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Until recently, I have believed that my HIV treatment had been quite kind and lenient towards me, experiencing minimal or no adverse side effects. I couldn’t have been more wrong.

atriplaUntil recently, I have believed that any symptoms primarily caused by beginning HIV treatment have been quite kind and lenient towards me, experiencing minimal or no adverse side effects in the first few weeks encouraged me to build a strong, resilient trust in my medication, that it would be tolerable in the long haul, and that I am one of the envied fortunate, who seem to be able to adapt to taking ATRIPLA with ease – barely noticing anything different in my everyday social life and personal characteristics. It appears now that I couldn’t be more wrong, and it saddens me to admit that I really shouldn’t have made such a quick, personal judgement concerning this lifelong treatment and the unexplainable debilitating effects it can have, both physically and more concerning in my case, mentally.

Efavirenz; is one of the three chemical components in the daily combination drug ‘ATRIPLA’. Notorious for its high anti-HIV potency and usually well tolerability among us HIV patients, but also its vicious psychiatric side effects, commonly experienced on a somewhat ‘mild’ level for those who take it, usually within the first few weeks of treatment with the drug. Common mild forms of these adverse effects are: vivid or obscure dreams, trouble sleeping and dizziness; all of which I experienced mildly in the first week or so, before vanishing all together. The majority of these ‘very common’ effects I expected to encounter, didn’t even cross my path in the slightest, I didn’t have any form of rash or prolonged insomnia that over half of patients briefly experience, leaving me understandably hopeful, thankful and optimistic for my future with ATRIPLA as a symptom-free convenient treatment option.

In the last two weeks, I have seen these symptoms spike from almost non-existent, to beyond my physical and mental control, and it seems to be getting worse. As I have held such faith in my medication after the first few weeks of ease, I have since written off these symptoms as other issues with my life, “I am feeling down because of the weather”, “ I am feeling tired because I should have had more sleep last night” and “I am feeling agitated because I have no money”. Until yesterday I didn’t even think (or completely notice) that these things are the result of Efavirenz.

Upon yesterday’s reflection, it seems the past few weeks have shown me:

Physically: huge increase in daily diarrhoea, weakness and fatigue. Skin discolouration on my feet is also now clearly visible.

Mentally: I cannot concentrate on anything (including this blog post); I cannot read, write or spell with much fluency anymore. I am confused; my brain is often frozen and stumped with simple thought processes of basic tasks and decisions. I have been feeling very anxious and paranoid concerning those around me – leading me to spend more time alone and suspecting family members of being ‘against’ me. A huge change in my emotions; I have now noticed how much I have been crying recently, over reasons I cannot remember nor explain. Feeling agitated; the smallest worries in life now seem like huge and frustrating obligations. Memory problems; memorizing anything, whether it be college tasks, dates, or my weekly schedule now seem extremely difficult without the use of technology.

Now for the side effects that are worrying me and my family. Depression; Beyond anything else I have experienced, A general feeling of hopelessness and failure is now a daily struggle. Suicidal thoughts; becoming more frequent by the day, the overwhelming urge to hang myself or take all of my HIV medication, and then some, is now a common uncontrollable thought that consumes me every time I allow myself to freely think, Usually before I go to sleep or when I feel like I’ve done something wrong. And finally, the most recent: Aggressive/Psychosis-like behaviour.

Yesterday I was kicked out of my home to stay with my Grandparents for a while. It seems that I became so infatuated with anger and disturbing violent thoughts towards the breakdown of a seven year friendship some months ago; I went into a form of inexcusable and unprovoked rage against my younger brother (16). He was taken to the A&E department of City hospital within the hour, having his scalp glued back together. Without going into too much detail (as I’m now fighting back the tears in my college library) I have now realised that I am not currently mentally stable, not coping with life and completely unable to control my mental health.

