known partners.

    2. How long do you take it..for the full 28 days?
      I taking it as PEP..post exposure…very upset about that..not sure if the person lied to me about all to create drama. Id rather be cautious than die tho. And I am a hypochondriac anyway. so I’m taking it..I have 1 kidney and im scared of these drugs

  13. Prep is dumb, don’t want aids wear a condom, remember boys, aids is a virus and a virus can adapt to any drug. Look at the recent Ebola outbreak.
    Dumb ass ppl think prep will let them bb without complications.

    1. I don’t understand the doom and gloom about PrEP, which is the first major breakthrough in the fight against HIV for decades, and is being universally embraced by the scientific and medical community.

      “Wear a condom” is great advice — if you can do it 100% of the time. They’re good protection against HIV, and reduce the risk of some other STDs too. BUT very few people manage to keep up perfect condom use.

      If just telling people “wear a condom” worked, the HIV epidemic would have ended decades ago. But there are still 40,000+ new HIV infections in the US every year. Something new is needed — and shouting “use a condom” even louder isn’t that something.

      Some facts:

      * HIV infections in London are down by 40% over the last year, since widespread takeup of PrEP began. They’re at an all-time low in San Francisco, where about 20% of gay men are taking PrEP.
      * The CDC projects that with improved access to PrEP and treatment, we could see new HIV infections in the US drop by 70% by 2020.
      * The World Health Organization recommends that all men who have sex with men should consider whether PrEP might be right for them.
      * PrEP is a cornerstone of the White House National AIDS Policy and of state/city HIV prevention efforts from New York to Atlanta to San Francisco.
      * As far as side effects go, PrEP is considered safer than aspirin.

      Yes, viruses adapt. And we innovate to keep up. Humans are always in an arms race with microbes. That’s the nature of life on this planet. (Thanks for mentioning Ebola: a new vaccine was just developed. It was announced a few days ago. It works beautifully). Already new formulations of PrEP are under development. No one is seriously worried about this. Leave the science to the scientists — they got this.

      (This site won’t let me include Web links, but you can Google any of these facts to find the original sources).

    2. If all you’ve used is condoms, statistically you should contract HIV from 30 different men after you’ve had sex with 100 hiv+ men (in any order, could be number 1, could be number 70.) PrEP is an important fight against the spread of HIV, please educate yourself. But I agree, only dumb asses use PrEP as an excuse to BB, everyone should use both condoms AND PrEP if they’re having sex with multiple partners, or a partner who has sex with multiple partners. It doesn’t defend against any other STI or STD.

      1. Calling people “dumb asses” rarely convinces them to change their behavior. The reality is that a lot of people were already having sex without condoms before PrEP came along. It’s a vast improvement if some of those people get on PrEP.

        The PrEP regimen includes quarterly testing for STIs/STDs. Detecting them quickly and treating them minimizes their spread.

        Besides, condoms are far from 100% protection against STIs other than HIV, so everyone who is sexually active needs to be tested regularly. Too often people who use condoms have a false sense of security about this.

        Of course we need to continue to remind people about condom use, but haranguing and insulting doesn’t work. There’s a reason why there have consistently about 40,000 new HIV cases in the US every year, despite countless condom campaigns. PrEP and TasP (treatment as prevention — ensuring that people with HIV get meds that make them incapable of transmission) are finally making a dent in that stubborn number.

  14. I too am experiencing a lot of side effects. I am more than a little alarmed that there is very little information available beyond “the benefits” of taking PrEP. In fact, there is a considerable amount of PrEP shaming within our community and even in the responses on here.

    I was heavily pressured to take PrEP through the NP whom I see for my primary care. I was new to this city, and because of that obviously a new patient to this medical practice. I made an appointment for a hearing problem but the first thing out of the NPs mouth was PrEP and I couldn’t proceed without agreeing to take a prescription for it (or so it felt). I am tested regularly for a host of things, but the side effects have worn me down, I am tired of being tired and sick all of the time and I am ready to stop taking it after ~1 year.

    In many ways part of its effectiveness for me in preventing potential infection is because I do not want to have sex because I don’t feel well!

