Question
I have severe side effects after 6 months on efavirenz
5 January 2016. Related: All topics, CD4 and viral load, Changing treatment, Side effects.
I am experiencing severe psychological side effects (depression, anxiety, mania, disturbed sleep) from what I believe to be the efavirenz (Sustiva) component of my Atripla.
I have been taking Atripla for six months and this is my first antiretroviral treatment regimen.
Should I simply switch to another HIV drug?
or
Should I consider some sort of psychopharmaceutical treatment like an SSRI? Another drug in my body would be a secondary resort.
And against the advice of most allopathic doctors, I am considering also withdrawing from all ARV treatment to see for myself what happens to my quality of life (the abstract CD4 and VL numbers have proved irrelevant to it), as it has been compromised by these medications.
Answer
Thanks for your question.
For anyone with significant side effects to efavirenz it is easiest and best to switching to another combination. Switching is especially improtant for you as these side effects are severe.
Six months is too long to have put up with this.
Even though most people find the side effects reduce after a few weeks, it is time to realise that efavirenz just isn’t for you.
A page about efavirenz side effects from the i-Base guide to side effects.
Changing treatment is likely to quickly improves quality of life. You should notice this within a week or so.
The only other HIV drug that has this type of side effect is rilpivirine. If you are on your first combination, you have plenty of other choices.
The choice of options you can switch to is something to talk to your doctor about first.
See: What are the alternatives to efavirenz?
Your quality of life should improve and your CD4 count will still increase.
- i-Base guide to changing treatment may also help.
- Please call the i-Base phoneline if you want to talk someone about this.
This answer was updated in January 2016 from a question first posted on 16 May 2007.
Hi Sibongile,
The dizziness could be a side effect of efavirenz. Is your daughter taking this HIV med? If so, she could ask the doctor if there other HIV meds that would be easier to take.
What does the doctor say?
Please let us know results for viral load and CD4 count, if you have access to them.
My daughter take an HIV tablets it about 2 months now but she still feel dizzie she drink 21hr at night but she feel dizzie until 13hr afternoon the following day
Hi Sani, Mild side effects from HIV meds can go away within a week or two. But if these continue, or they are severe, you can ask to change treatment and switch from efavirenz.
I take efavirenz, after one week, felling unbalanced, feeling tiredness and cannot concentrate which have severe effect my quality of life. How many days after to recover my normal body ? N can I recover my balance after 1 month, if not n how days it will be ?? Should I replace another drug ?
Hi Harsha,
It’s normal to experience side effects of dizziness and mood changes when you start taking efavirenz. For most people this improves after the first few weeks on treatment. Making sure that you take efavirenz in the evening (an hour or two before bed) can make these side effect milder, as can leaving two hours between eating and taking efavirenz.
If these side effects do continue, get worse or if you find them very difficult it is important to discuss this with your doctor or healthcare worker. Around 1 in 5 people stop taking efavirenz because of side effects and this should be easy to do.
Its been 15days i am on efivirenz, my major problem is i am facing alot of giddiness… nausea its just like i have lost my balance… and yess i am feeling low as well as weak.. whats my major concern is will all this be permanent as it has really affected my normal life and i feel so disabled!!
Hi Eddy, thanks – 12 months is much too long to put up with the symptoms.
As with the original post, if someone has problems with efavirenz and things don’t start getting better after a few weeks, it is probably best to change to another drug.
Using Zopiclone or other sleeping pills for a short period may help get you into a pattern of sleep that doesn’t involve these dreams, and that breaking your current pattern may be important in terms of re-training your synapses again. This could be something to discuss with your doctor.
I just want to add that I began my treatment with a regimen including efavirenz and although I needed to stop using it after 12 months, I am still, two years later, experiencing ‘brain damage’ as a result of it.
‘Brain damage’ may sound like a strong claim, but it is the correct term. In a small number of people efavirenz has dreadful psychological effects. I had extraordinarily horrific dreams. These woke me up nightly and left me in such a terrified state, pumped full of adrenalin, that I could not sleep for the rest of the night! This sleeplessness, night after night, caused a constantly returning thought of suicide. The rest of the time I was very bad-tempered, unhappy, and anxious.
Thankfully, with encouragement from someone at i-Base and HIV-positive people on other sites, I confronted my doctor so strongly that he finally took me seriously enough to change me to another drug.
HOWEVER, two years later I KNOW that my brain synapses are still not back to behaving normally! I am still having the most extraordinary dreams, night after night. They are usually horrible and they usually wake me, but at least I do not waken any more in the state of terror I used to when taking efavirenz. This is why I know I am suffering brain damage. My whole imaginative faculty has been tampered with by that wretched drug. I have horrible dreams every night and I never have a thoroughly good night sleep now unless I take a Zopiclone (mild sleeping tablet) before bed, and, of course, I generally try to avoid those – as I am loading enough toxic drugs into my system already!
So my advice to anyone about to begin taking efavirenz is this: you may be like most people and have no psychological side-effects, but if you DO get severe side effects then DON’T accept any advice to persevere because the effects may well disappear after about 12 months. My case is evidence that the effects may NOT disappear after 12 months’ of use and, furthermore, even if then, after 12 months, you finally change to another drug there is a likelihood that Efavirenz will have permanently damaged your neural network, as it has mine.
On the one hand this drug helps keep us alive, but on the other hand it can make that life so poor in quality that it doesn’t seem worth BEING alive.
Eddy
I also stopped taking Sustiva + Combivir as my first line treatment as the side effects after one year and a half were still problematic for me.
I felt semi functional in the mornings, drugged, and when the medication began to take affect at night, I felt like I was on narcotics and was very disoriented. This did not change and I also had a revival of problems with asthma particularly at night . I would not recommend it for anyone with asthma on medication like ventolyn or bricanyl, as it causes extreme giddiness and intoxication . Very distressing. I also developed peripheral neuropathy but only in my hands and fingers.
I opted to take a treatment break for now. I have stopped all meds for 9 months and I am well. My CD4 is 270 and my VL is less than 3,000 approx.