The most vivid dream I have experienced yet occurred last night; being tied up and witnessing the rape of my mother. Let’s just say it took a while to get out of bed. The emotions of shock, disgust and self-fear have consumed me all day, as well as the overwhelming guilt concerning what I have done to my baby brother.

Shaking as I write this…I am asking you all to look at this with an open mind. I am not looking for approval nor sympathy, I have decided to share this to express my feelings and experiences of utter horror with what Efavirenz has done to me, and too warn other HIV positive people of the effects that can happen, effects that I foolishly underestimated. I will be seeing my doctor for an emergency appointment as soon as I can to discuss changing my medication regimen.

Your eccedentesiast friend,

Luke (@PositiveLuke on twitter)

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36 COMMENTS

    • So sorry to hear about your experience. Started on Atripla 3 months ago and have had rashes and other unpleasant side effects. Thanks to you and others on this site I am more informed and hope my new treatment regime improves things. Thanks for sharing your story and hope things improve for you. Paul x

  1. I think this is probably the worst atripla reaction I’ve heard of and it confirms a belief that I’ve held for some time now, namely that it’s time to put efavirenz in the salvage therapy cupboard, to be used only when there is absolutely no option, and even then under close supervision.

    Luke, I’m so sorry you’re going through this after such a promising start. I hope your doctor can sort out a viable prescription for you as soon as possible, and that you can recognise that it wasn’t really you who did these things: it was the drug.

  2. Luke I’m very sorry to hear about this. It’s extraordinarily brave to share this with the world, and I hope you are put on a regimen which isn’t so damaging to you psychologically and physically. Always at the other end of a Twitter line for support, if needed.

  3. Luke, there’s not much to add to what has been said, other than to wish you the best, hope that having noticed the problems and decided to take action, you will be able to turn a corner and get your life back, and to thank you for your bravery in writing so openly about all of this.

  4. do not pass go. go straight to your HIV doctor.

    you need a barrel load of help and cuddles. you must seek help.

  5. Luke, sorry to hear you had such a worrying time on Atripla.

    I started on it in summer 2012, and after a couple of weeks of dizziness/digestive/skin problems I thought it had settled down. 6 weeks or so into the treatment, I experienced a rapid progression from random low moods (lasting from a few minutes to a whole day) to panic attacks, paranoia and hallucinations.

    Atripla suits the NHS for all sorts of reasons, but it is far from suitable for a significant proportion of patients. Thank you for being so brave and honest, and by doing so to helping shed light on this.

  6. Sorry to hear that Atripla didn’t work out. I too had a bad experience with it, though not to the extremes that you suffered. The truth about Atripla is that it’s an incredibly good drug at rapid viral suppression, and I guess that’s why it’s still prescribed and recommended so highly as a first-line option.

    But so many people simply don’t take well to it, personally I found that I had a few fairly good days, then began feeling the effects; day-by-day I felt like I was becoming weaker and less able to find the energy to get through the day, the drunkenness feeling became more intense to the point that I could hardly walk in a straight line or construct a sentence. However, my partner is currently on Atripla and has suffered little to no side-effects at all.

    I’ve now switched to a new combination – Ritonavir, Darunavir, and Truvava. I’m feeling great! The psychological effects of Efavirenz seem to vary wildly from person to person, but the good news is that it’s really not a big deal to switch to another combination. And you wouldn’t be alone, lots of people try Atripla as a first option and find that it’s not suitable for them. The most important thing is that you’re able to live your life and feel like YOU are in control of that life, rather than constantly battling to control the effects of a behaviour-altering drug which was designed to improve your life and simply isn’t a good fit for you.

    I hope you’re feeling better soon and can begin to put this horrible mess behind you.

  7. Hi Luke,

    I’m not going to offer sympathy or empathy, because I’ve not experienced anything like this. I’m fortunate to be HIV- but suffer from a degenerative neurological condition and the side effects I experience from my medication are decidedly mild. However what I do offer is a sincere, heart-felt regret and heartache that any person should have to go through what you’re going through. I hate to see anybody in pain, but it’s particularly frustrating when it is somebody as genuine, nice and caring as you.

