Stevens-Johnson Syndrome feature
BACK FROM THE BRINK
A normally uncomplicated HIV drug-switching exercise left Paulo Ribeiro, 38,
burnt, almost blind, but most definitely unbroken
Can successful HIV treatments create a new set of challenges?
We use drugs to control our viral load and boost our immune system. But sometimes
people living with HIV are forced to focus more on managing drug side effects
than the virus itself.
I am HIV positive and live the reality of sharing my life with the virus.
I have an unpleasant tale about how rare side-effects, caused by HIV drugs,
almost killed me, but did not destroy my will to live, or my love of life.
Everyone has one story. This is mine.
Frozen on a summer’s day
Since childhood I’ve spent a lot of time hanging around hospital
corridors for two reasons: my mother was a nurse and I have had
persistently delicate health. In 1996, however, at the age of 27, the bomb
of a positive HIV diagnosis was dropped on my shoulders.
I’ll never forget sitting in the Kobler Clinic, waiting to see Dr Mark
Nelson for the first time. It was summer but my mind was frozen.
I remember feeling embarrassed and having total disdain for all that was going
on around me. I recall having a glimpse at a copy of PN thinking: “How
can I be positive from now on?”
Over time I became more confident and developed a strong relationship with
my doctor. Positive but happy, I decided to establish residence in the UK.
I didn’t have to start any
combination until 2000. But fate decided to give me two new reactions, rarer,
nastier and more painful than HIV itself.
My original combination included efavirenz. But by October 2002 I was finding
it impossible to cope with the disturbing, vivid dreams. My consultant and
I decided I should switch to nevirapine: a very similar drug, but one that
shouldn’t mess with my central nervous system. Both drugs are widely
used in the UK for first-line treatment and switching from one to the other
is usually straightforward.
At that point I was unaware of Stevens-Johnson syndrome (SJS) and Toxic Epidermal
Necrolysis syndrome (TENS). I
didn’t know the risks. But even if I had been told, I would still have
switched treatment. Cases of SJS and TENS are very rare: they occur in only
three of every thousand patients treated with nevirapine.
Burnt and blind
It started with conjunctivitis at about 4pm on a Sunday, about two weeks after
starting nevirapine. But that night
I woke to find myself covered in a rash. By the time we reached hospital,
the burning and blistering had started.
Symptoms for SJS and TENS are extremely serious these two syndromes burn your
skin tissues from inside out. Some of those burns are third degree. And some
effects are irreversible.
Skin detachment from my body was vast, almost 60 per cent: my dermatology
consultant thought I was going to die. I looked like a deep-fried chicken
wing, covered in
blisters, some bigger than my feet. My lips, nose and cheeks all gathered
together.
Morphine became my best friend. I stayed in hospital for about eight weeks;
transferring between the HIV ward and the burns unit. My partner and friends
were told to expect my death. My eyes were drastically burnt and my corneas
scarred with total perforation on my right eye occurring a few times. I’ve
since undergone several surgical procedures on my eyes: had two corneal transplants
and an
implantation of four amniotic membrane grafts. I have also had the natural
lens of my eyes replaced by artificial ones. I will always have to use hard
contact lenses as
protection and they also help me to see using the left eye. My tear glands
don’t work properly leaving me with severe dry eye syndrome.
I became virtually blind as soon as the reaction occurred and I couldn’t
even cry about it. I couldn’t even open my eyes; they felt like sandpaper
and the creams blurred my vision even more. For months I lived indoors with
the blinds down, unable to cope with light due to an endless eye inflammation
(it lasted for more than 18 months).
I became a prisoner in my own home. I’ve survived against all the odds
but not without lasting effects.
Back on track
I’m alive, and where there’s life, there’s hope. I’ve
chosen to put my health back on track at any cost. Over the last 28 months,
I’ve proved to myself and others that some very bad moments can be reversed.
I have done this through will power, the help of experts and access to a high
technology. I’ve cheated death, recovered all of the skin on my body,
and continue to work hard on my eyes. If you saw me in the street, you would
never guess that I was completely burnt through medication.
