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Efavirenz Side Effects Include Suicide Risk; It Could Have Been Me

October 28, 2016

Matt Ebert

Matt Ebert (Credit: Selfie by Matt Ebert)

Suicide can be prevented if people get help. Call the U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255).

Every year come the reports about efavirenz (Sustiva, Stocrin), downwind from a time I will never forget. They are reminders of something I have known for over a decade: Side effects from this drug can include suicide, with clearly elevated rates in those who have concurrent mental illness or who use street drugs.

I was on efavirenz for years. Within six months of dropping the drug altogether, I normalized. For the first time in years, I was not flooded with suicidal thoughts, addictions and crippling mental health woes. During the worst years of my life, I met several men on Atripla (efavirenz/tenofovir/FTC) who would go on to commit suicide or overdose. I could easily have been one of them.


Crossing the Blood/Brain Barrier

Back in 2002, I was living in Los Angeles and my doctor and I decided to try efavirenz under the brand-name Sustiva. Sustiva had entered the market earlier with great fanfare because it was considered good at crossing the blood/brain barrier.

Prior to efavirenz, reservoirs of HIV in the brain had been thought to be harder to target or destroy. My doctor described it to me this way: Pools of virus kept me from becoming "undetectable." Crossing the blood/brain barrier might bring me a treatment breakthrough. And for this, he suggested Sustiva.

Once we added Sustiva to my regimen, I was undetectable within two weeks. But I now had sleepless nights and bad dreams -- sleeping hallucinations might be a more appropriate description. I've heard that in places such as South Africa, efavirenz is crushed up and smoked as a street drug whoonga, a hallucinogenic crack. At 600 mg every night, the effect on me was instantaneous: Efavirenz was bashing 5-HT (2a) receptors in my brain like an AIDS acid-trip.

At my doctor's request, I kept a dream journal. In less than three months I filled it and sought another. But something more sinister was underway. I was sleepless, depressed and losing my will to live.

It started with a quick uptick in depression and drug abuse. I had always been susceptible to drug and alcohol addiction. By early 2003, nearly eight years sober from a heroin problem, I started smoking more pot, drinking whiskey straight and taking sleeping pills and clonazepam for anxiety. Benzodiazepines and eventually opioids followed. I was on a slow-burning path towards death.


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Don't Rock the Viral Suppression Boat

I complained about all this to my doctor: the addictive behavior, nightmares, sleep disorder, crippling depression and constant thoughts of snuffing myself out in ever more violent ways. The response was always the same: The dreams will pass; get some rest; it gets better. But it never did.

When I had achieved viral suppression, I was told not to rock the boat. Then, as now, the theory was that if something worked, you shouldn't change the regimen. What if no other antiretroviral treatment worked? Worse, what if I became resistant to the one drug, efavirenz, that was working?

By 2002, we had reached a point in history when HIV was finally considered a manageable illness. We should all feel lucky, right? Wrong. I felt anything but lucky. I was consumed by addiction. My bipolar mind was swinging over a great chasm. If my mood swings before efavirenz were mild to moderate, once I started taking it, my moods were swinging over the English Channel.

Worse, overwhelming thoughts of suicide engulfed me every day. I couldn't stop obsessing, and I couldn't talk about it either. We don't live in a culture that tolerates suicide, so talking about suicide is rarely an option until it's too late. I couldn't walk over a bridge, or pass a gun shop, or sit too long in a parked car, or look at all those pills in my medicine chest without thinking: I should just kill myself and get it over with.


Hospitals, Rehabs, Jail Cells and That Rainbow Afghan

From 2003 to 2005, I tried. I overdosed nine times.

I would awake in an emergency room with a red bracelet on my wrist and my body strapped to a gurney. They would revive me with briny water, wheel my carcass to an elevator and dump my bones into a mandated stay in a psychiatric ward for days, sometimes weeks. I was institutionalized, on and off, for the better part of two years, and I blamed everything but efavirenz.

I went to several rehabs too. After 30 or 60 or 90 days, I would be released to the streets, stagger around less than a day, then drug up and overdose all over again. When I was thrown out of sober apartments and group houses with the speed and sound of a phalanx of slamming doors, and when I wasn't hospitalized or incarcerated, I was living out of my car.