    Even now, whilst feeling the way you do, you’re writing to express yourself and to tell, warn if you like, people of your experience. I know I don’t know you. I know the chances of this post (and subsequent offer) will likely have little impact on you right now. But you are truly inspirational for having kept yourself through this and should you ever want to talk, rant, moan, cry, laugh, joke, scream or insult (with) anybody, feel free to e-mail.

    I have nothing but respect for you Luke, indeed everyone living with HIV. Especially you and Tom and the other writers on here, because you choose to speak out, and of, your experiences.

    I wish you well and that your change of medications abates these horrific side effects as quickly as possible.

    Stay strong,

    JP

  8. Luke like everyone so sorry to hear how this medication has had such a severe reaction on you, like everyone, says its not your fault for the way you have found yourself behaving in this manner but rather the cause of the medication .

    It was very brave of you to put this on here for all to read and to understand how this medication has effect you in such a horrid and harsh way, as said its not your doing but rather the medications, Im sure others have suffered in this manner to by this particular medication .

    I hope they sort it for you ASP you must feel awful just now, and I do hope as I do and the as others on here do everyone can plainly see its not you but the medication, my heart goes out to you as this must be so devastating for you right now for what its done you and caused .

    As said on here they can change the mediation and get you back to you so dont blame yourself in anyway, just keep in mind its not you it was the med

    Hope to hear soon that your doing better and meds changed for you soon as take care.

    Lots of love an hugs to you

    JohnPaul
    .

  9. Luke, I had a very similar problem when I took Atripla for almost a year. I changed my medication and felt like a completely different person very quickly. I now take a combination of ritonavir, darunavir and tenofovir and I much happier in myself. Fact is, there are alternative combinations for you that don’t contain efavirenz; to which you obviously have very bad mental side effects. Atripla seems to be the most “convenient” for those starting treatment so this is often the default medication that is prescribed. Come off it immediately and let us all know how you get on!!

  10. I know you didn’t ask for sympathy, but I have a lot for you anyway. I’ve had similar reactions from psychiatric medication but I only have the first clue of how hard it must be. I hope you can get different medication and that things will work themselves out. My thoughts are with you.

  11. Your post brought me close to tears. I’m so sorry that it is not working out for you, but from what people more knowledgable than me are saying there is light at the end of the tunnel. Lean on your support network and forgive yourself for actions that are not your fault.
    X

  12. So sorry to hear of the struggles your going through.
    Today I bulldozed my way into my gu clinic after discovery of a rash yest that spread overnight.
    Looking at what your going through seems my dark thoughts also may be atripla related.

    Always willing to chat. Hugs

  13. Hey Luke….atripla did almost the same thing to me,but worse…I was taking atripla for 5years…well it saved me from doing from aids in 2008,my t cell count was at 99 ……..it went up quickly w atripla but all of the other side effects..plopping..they were horrible………………look..I stopped taking atripla as of September 12,2013…I have a really good dr..she’s the best.if I might say so….I love her..we have a really good patient&Dr. Relationship.anyway…she switched me to taking…REYATAZ,NORVIR&TRUVADA..ITS BEEN 2months and I’m feeling really good..not moody.no nightmares etc…no confusion.no sadness..none of that…I promise u..this hub MED cocktail is really good….you can even take the meds while you are out and about during the day etc..just make sure u eat something before taking as they will make u a lol nauseated..but there’s a pill called PROMETHAZINE.it’s for nausea.ask if dr…make a list on paper about what u need from your dr…so u don’t forget..it helps me all the time….tell DR. Everything..I wish u the best.my name is Romulo Fernandez,Jr..my email is fernandez_romulo@yahoo.com…take care.please let me know how u r doing..I’m very concerned about what’s going on..I have a good heart..nice guy..lol…

  14. I hope you search for another drug therapy. In every case of suicide where the was an autopsy done, there were chemical imbalances found in the brain….which means we are clearly not in our right mind at the time of the decision to take ones own life. Please consider getting off this drug. You are an inspiration, living with HIV, try your best not to forget that and never give up looking for a better treatment.

