efavirenz
the good, the bad,and the downright disturbed
Doctors love it because it works so well, but efavirenz still struggles to
shed its reputation for being a drug that messes with our heads
Words Susan Cole
Image Alex Caballero
A
fair few HIV drugs are linked to mental health problems. Abacavir and
AZT are sometimes associated with depression and fatigue. And in very rare
cases abacavir has also been linked to psychosis. However, the antiretroviral
most regularly associated with central nervous system (CNS) side effects
is efavirenz.It may get a lot of flak, but efavirenz, a non-nucleoside reverse
transcriptase inhibitor (NNRTI), is one of the most widely used antiretrovirals
in the UK. And, not without good reason: it is extremely effective. In 60
to 80 per cent of users, viral load cuts to undetectable within six months
of starting. Studies indicate that it is as potent, if not more so, than protease
inhibitors, when taken with two nucleoside reverse transcriptase inhibitors
(NRTIs) such as AZT and 3TC. Another factor in its favour is its low pill
burden; just one pill, once a day without food restrictions. HIV consultants
are so keen on the drug that when starting people on it, they tend not to
dwell too long on telling people how it may affect the CNS.
That said, we can’t get away from the fact that 50 per cent of people
taking efavirenz develop CNS side effects including dizziness, vivid dreams,
impaired concentration, confusion and anxiety within the first few months.
Less frequently, some may experience serious psychiatric side effects including
depression, paranoia, mania and suicidal thoughts.For most, these side effects
happen within the first few weeks and subside over time, but for some the
effects last much longer and severely affect their quality of life. It has
been suggested that for
people who already suffer from anxiety or depression, these symptoms may worsen
with efavirenz.
John started a combo of efavirenz, 3TC and d4T in 1998:
“I found the initial side effects of efavirenz a bit shocking because
although I was really into clubbing, I’d never really taken drugs before.
The first night I took efavirenz, I got up in the night to get a drink of
water and fell flat on my face. I had weird dreams and felt dizzy but soldiered
on. Within a couple of months things calmed down; my CD4 count started to
recover, I went back to work and things seemed OK for about two years. Suddenly
things quickly went downhill. I had a lot of sleep deprivation and felt completely
burnt out. I’d have horrendous, vivid dreams. Soon after I was made
redundant and things got worse. I’d have heightened emotions; if I felt
sad I’d get incredibly sad, if I was happy I’d become so bloody
happy you couldn’t hold me down, and if I got angry... well, let’s
not even go there.
“In April this year I came off efavirenz and switched to nevirapine
and kept a diary for the first few weeks. I’ve noticed that I’m
less depressed, less moody and can rationalise things a lot better. I can
laugh about it now, but at the time, efavirenz did my head in. The drug does
work, but for me the side effects were unbearable.”
Raffaele
Teo (left) started a combo of efavirenz, FTC and tenofovir last year.
He was warned about potential side effects but wasn’t prepared for how
much it would affect his quality of life or how it would jeopardise his long-term
relationship.
“I took my first dose in the evening and awoke the next day with my
head spinning so much I couldn’t walk. It started to get better by the
end of the second week, but I had a hung-over feeling in the mornings. This
went on for seven months and would last until about 3pm. I began to realise
I’d become more withdrawn; I couldn’t stand people. It started
to affect my relationship so badly that my partner and I almost split up.
I had absolutely no motivation. It was gradual but got worse and people around
me began to notice. I knew things were really wrong when I started to get
really paranoid, something I’d never experienced before.
“I coped with the vivid dreams and the hung-over feeling, but it was
affecting my ability to cope with everyday life. I delayed switching for as
long as I could, but eventually I told my doctor. When I switched to nevirapine
it was like a veil being lifted from my life. I stopped having vivid dreams,
feeling depressed and wanting to avoid people. I am normally quite introverted,
but the medication brought out the introverted side of my character so much
more. Within a couple of weeks of switching I felt much better, within a month
it was like coming out of a tunnel. It had been a really scary time for me
and very difficult for the people that cared for me.”
While many people on efavirenz develop CNS side effects, studies show only
three per cent stop taking it because of side effects. For the majority, the
effects are mild to moderate and clearly they find ways to cope.
Stephen
Bitti (above right), started taking efavirenz eight years ago, soon
after it was first made available.
“I experienced mild side effects for the first two weeks; giddiness
and light-headedness. I managed them by taking my medication before I went
to bed, so the side effects kicked in while I was sleeping. The one time I
took it in the morning I felt really strange. Night times weren’t really
a problem, apart from fabulous, lucid dreams. The combination I was on of
efavirenz, 3TC and d4T was very effective. Viral load testing had just become
available and within a month my viral load became undetectable. My CD4 count
remained above 700. Last July I stopped therapy as part of structured treatment
interruption, not because of the efavirenz but because of the side effects
of d4T. I wouldn’t have a moment’s hesitation going back on efavirenz
after my structured treatment interruption.”Fiona continues to use efavirenz
and
has found ways of coping well with the side effects.
“I guess I’m one of the lucky ones. I was recovering from cancer
when I started it and had a virtually non-existent CD4 count, but it soon
started to rise and my viral load was undetectable after three months. I noticed
the strange mental effects and they aren’t pleasant like recreational
drugs; it’s like being stoned and on acid at the same time. The effects
still occur after four years but I deal with them by being asleep; I take
my night-time pills the minute before I go to bed; efavirenz stays in the
body for a long time so you can afford to be a bit flexible. If I’m
not asleep before the effects kick in then I
normally end up taking a sleeping pill, otherwise I have lucid dreams all
night and don’t get a good night’s sleep.”
Self-help tips for coping with the
‘efavirenz effect’
• Take at bedtime, just before sleep
• Avoid disturbing TV programmes or books before bedtime
• Avoid taking with high-fat meals which can increase the amount of
efavirenz absorbed in the blood
• Avoid stimulants like caffeine, alcohol and recreational drugs, particularly
in the evening
• Talk to your doctor about being prescribed anti-depressants and/or
sleeping tablets
• Switch to taking it in the morning if you’re suffering from
insomnia
• Practice relaxation techniques such as meditation, yoga or breathing
exercises
• Maintain an exercise programme
• Keep a journal to notice things that affect your mood
• Do not take it with St John’s Wort as it may reduce the levels
of HIV drugs such as efavirenz
If you are worried about potential side effects of efavirenz or are experiencing
side effects that you find difficult to cope with, talk to your doctor about
your concerns. He or she may offer advice on how to manage the effects, or
can discuss with you your options regarding switching to another combination.