One day, after scribbling in my dream journal, I put my diary on the roof of my station wagon and drove off the I-5 freeway. I flipped, and when the cops arrived, my wagon was so loaded with pills, pot, efavirenz and booze they screwed me to a jail cell seat for a week. I sat, vomited and witnessed my own weeklong hallucinogenic detox. I can tell you, in the Twin Toweres Correctional Facility -- one of the county jails of Los Angeles -- no one got meds. I should have been grateful: It was the only place in Los Angeles that I couldn't get efavirenz.

Once on the outside, I ended up in a shooting gallery. There was blood on the walls, there was chipped lead paint and a rotting, foul smelling, faded rainbow-colored Afghan strung across the main room like a makeshift gay pride wall. Young men, now strung out on meth -- once virile, now viral --could bring tricks or johns home to party and play.

The sunlight through the windows burned spots on our faces; ultraviolet rays pushed through the empty crocheted spaces as through a sieve and stained our skin like lesions of Kaposi sarcomas. In this environment men still loved. Desperate hearts still beat in every corner. Most had HIV or what we then called full-blown AIDS, and all of us were addicted. Antiretrovirals were still being served nightly, same as crystal meth and tar heroin.

I one awoke from a three-day blackout barefoot in east Hollywood. Sunburned and dehydrated, I had no idea where Tuesday, Wednesday and Thursday had gone. I had been on my way out of jail on Monday, heading toward my umpteenth sober living house, and when I awoke -- staring at my dirty bare feet and coming to as if off an anesthetic -- it was Friday.

Closer to death, nearing the end, starving and calloused, stripped of any identification or resources, stripped of shoes and shirt, I climbed out of that week by panhandling for change on Santa Monica Boulevard. I didn't get far. I was picked up and sent back to jail for loitering. I was debris, swept up like so much dead dust.

One night, out of nowhere -- I do not know where I got the strength -- I wrote on the bedroom wall I shared with four other "sober" junkies, "I Refuse." The next day, the man who rented me the room blew his head off with a shotgun. I found him out back among the raised red rose bushes. I have erased much of what I saw that day, but that "POP" was a sound I will never forget -- that pop changed everything.


I Refuse

"I Refuse" became a kind of mantra. I refuse to take your drugs. I refuse to go out like a chump. I refuse to die a withering addict. I refuse another day in hell, rehab or jail. As with so many others, I thought my problem was addiction. I now believe the root cause was the side effects of efavirenz. I had no will to live and a mind stuck in a suicidal groove.

The proper term is central nervous system (CNS) toxicity. Today, CNS toxicity is the number one reason people stop taking efavirenz.

I started making "I Refuse" bracelets in occupational therapy and handing them out to any patient who wanted one. Soon after, I refused my efavirenz. In fact, I stopped all my HIV medications somewhere in 2004. I was so suicidal that it felt like a death from AIDS would come as a relief.

Years later, my best friend, also on an efavirenz cocktail, would toss his meds into a trash can and do just that -- he died of AIDS in 2013. Many men who could not tolerate this drug gave up and died.

So when I tell you that, for some of us taking efavirenz, a death from AIDS was a relief from the effects we were suffering, you should now know what I mean. By now, you should be asking yourself how you feel about what you are taking. You should be asking what your friends are taking too.

In 2004, I was committed to a long-term drug treatment facility. It was not fancy. It was the opposite. There was a chain-link fence 20 feet high roped around the dorm to keep me from running in front of a city bus. There were no shoelaces, no razors and no windows to open. When the Santa Ana winds blew hot dirt onto the ball yard, you could see it and sometimes taste it -- but you could never experience it in your hair.

During this time, efavirenz was rebranded as part of an all-in-one combination pill and Atripla was born. As a tradeoff for entry into the drug treatment facility, I had to commit to taking Atripla daily. So, I white-knuckled it. I was still suicidal, but I was sober. And gradually, off hard drugs, things got better -- but they never got right.