  15. Hi Luke,

    That must have taken a lot of guts to write that and I really respect you for it – it can’t have been easy. If you’re worried about your mental health over the weekend or you’re continuing to feel suicidal, there’s always A&E as an option. They all have psychiatric teams with access to doctors if you need it.

    All the very best,

    Nick.

  16. Hi, as an HIV professional, I have read your story with sadness and interest. Thank you for sharing it as it will undoubtedly help others. Atripla is a great drug and works well for the majority of people. However if you are unlucky enough to suffer these side effects, which are well documented, you need to consider switching to something else. In your case Luke, I cannot advise you strongly enough to seek help from your HIV team ASAP, if they are open today, go today..if not, do you have a specialist nurse who you can call? You could even take yourself to A &E if you felt suicidal or like doing harm to others. Please see someone as soon as you can so you can be switched to treatment that is more suitable before it’s too late.
    Good luck and take care

  17. Sorry to hear this but alas this is only too common a tale. For many years, if you have been a patient you are aware of the large anecdotal evidence that many people have a negative impact on mental health with Sustiva (efavirez). Anecdotal evidence though isn’t enough for the “powers that be” and the medical professions position was underlined with the “evidence based medicine approach” this simply means what has been studied and peer reviewed. It seems that after many years information is coming out in this form to support your experience and that of others. I note that when asked in 1999 about what medications I needed to take (had the six months to live situation) I was adamant, given advice from friends, to avoid efavirez, and opted for Nevirapine. Fortunately I have been on Nevirapine since and it has worked well even though I have experienced some treatment breaks. Fatigue is related to therapy but not just one particular medication alas. It is also very poorly treated within the NHS if it becomes too severe. Great you have posted this and I apologise for any spelling mistakes.

  18. Luke, this sounds very much like lactic acidosis, which is a common side-effect of various NRTI/NNRTI drugs, and can be very serious! You need to seek medical attention as soons as possible!

    https://en.wikipedia.org/wiki/Lactic_acidosis

    It is very likely that you’ve had a build-up of lactic acid happening since you started taking the medication, and it’s only just reached the level where it is starting to affect you. Lactic Acidosis is a vicious chain-reaction that takes a long time to build, but then escalates quickly.

  19. Luke, like most people have said your actions were due to the debilitating side effects of this effaveranz within the drug. This drug caused me to go into a full episode of psychosis while I was under the supervision on a phyc ward. My recollection of this time was very similar to aggressive and paranoid delusions.

    I can say I do know how you feel. I do offer empathy without contempt. Like another commentor I changed my med to duruniver ritonovir and truvada. This has helped.

    I hope you find the strength and have confidence to ask about alternative regimes.

    It’s your body! Take knowledge from many sources before decisions are made for you xx sending courage and strength to you and your family.

  20. Luke, if you’re feeling up to it, could you let us know how things are going. I’ve been worried about you since I first read your article. I really hope things are looking better for you. If you don’t feel up to writing, drop Tom an email so he can pass on news of your progress…

  21. It took three years for my body to get used to Atripla. I had every side effects (physical not mental) Luke has mentioned and a few more.

    I strangely just woke up one morning in 2011 and they’d just gone (except form the occasional bout of diarrhea), strangely my partner had no side effects whatsoever?

  22. Hi Luke, to say that I feel for you is an understatement. I am going through exactly what you are going through. I have been on Atripla since 2011. I have had 360 degree mental behavioral change and that has impacted on the physical and emotional.

    I am changing doctors end of this month. I hope you are ok. This is very hard. Unfortunately I cannot express myself the way I want to as I now have zero attention skills. Hang in there.

