Julian’s Story

My name is Julian, born in 1967 in Brussels, Belgium, but British by passport and heart, and leading a peripatetic life ever since. I consider myself one of the luckier ones of this group – I “only” have UP, a mild slightly annoying itching which is triggered if I take too much of any of the usual culprits – tomatoes, nuts, alcohol, seafood, etc. This first appeared, now that I think back on it, in my teens in the mid-80’s – I would itch after showering. At the time, I blamed it on the hard water in my hometown of Ramsgate, Kent. I was first officially diagnosed in Singapore in 2001, after my then-girlfriend queried the red spots which had begun to appear. I had thought they were heat rash, which she assured me they were definitely not. So off to the doctor I went.

After an extended diagnosis process (the skin specialist I saw had only ever seen 3 cases in his 16 year career, 2 of them in children, and it eventually took a biopsy to remove all doubt), I was prescribed cetirizine, one pill every 2-3 days, and masto continued to have a minimal effect on my life. I am a member of the UK Masto support group, and help out on the Mastopedia group.

Cetirizine did however make me wonder – before starting to take it, I only itched after showering, and cooling off was enough to solve the problem. Once I started taking it, I would itch continuously at a fairly distracting level if I did not pop my next cetirizine. At the suggestion of a member of the UK group, I started taking half-pills of cetirizine (I simply cut them in half). The result was the same, and my cetirizine lasted twice as long – a saving which my émigré Scots blood loved.

Then I received another, rather more radical suggestion – that cetirizine was in fact part of the problem, it was encouraging the itching, and that I should switch to loratadine to wean myself off the cetirizine and eventually also the loratadine. I was of course warned to be VERY careful – and I would advise anyone reading this to do likewise, especially if you react to triggers worse than I do – I was warned to go back to the cetirizine at the first signs of trouble. Anyway, I switched to loratadine, and found it to act more slowly than cetirizine (it presumably releases into the system more slowly), but that when I did not take my next loratadine, I no longer started to itch. So after a couple of weeks, I stopped taking the loratadine – and that was that. I have remained drug-free for the last eight months now: I still start itching mildly if I take too much of a trigger, but it is back to the condition it was before – definitely manageable, and it goes away if left alone…

I cannot however emphasise enough once again that as you will probably know by now, this illness affects different people in different ways – be very careful if you want to try this. That said, it certainly worked for me.

[urticaria pigmentosa, UP, skin spots, cetirizine, loratadine, food intolerance, alcohol intolerance, adult]