Even sober, I never stopped thinking or worrying about suicide until years later -- until I got off efavirenz for good in 2008. Within six months after stopping it, I was no longer flooded with suicidal thoughts, active mental health struggles or addiction.

A recent report says that there were elevated rates of suicide or self-harm in those on efavirenz in the massive START study -- particularly among those previously diagnosed with mental health conditions.

Yet, I have never seen a label read, "Side effects include suicide." September was Suicide Prevention Month in the U.S., and October features the Day of the Dead. As of last year, efavirenz is no longer recommended as first-line therapy in the U.S. Perhaps it's time to abandon this drug altogether.


Suicide can be prevented if people get help. Here are guidelines from reportingonsuicide.org:

If someone you know exhibits warning signs of suicide:

  • Do not leave the person alone
  • Remove any firearms, alcohol, drugs or sharp objects that could be used in a suicide attempt
  • Call the U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255)
  • Take the person to an emergency room or seek help from a medical or mental health professional

Warning signs of suicide:

  • Talking about wanting to die
  • Looking for a way to kill oneself
  • Talking about feeling hopeless or having no purpose
  • Talking about feeling trapped or in unbearable pain
  • Talking about being a burden to others
  • Increasing the use of alcohol or drugs
  • Acting anxious, agitated or recklessly
  • Sleeping too little or too much
  • Withdrawing or feeling isolated
  • Showing rage or talking about seeking revenge
  • Displaying extreme mood swings

The more of these signs a person shows, the greater the risk. Warning signs are associated with suicide but may not be what causes a suicide.

Read Matt's blog, Kick Rocks.

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This article was provided by TheBody.
 

Reader Comments:

Comment by: Jasont (Seattle) Sat., Dec. 24, 2016 at 10:24 am UTC
I took efavirenz for two years and I honestly don't remember anything from that period of my life. But stopping efavirenz didn't make things better, my severe depression is now permanent. I firmly believe that the effects of efavirenz never go away, even after stopping it.
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Comment by: Roy Ferguson (Brookfiled, IL) Sun., Dec. 18, 2016 at 9:11 pm UTC
I am 65 22 years +, I also had the same reactions to Sustiva. Opted to stop taking HIV meds decided that death was better than the side effects. Fired the doctor that didn't listen to my complaints, new doctor, new meds, and I did al right.
The VA finally figured out that maybe Atripla, has Sustiva, was not the best med for HIV+ Veterans with PTSD. or ANY veteran.
Reply to this comment


Comment by: Milo (Manila, Philippines) Tue., Dec. 6, 2016 at 9:04 am UTC
Thank you for sharing your story. I have been on Efavirenz for almost 8 years now. And yes, I share the same sentiments of having sleep disorder and depression. Unfortunately, though, I have to stick with Efavirenz since there are not that as much options in my country as there is in more economically progressive countries.

I think that the sleep disorder, depression and the other side effects involve an interplay of so many things; probably greatly influenced by psychological reasons. It's possible that Efavirenz is aggravating an existing mental concern like depression and bipolar conditions.

In my case, whenever I feel that I'm on "the low", I keep reminding myself that there are things that I still have to do that's why I am still here; that I still have a purpose to be here. Somehow, that keeps me going. As much as I would like to shift to a different ARV regimen, I can't because of the limited options we have here. And trust me, if I could I would take on and try another ARV drug. But for now, Efavirenz is what keeps me undetectable; on the aspect of addressing HIV in my body, Efavirenz works for me.

As for what the doctors say... that "the dreams will pass; get some rest; it gets better", I get that all the time, as well.

We'll have to make do with what we have until such time that we have the luxury of options and privileges and hopefully the cure.
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Comment by: Cliff (Cincinnati) Tue., Nov. 8, 2016 at 10:53 pm UTC
I hear you! I dropped Atripla in 2013, best thing I ever did. I was deeply depressed and lethargic for four years while on it. I never regret stopping it. Now, I'm on Complera, which is much better. Glad you're better!
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Comment by: MarkA (Louisiana) Sun., Nov. 6, 2016 at 7:44 am UTC
Been on Sustiva for 8 years. No issues. This research needs to go further. I have no suicidal tendencies. Are these people suicidal to start with? Are they depressed? Do they hate have an incurable disease?