  23. well this was very heart felt. Needless to say I understand all that you are going through as I am taking Atripilia as well. I have been taking it since 2008 and have experienced alot of the things in which you have spoken off. I wish you the best man as with time it gets better

  24. I was on atripla for five years,it caused bad side effects,nightmares,mood swings,anger,physicale side effects..etc..u name it.i expienced it..FORTUNATELY,IM NOW TAKING..REYATAZ,NORVIR&TRUVAD..AND DOING SOO MUCH BETTER..NO MOOD SWINGS,WAYYYY LESS DREAMS,ETC…LUKE..U NEED TO TALK WITH YOUR DOCTOR TO GET U ON A ANTIDEPRESSANT &ANXIETY PILLS..THE HIV MEDS WE TAKE R VERY TOXIC AND CAUSE MANY PROBLEMS THAT ONLY US WHO R DEALING W HIV AIDS KNOW WHAT WE HAVE TO DEAL WITH..ALS..GET A SUPPORT GROUP..YOUR MENTAL HEALTH IS CRUCIAL..IM TELLIN U BECAUSE I KNOW..PLEASE..TAKE CARE..ACT UP!!FIGHT BACK!FIGHT AIDS!!IT GETS BETTER IF YO HAVE A STRATEGY&LEARN WHAT YOUR BODY TELLS U,TELL YOUR DR.EVERYTHING.BE HONEST W DR…THEY CANT HELP U,IF U DNT TELL THEM WHAT YOUR GOING THROUGH..DONT GIVE UP..

    • hi Romulo
      I just thought I would email you as from your posting you have been on atripla for 5 years and had to come off because of all the side effects. I have been on atripla for 9 years and have just come off it because of all the side effects, like you said (you name it I have had it)nightmairs/mood swings/anger/physical/ well the list is crazy, I have been off atripla for 9 days now the first 6 days I had no sleep now my sleep has started to come back, can I ask you if you felt any withdrawl systems coming of atripla ???I can tell you that my head feels a lot clearer!!!! did your side effects take awhile to calm down after you stopped atripla ?? any information of what you went through would help as having to deal with the side effects of atripla can be a lonely place, thanks rob.

  25. Sorry to hear the problems you went through with atripla, I have been on atripla 9 years the first drug regiment I was started on and i have had to change, as the side effects took over my life, dreams/mood changes / depression/rashes/consentration lapses, I would be having a conversation with some one then I suddenly had to stop cause the words would disappear from my head then I would have to wait 10 seconds for the words to come back!!!!very scary!!! The sudden mood changes were horrible one minute I would be feeling ok the next like a dark cloud had just flown over me,very hard to act normal when your feeling like death inside, the thing is I had no reason to feel like that, but when you feel like that for no reason then it’s hard to control all most like your fighting a battle inside and having to smile on the outside while trying to look normal,then I started to have fit’s, I had about five in one year a couple in my sleep I always new because I would bite my tounge and wake up in a second and be totally awake with a splitting head ache that I would have for the rest of the day,,the two fits I had through the day I was hospitalised, ,as the fits happened in front of friends,,, ,that’s when I new I had to get of atripla,as the mental feelings and panic attacks and feeling of just having no energy or intrest got to much, and the out breaks of anger which is totally unjustifiable and totally not me, the fact is I excepted the fact that I had hiv many years before and no matter how angry at my self or life I got I new it would not change anything !!!! So I always thought that I will just take my meds and live life as normal, but atripla made it very hard for me to be happy because of the constant mental battles and physical feelings I was expriencing!!!! I thought my mind and body are going haywire !!!!very hard to live your normal life when you feel like all these mental and physical systems are battering you on a daily basis, I was scared to change my medications because for 9 years my viral was undetectable and my cd4 has been around 600.so these tablets do work, but the side effect can be crazy, I have had so many side effects that its just not possible to list them all ive started on new meds now I am going into my second week on the new meds and for the first week I could not even sleep for a week !!!crazy I know and I am sure it’s more to do with coming off atripla,I’ve never spent a week awake not being able to sleep and the thoughts are not good thoughts,and the feelings going round my body are crazy,tingling numb feet and hands that come on and off 20 times a day !!!! But at least I am now in my second week and my sleep has started to come back, thank god!!! And my mind feels clearer then it has for years, all I want to say is stay positive even when your mind is telling you different having to live with hiv is hard enough but having to live with the medication side effects can be much harder, don’t be afraid to start on new medication, I was all ways afraid because I thought it was one less option that it would leave me,and what about the new meds coming with new side effects of there own, the thing is you need your mind to be strong when you have hiv,and one of the ingredients in atripla realy does play with your mind,I wish you all the strength in the future, and I dont care what anyone says it’s not easy living with hiv,but at least we can live now !!!!so we might as well just get on with it best way we can, sending my love and respect to all you people that are struggling on the meds,don’t let this struggle destroy you, change your meds as there is better options x