  15. Truvada does have side effects, but its worth it if you don’t have the bad side effects to protect against HIV. It does have useful purpose. Personally, I’ve had to deal with severe diarrhea on Truvada. It didn’t appear for 6 months, however, so the problem is that side effects are not always present immediately. While my liver function is normal, my pancreas is just fine, and I have no outstanding issues other than diarrhea, its still enough to make me consider stop taking it. I’ve found eating yogurt every morning can keep it from happening, but I also don’t know that I want to be on a yogurt regiment the rest of my life. Sorry to hear of your billing nightmare, here in Canada there are no deductibles or copays or premiums, so I hate hearing that you had to deal with a billing nightmare and insurance denials. I’ve come to understand the best thing would be ultimately if a vaccine can be found, because taking drugs your entire life is never optimal, whether to prevent or to treat. I still hold out hope for a vaccine and we seem to have forgotten how important a cure for HIV is, because its still a nasty disease.

  16. I took this for about 8 years. I experienced severe fatigue, pancreas issues including 1 suspected bout of pancreatitis and an enlargement of the pancreatic bile duct. Weight gain, stomach bloating, it felt like I swallowed a basketball, stomach cramping and the feeling of my intestines being twisted and squeezed. My doc stopped the truvada finally after learning that I now have kidney disease and switched me to the new formulation called Descovy. Within 4 days my energy has returned in abundance. The basketball has vanished. I took it because I have HIV. Do not take this for PreP. Use a condom. You will be much safer, since someone already contracted HIV while on prep. If this drug could kill the virus, wouldn’t we be cured? Instead, you have a false sense of security while damaging your internal organs and making Big Pharma richer in the process. Best of luck to all who fall for Truvada will keep you safe. Let me know how your kidneys are doing in a few years if you do take it….

    1. Lisa, I’m sorry to hear about your bad experience and glad Descovy is working better for you. Descovy has not been approved for PrEP, only for HIV treatment. In any case, people being treated for HIV are taking more meds than just Truvada, so their experience isn’t directly relevant to PrEP users.

      A few responses to your comments:

      “Use a condom.” That’s great advice, but obviously it’s not working. We have been telling people to use condoms for 30 years, but there are still 50,000 new HIV infections in the US every year. If that message really worked, we would have ended HIV decades ago. Something new was needed, and it isn’t just shouting louder about condoms.

      “You will be much safer, since someone already contracted HIV while on prep.” Yep, there’s been ONE failure among more than 40,000 people on PrEP. It is well over 99% effective. That’s a phenomenal track record. No medication or vaccine is 100% effective, but 100% minus 1 does not equal 0.

      Condoms are not 100% effective, either. They can break, and more importantly, people don’t always use them. Very few people manage to use them, correctly, every single time.

      “If this drug could kill the virus, wouldn’t we be cured?” That makes no sense. Truvada as PrEP prevents infection. No one ever said it was a cure. Just as your HIV treatment isn’t a “cure.”

      “…while damaging your internal organs…” Stories of damage to internal organs are grossly exaggerated. PrEP users are monitored regularly for effects on the kidneys. Very few people (less than 1%) experience an adverse effect. When they stop the drug, the effect is almost invariably reversed, and most can then re-start.

      The research considers PrEP as safe as aspirin: http://www.upi.com/Health_News/2016/01/20/HIV-PrEP-drug-Truvada-as-safe-as-aspirin-study-finds/7021453299698/

      “…making Big Pharma richer in the process.”
      If Big Pharma was really the evil conspiracy you believe it to be, they would prefer no one to use PrEP, because they make a lot more from people getting infected and needing lifetime treatment.

      I hope no one considering PrEP will make decisions based on the complaints of a handful of anonymous Internet posters. There are isolated horror stories about any medication or procedure. If you went by them, no one would ever get treated for anything.