But it wasn’t easy slowing my life down from 100mph to almost zero;
sleeping through two consecutive summers;
taking almost 100 tablets a day for months or being on very strong pain killers
and still feeling pain. I am aware the battle is still on but I am up for
the challenge. A near-death
experience and the risk of total blindness taught me quite a bit.
These days I try to be wiser, less expectant and more respectful to others
and myself. I have a dedicated partner, good friends, the best care at Chelsea
and Westminster Hospital and with Mr John Dart and his team at Moorfields
Eye Hospital. My relationship with my HIV consultant has strengthened. The
enormous learning process makes all the work worthwhile. It has reassured
me that I can still be a positive person while being HIV positive. It’s
a matter of choice.
Paulo’s survival guide
• Trust the NHS, it really saves you when you need it…
•…but don’t allow NHS staff to abuse you. Be polite but
firm.
• Develop good communication with your doctors; they know their job
but cannot guess everything.
• Be well informed about your illness and treatments. Make the most
of specialised websites such as www.aidsmap.com
that contain detailed, accurate information.
• Knowing more about illness/treatment will enable you to maximize time
with your consultants avoiding needless questions and tackling important ones.
• Alternative therapies can be of tremendous help.
• A healthy mind can mean a healthy body. Psychological help can boost
your positive frame of mind.
• Understand and respect your body. If it shows signs of
tiredness just rest. Don’t feel guilty.
• For peace of mind, ignore people who say bad things.
• Eat healthily, rest properly and make your own environment a place
of tranquillity.
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The facts on Stevens-Johnson and Toxic Epidermal
Necrolysis syndromes
Stevens-Johnson syndrome (SJS) and Toxic Epidermal Necrolysis syndrome (TENS)
are very rare but severe hypersensitivity reactions reported with nevirapine.
Such reactions occur in less than three in one thousand of people treated
with nevirapine and one in one thousand treated with efavirenz. If a reaction
is suspected and the drug is stopped quickly, there is a greater chance of
reducing the severity of the reaction. Boehringer Ingelheim who manufacture
nevirapine recommend close monitoring for life-threatening skin reactions
during the first 18 weeks of treatment with nevirapine.
There is no way to predict who is likely to get a severe
reaction before taking the drug, but most people who get one do so in the
first six weeks of treatment. Most people on nevirapine say it is among the
most tolerable HIV drugs to take. It generally has few side effects like nausea,
diarrhoea, fatigue, cholesterol rises or central nervous system disturbance.
Similar hypersensitivity reactions have been seen with other drugs widely
used in treating people with HIV including the common antibiotic cotrimoxazole
(Septrin) used to protect against PCP, and other antiretrovirals including
abacavir, efavirenz and T-20 (enfuvirtide).
UK guidelines currently recommend starting with an NNRTI-based combination.
Around 60 per cent of people in the UK currently start with efavirenz and
40 per cent with nevirapine. Detailed information issued when nevirapine was
first approved stressed:
• the importance of starting nevirapine at one 200mg tablet for the
first two weeks to reduce the frequency of rash
• not increasing this dose if there are any signs of a
hypersensitivity reaction, including fever, rash or temperature
•l increasing the dose to 200mg every 12 hours (twice daily) only if
there were no symptoms of a hypersensitivity
reaction or rash
If you are using nevirapine and develop a rash with any of the following symptoms,
call your doctor immediately: ‘flu like’ symptoms, fever, muscle
or joint aches, conjunctivitis, blisters, mouth sores, facial swelling or
tiredness.
Simon Collins, Information Officer, HIBV i-Base
• HIV i-Base produce the Guide to Avoiding and Managing Side Effects,
a free, 44-page publication. Call 020 7407 8488 or check www.i-Base.info.
HIV i-Base also provides a confidential freephone run by HIV positive advocates
providing information on all aspects of HIV and treatment. Call 0808 800 6013,
Mon, Tues and Wed, 12-4pm. Free from UK landlines and mobile using the Orange
network.
