The Pharmaceutical Journal
Vol 270 No 7251 p765
31 May 2003

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There is no need for patients to feel hopeless about vitiligo

Pharmacists, who are also patients, describe in their own words what it is like to have to take a medicine for life

There is no need for patients to feel hopeless about vitiligo

I first suspected I had vitiligo several years ago, while I was on holiday. As my skin tanned, small patches of skin on my knuckles and neck remained white. It made me think of my mother.

Mum had died some years before. She had vitiligo. She was dark skinned, her father being of Afro-Caribbean origin, and my skin tone was almost identical to hers. Mum had vitiligo on her hands for as long as I can remember. I never gave it a thought that it might have distressed her. To me, it was part of her appearance , so natural that it would have been bizarre had it suddenly resolved. In fact, I cannot even remember if she had it elsewhere on her body; I suppose she must have done. I only remarked on it once, when I was around nine or 10 years of age. I asked her why her hands were turning white, to which she replied that she would love to be just one colour, any colour.

"Even green?", I suggested. "Yes, even green would be better than this," she said. At the time I assumed she was joking because she smiled when she said it. Thinking back, I am now not too sure. She never made any attempt to hide it, although I suppose she used to wear gloves most of the time when going out anywhere. Well, it certainly looked as if it ran in the family.

"I could live with it"

When I returned home after my holiday my tan faded, and my patches became less conspicuous. They did not enlarge over the next few weeks and months, and I thought if this was the extent of the problem, I could live with it. One day in my local, a girl said to me, "Hey, your tan's keeping up well, but it shows up your vitiligo." I was taken aback by this comment. I had banished the problem to the back of my mind as my condition seemed to have stabilised and I was surprised to come across someone familiar with my problem.

"You know about vitiligo?" I asked.

"Yes, I've got it myself," she said, "but you can't tell unless I've been out in the sun. Look at my hands."

She pulled up her sleeve past her wrist and I could see she had patches slightly paler than the rest of her arm.

"I wouldn't have noticed at all," I said.

"I've had it since I was 10," she said. "I never sunbathe any more. I don't like people to know."

From that point, I became more conscious of my own vitiligo and decided I would see if anything could be done about it. The problem had started to progress again. Within a few months there were patches on my legs, under my arms, and around my eyes. I contacted the Vitiligo Society, which suggested that I consult my doctor. My GP referred me to a dermatologist at the hospital where I work, who suggested I try steroid creams for a period. I used a potent cream for a number of months, but had no response and noticed my skin was becoming thinner and was bruising easily. After reviewing my condition, which was worsening despite the steroids, he somewhat reluctantly agreed to treat me with PUVA, which I had for around 18 months. I took four 10mg 8-methoxypsoralen tablets two hours before having about six minutes' UVA therapy in the unit — a kind of four-sided sun-bed which I stood up in. I had two sessions per week.

The patches around my eyes disappeared entirely within the first three months of treatment, and most of the other vitiligo on my face also went during this time. My consultant was as pleased as I was and agreed to continue with PUVA for a longer time. For the next nine months or so, it seemed that nothing else was improving — the patches on my neck, arms and legs, which had now become quite extensive, were not repigmenting and I was becoming itchy after each session. I had practically made my mind up that this was as good as it would get: I might as well be thankful that most of my face had cleared up and I would have to live with the condition elsewhere on my body. My consultant really left it up to me whether I was happy to continue or wanted to call a halt to the treatment. One day, I looked in the mirror and, to my surprise, my forearms, which had been almost completely depigmented were now covered in tiny freckles of pigment. Even the large patches under my arms were also freckled — I had given up hope that they would ever respond and I think my consultant had also.

Three years after stopping PUVA, I have had some minor recurrence of my vitiligo, but the majority of the repigmented areas remain fine. After discussion with my consultant, we have decided to recommence PUVA to arrest any further deterioration and we hope that any recent depigmentation can be reversed.

PUVA risks

I am concerned about the risks of PUVA. There has been much recent discussion in the medical and lay press about the increased incidence of melanoma and other skin cancers in people having received PUVA. The risk seems to depend on the cumulative dose received, so I was pleased to discontinue it as soon as I thought the results were acceptable. A second course of treatment will inevitably add to that risk. The lesson I have learnt is that PUVA must be a long-term treatment if it is likely to be effective. My consultant said that although he had tried PUVA on several patients with vitiligo, I had shown the best response because of my persistence; most of his other patients had dropped out of treatment after a few months.

I must say that if I did not work in the hospital where I received my PUVA, the thought of twice weekly sessions for two years or so would be a considerable inconvenience. It is not easy for others with vitiligo to access PUVA, even if their GP refers them to a sympathetic consultant. Also, not every hospital has a PUVA unit, so treatment may involve travelling. Still, it can work, if you are prepared to put in the time and effort. It also makes you feel so much better thinking that you can do something about your vitiligo — you do not just have to live with it and feel hopeless.