      1. While there is a relatively small number of people whose bodies do not tolerate this medication (as is the case for most drugs) and need to rely on other means, it is clear that PrEP is having a profound influence on reducing HIV transmission. In Denmark, for example, treatment as prevention (increased rates of testing, early diagnosis, access to medication and care) looks set to almost eliminate transmission of HIV. And access to PrEP is an important part of such a public health strategy. Just take a look at the news reports:

        http://www.aidsmap.com/Denmark-shows-first-clear-evidence-of-the-success-of-treatment-as-prevention-in-gay-men-in-a-high-income-country/page/3057494/

        Any ongoing medication should be commenced only under medical supervision and ceased if the side effects are too severe. But given the success and its contribution to ending an epidemic, a widespread anti-Truvada campaign on the basis of a few people with possible side effects is as unhelpful as the anti-vaccination campaign without scientific back-up that is being pushed by some misinformed parents.

        1. The drugs in Truvada have been in widespread use for well over a decade and have proven very safe. There is no evidence to back up your “one year” figure.

      2. You are clueless!!! Wait and see what comes of PreP … try a brand new strain.. hmmm let’s call it HIV type 3!
        This is just the beginning… Pharma. isn’t stupid!

        1. You can fearmonger all you like. Scientists are well aware of the issue of resistance — they don’t need some random guy on the Internet to teach them. They have taken it into consideration, and the consensus is that any small risk of resistance posed by PrEP is more than made up for by the benefits of reduced HIV infection.

          This is about science, not superstition.

          See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4371769/
          https://www.ncbi.nlm.nih.gov/pubmed/26633640

        2. You can fearmonger all you like. Scientists are well aware of the issue of resistance — they don’t need some random guy on the Internet to teach them. They have taken it into consideration, and the consensus is that any small risk of resistance posed by PrEP is more than made up for by the benefits of reduced HIV infection.

          This is about science, not superstition.

          See:
          1. “Should we fear resistance from tenofovir/emtricitabine preexposure prophylaxis?” Current Opinon in HIV and AIDS, Jan. 2016
          2. “Weighing the Risk of Drug Resistance With the Benefits of HIV Preexposure Prophylaxis,” Journal of Infectious Diseaes, Jan. 2015

    2. you are a idiot lisa. truvada does not kill hiv. does not claim to. one more ignorant person online spreading misinformation. you (a woman) have been on prep for 8yrs? even before it was being used ? sure you were. you will be safer to use a condom ? that advice is just scientifically false.

  17. I have been taking Truvada for approximately 5 months and other then loose bowel movements I am perfectly fine. Reading huge lists of possible side effects is not healthy especially if you are prone to “if you read it you will get it”. Being proactive about our health is important but keep things in perspective, posting those huge lists of side effects probably reduces the likely hood of lawsuits in a land where everyone is looking for someone to sue. If you say you can suffer from anything or everything and you still take it you were informed.
    I have days I am tired or sore or have a headache but that is life and there are tons of causes, let’s get a grip and not jump to blame a medication.

      1. Is your doctor monitoring your kidney function? I encourage you to read the package insert for this drug. I believe it to be similar to the Stribild insert, which recommends regular testing for kidney stress. Please note Lisa’s comment below; unfortunately, her experience is not unique. The people allegedly dying of AIDS these days are actually dying of KIDNEY FAILURE.

        1. What evidence do you have for your claim? The people “dying of AIDS” are dying of any number of opportunistic infections. Effective treatment of HIV with today’s medications means practically no one has to “die of AIDS.”

          1. DW is not an idiot! S/he is just seeking attention as s/he is a lonely, bored and neglected “spirit”…
            God help you “DW”…

  18. Im on it now as a preventive because I was raped. Its making me so sick and my stomach has been burning I thought it was just giving me an ulcer or something because they have me on isentress too. This article was the only REAL experience I could find thanks. Also to the above comment if you put yourself at a higher risk why not protect yourself? … Your a dick bro

    1. I’m on it for the same reasons, I take mine with food during or just after my evening meal and u have had no issues at all.

      1. Kacy, I second what David says about the PrEP Facts Facebook article. This blog is far from the only real experience. There are many thousands, including people who have dealt with (and overcome) side effects — and far more who experienced no problems at all.