  26. I’ve been on atripla for a week, with a cd4 count of 6. Suffer all the effects especially the nightmares which at times seem to blur with reality and mess me up completely. Have also noticed I’ve become a lot more aggressive. Took my mother for lunch the other day and some guy said something on the street, usually I’d have ignored it. If it wasn’t for my mother stopping me I would have killed him. I’m not me anymore, everything about me mentally has changed. Then to deal with the depression and shame of it is never ending. Having attempted suicide numerous times in the past, not in the last 2 years, I live in constant fear.

    • Jarred, please go back to your HIV doctor and asked to be moved to another medication (one not containing Efavirenz) as someone who’s attempted suicide you should never have been prescribed it in the first place.

      • Hi Tom, unfortunately I live in South Africa, we don’t have many options, was on another type, can’t remember the name, which I was taken off of as they nearly killed me because my body rejected it completely. They are also extremely expensive here and medical aids won’t take me due to my advanced stage and drastically low cd4 count.

  27. Hi Luke

    You are not on your own. I have been taking atripla now for about 4 years and i thought i was doing so good and being so healthy but i wasnt. I started becoming a lonely person. Being sad for no reason. Not being able to concetrate, having my brain in full activity over things that i shouldnt worry about. Till the day i had a meltdown and i thought so seriously to end up my life. That day i got really scared and i went to my doctor who took me out of atripla straight away and explained that it could be the cause of depression and they way i feel. I have only been out of atripla 2 days and im still strugling but i see and end of it now. I hope you get though it and im sure you will.

    Best of luck and remember you are not alone.

  28. I have a experienced the same sign effects and it took me nearly 7 years to realize it was sign effects. It has been a update in the meds in I have a appointment coming soon to talk about switching to another form of the meds without the ingredient that costs most of the sign effects. Hoping everything works out for the best.

  29. Luke,

    I seriously cannot thank you enough for this article. I thought I was going crazy. I thought I was crying over the state of the country due to recent election results. I thought it was because of weather, its been raining 4 days now. I also thought I was just losing my mind. Where I have never had suicidal thoughts, now I sit and plan my demise out, I dream about it. I almost quit my job because I thought my boss hated me. (Ive been one of the hardest workers where i am for 2 years). I started Atripla this July after a diagnoses in June, and while initially the side effects of dizziness and diarrhea were unbearable, they soon went away. I actually enjoyed the vivid dreams. Now I am being chased by serial killers wearing the faces of my best friends. What saddens me even more is, my ex boyfriend took Atripla and had all these side effects and I dismissed them as him being crazy which led to our break up 2 years ago. I feel awful about not understanding what he was going through now. At least now I know trhat its not me going crazy, its quite possibly this medication. I’ll be calling my doctor right now to discuss other options. Im glad at least that I did not give into the thought of hurting myself. Im just glad I’m not alone. Thank you so much for this article. You may have saved a life.

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