I'm happy with life and don't care about being undetectable. My sex life has changed but we all adapt. It's a life thing.

Be true to yourself. Accept who you are. Get on with it. Don't be a victim. Be a voice. A voice against the anguish you spread.

I have HIV, it doesn't have me. I am too strong.
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Comment by: Nigel Priestley (Boca Raton, Florida) Fri., Nov. 4, 2016 at 11:55 pm UTC
Thank you for sharing, with heart wrenching honesty, your journey here on earth. If there is a better place when we leave here you certainly deserve to be there.......
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Comment by: Pierre (Montreal) Thu., Nov. 3, 2016 at 6:37 pm UTC
Thanks for your story; it gives me the idea that I should probably stop Sustiva. In 2003 nothing worked for me because of all side effect (I have been poz since 1980, diagnosed in 1985) Then came Atazanavir which I agreed to take with Norvir and SUstiva, and became undetectable and have been since... but having nightmare, and dark ideas sine 2003. Everytime I discuss with my doctor we both agree that if it works don't fix it. You give me the desire to improve my life by finding a new regiment which should be easy now with all the new drugs. Thanks.
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Comment by: Cory (Birmingham, England) Wed., Nov. 2, 2016 at 6:10 am UTC
Me too. "I complained about all this to my doctor: the addictive behavior, nightmares, sleep disorder, crippling depression and constant thoughts of snuffing myself out in ever more violent ways. The response was always the same: The dreams will pass; get some rest; it gets better. But it never did."

I had to raise hell before my doctor listened and changed my meds. And this was in the UK in 2006, in exactly the same caring system that we have still.

Thanks for this account. I went through hell but now I realize some others experienced much much worse on Sustiva.
Reply to this comment


Comment by: Freddy (San Francisco) Sat., Oct. 29, 2016 at 8:42 pm UTC
The writer is fortunate to have realized the bad effects he experienced from Efavirenz, but he also succumbs to a problem that is unfortunately typical among many long timers with HIV. That is, he projects his experience onto everyone, suggesting that Efavirenz should be banned because of his experience, and that of some acquaintances of his. I have taken this drug for about thirteen years and did experience some sleeping problems at first, but those have been gone for many years. I may switch to another regimen at some point, but it won't be because of suicidal desires, which I've never experienced. I've been quite pleased with the drug overall. I also have never taken recreational drugs, nor have I had the kind of mental issues the writer describes, so he may be more susceptible to Efavirenz than others. I get so tired of being told that my reality with HIV is such-and-such a way because some old timer wants to lament his troubles and would seemingly like to think that everyone is in the same boat; what he describes is simply not my experience. Share your experience, yes, but please do not project it onto others to try to increase the validity of your argument.
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Replies to this comment:
Comment by: Roy (Brookfield) Sun., Dec. 18, 2016 at 9:14 pm UTC
Should we give Sustiva or Atripla to HIV+ Veterans with PTSD?


Comment by: jeton ademaj (Harlem, NYC) Fri., Oct. 28, 2016 at 8:32 pm UTC
I was on Sustiva for four months of continuously dreary and vomitous inebriation, and the extremely vivid dreams and nightmares were actually a perverse relief from the dull daytime haze I dubbed "the Grey Psychedelia".

My hubby began on this for many years before I convinced him to switch to Complete, but he switched back months later because he could no longer get to sleep without the distinctive efavirenz buzz he acclimated to.

It is my firm belief that no one ever really stops getting perceptually and sensorily disrupted by efavirenz...they just adapt to functioning on this powerful, pseudo-hallucinogenic inebriant ARV DRUG.

or not.

In the never-ending interim during which this might be debated, one thing is plain: the drug dosage was maximized beyond what was needed for viral suppression in many or most because the maker had much wiggle room in how they could characterize the buzz so many if the FDA test subjects reported.

When any buzz can be classified several different ways based on subjective questioning, there's certainly no need to document bad buzzes that may be more likely to enable, induce or exacerbate morbid psychological reactions.

They just have to make that ca$h until the body count grows too conspicuous.
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