        Please check out the group. It’s a closed Facebook group — you can participate workout your other Facebook friends seeing anything.

    2. Kacy I’m very sorry you had that experience. What is given as a preventative after a rape or accidental exposure is called PEP (post-exposure prophylaxis) as opposed to PrEP (pre-exposure prophylaxis). PEP usually includes more drugs than PrEP (like you, many people on PEP also take Isentress). That can mean more serious side effects. Most people on PrEP have no side effects at all, or if they do they rarely last more than a few weeks.

      After you finish your course of PEP, you can transition to PrEP if you want to be protected long-term. Usually this involves no additional side effects.

      1. Ii started a relationship with somebody with a positive HIV status, and so I started taking OrEP as an additional precaution.
        I was pooping myself at the thought of it, and whilst for the first week I was easily exhausted, 3 months on, the only side effect I have is more farting than I used to.
        Small price to pay for some piece of mind though.

    3. You’re ‘on it’ because you have not educated yourself enough to know that you are BEING POISONED and the only winners in this situation are the pharmaceutical companies that make BILLIONS of dollars every year off of people’s fear arising from lack of information. Anyone who is afraid of HIV/AIDS needs to read “Inventing the AIDS Virus” immediately. The whole thing is a farce; it’s the greatest scientific and medical fraud of all time. Tens of thousands are 20 or more years on from receiving the bogus and harmless HIV diagnosis, are ARV drug free, and are JUST FINE. Mind you a healthy lifestyle is key here: no street drugs (including poppers), avoiding behaviors that warrant treatment for recurrent STDs (antibiotic abuse), proper rest/nutrition/exercise, and the rest of what we know to be part of a healthy lifestyle. Start researching, folks . . . you’ve been duped.

        1. Jonathan: Alfred is an HIV denialist. This is a species of conspiracy theorist that refuses to accept the vast body of research and experience about HIV — the extremely well documented cause of AIDS — and to lie to people about the scientifically proven effectiveness of HIV treatments.

          What started as a crackpot theory by one discredited researcher, Peter Duesberg, has morphed into a cult that is impervious to facts.

          It’s particularly tragic that this delusion continues to persist, because its proponents have a nasty habit of dying of AIDS.

          See:

          http://www.vice.com/en_uk/read/aids-denialism-is-a-killer-syndrome

          https://www.theguardian.com/science/blog/2012/feb/21/death-denial-hiv-aids

          http://www.thebody.com/content/art57918.html

        2. Jonathan: Alfred is an HIV denialist. This is a species of conspiracy theorist that refuses to accept the vast body of research and experience about HIV — the extremely well documented cause of AIDS — and to lie to people about the scientifically proven effectiveness of HIV treatments.

          What started as a crackpot theory by one discredited researcher, Peter Duesberg, has morphed into a cult that is impervious to facts.

          It’s particularly tragic that this delusion continues to persist, because its proponents have a nasty habit of dying of AIDS.

          (Google or Wikipedia “HIV denialism” for more)

      1. Alfred von Auersperg will also tell you the Holocaust was a hoax. I have personally seen many people die of AIDS. They were HIV positive. They had immunodeficiencies and became fatally ill. His comments here are extremely irresponsible. That being said, PreP is a powerful drug not to be taken lightly. Those at the highest risk should consider it.

    4. you are not on prep . you are on pep for post exposure after being raped. another post of someone uninformed giving advice .

  19. What idiot is perfectly healthy and decides to take a drug with potentially very nasty side-effects (any drug for that matter) to combat a non existent retrovirus and then blame someone else when it all goes tits up? ffs, grow up.

    1. Well put, Kevin. I’m beginning to lose patience with gullible gays who don’t put some legwork into researching the real history of the HIV=AIDS hypothesis. If only these people knew that the the test they took does not detect the presence or absence of a virus . . .

      1. There are conspiracy theories of every sort out there. You can Google whatever you like and convince yourself that the world is being run by lizard people. Or you can stick with credible sources including the legitimate scientific and medical consensus that shows that, indeed, HIV causes AIDS and that successfully suppressing the virus allows people to live healthy lives. Many of the most prominent HIV denialists are dead. Don’t follow their foolish example.

    2. My husband of 30 years decide to play the field as we were together anyway 20 years ago he contracted aids i decided to stay with him a divorce wasn’t a choice because we just bought a house and had a food and liqour store plus a child. How i found out he had aids is like this i said we need to get that ins if one spouse passes the house will get paided. So ins did a blood test and thats how we found out he was positive and i was negative we had are daughter before he got infected. So here we are 20 years later his liver is gone and he has stage 4 kidney disease. The doctor thought the Trivia caused his body to break down. He spent 3 weeks in hosiptal. His hobgoblin were low so he had to have blood. He home now but its a day by day situation. His body cant make blood platelets so now he has to have injections of Empogen to build up his platelets. His stomach fills up with fluids because of his liver and kidney diseases. Its very heartbreaking to see when a person breaks down. God Bless and be safe.

      1. Nancy, that is heartbreaking. I am very sorry to hear this happened to your husband.

        Truvada as PrEP (to help keep HIV-negative people from contracting HIV) is a different matter from its use in people with HIV, who will always be taking additional medications besides Truvada, and who face additional effects of the virus itself. Thus cases like your husband’s, while tragic, have no particular bearing on anyone’s decision to consider PrEP.

        Indeed, given the challenges HIV can pose, it’s all the more reason to take every precaution against infection, whether that’s condoms, PrEP or both — what works best is different for each individual.

        1. PrEP is just another case where Big Pharma wants you to pay out the nose for something that will help one thing but cause another (and if you’re having safe sex, you don’t need it at all). Truvada can help prevent HIV, but so can condoms, “pulling out”, and making sure no one has open cuts for the virus to pass into. Taking Truvada is a real gamble because not only can it destroy your kidneys and/or liver, but if you forget and skip a lot of doses it, like other HIV meds, can stop working altogether. You will be paying tons for something that you don’t even know has stopped doing its job.

          1. Pulling out? I sincerely hope you’re not using that as a n HIV prevention method because it’s very misguided.

            You are repeating a lot of scary stuff about PrEP that is not based in facts. Of course it’s not a miracle — nothing is, even condoms (they fail too, a lot more often than PrEP). It’s one more prevention tool that people can choose if it works best for them.

            We’ve been preaching about condoms for 40 years. If they were enough the epidemic would be over by now.

          2. Sorry the ignorance of theae comments is staggering . tired of hearing “safe sex” only being used to describe sex with condoms. Prep is 99% effective against hiv compared to 85% for condoms. how is that safer than Prep? it has to be taken every day consistently ? ya. like every other drug, if you don’t take it right it doesn’t work. side effects? sure. but go read the list of side effects for vitamin c. its scary.
            people love to judge. why on earth would women take the birth control pill when they could just use condoms and avoid any aide effects ? it’s the same thing. weigh the risks and make a decision. the writers allergic reaction to dilauded and an unusual aide effects to truvada should not be used to share people away. even the title of a $12,000 Bill is misleading, since he only received a bill for $600 he says himself. he says if you are having sex with lots of partners (brian kinney) or your partner is his positive , then by all means take it. well….that is what it is for. if you aren’t at risk the it’s not for you. simple as that. but any straight person that wants to tell a gay man to just use condoms every time or he’s irresponsible, doesn’t have to look any further than their twice or themselves on birth control. Whaley not just
            use condoms? or pull out and risk life changing consequences. sorry the ignorance or this board is overwhelming

    3. OMG, what a sunty reply! You have no idea how this drug is being marketed-reall, I just think that in general that you have no idea and are the one that is the idiot.

      1. Kevin is worse than an idiot — he is dangerously deluded. He is an HIV denialist. They claim the virus doesn’t exist and that AIDS is caused by random other crap like poppers. Never mind that in the 20+ years since we’ve been effectively treating HIV, whose existence is very well documented, deaths from AIDS have plummeted to a tiny fraction of what they were.

        Except for the HIV denialists. They tend to die.

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