My name is Andrea and I developed the first signs of urticaria pigmentosa at about the age of 24 and I am now 43. I stopped going to see my consultant some years ago as it was simply a case of saying “Hello, keep taking the antihistamines and see you in 12 months time”. I have had PUVA treatment but again that was some years ago and it did help in relieving the itching somewhat. I have however been suffering from more symptoms over the last 18 months or so and it is only through looking at articles on the internet that I have wondered whether this condition is now progressing further. Obviously the place to go would be back to the hospital which I do plan to do. I was wondering whether anyone could tell me before I wait on such an appointment whether the new symptoms I have been having are an indication of progression to the systemic form (something I didn’t know about until I looked on the internet). In particular I find that I am unable to tolerate certain foods and drugs because they cause severe heartburn-type symptoms. In fact I thought I might have had to go to hospital whilst on holiday in the USA last year when I took Alka-Seltzer not realising it contained aspirin. I suffered extreme effects, couldn’t swallow, had pain in the chest and into the back that stopped me from taking deep breaths (yawning was impossible!) and developed a prominent bulge underneath my ribs on the left side. It took about 10 days to get back to normal but was quite frightening. In addition certain foods and drugs cause the urticaria to itch, flush and develop wheals. I never used to have this effect so have obviously developed sensitivity in the last few years. I have always been told by my GP that it is indigestion, possibly hiatus hernia. But I wonder how much my GP knows about this condition!? Nobody has ever warned me that this could be a result of this disorder. Can anyone tell me whether this is an indication of systemic involvement?
It would be nice to know how others cope with the condition. Previously I have just had to beware of changes in temperature and drip dry after a bath so that I don’t rub the skin with a towel. Visually I find my skin pretty horrible – I started with a few spots on the belly but am pretty much covered now. My legs are particularly bad, especially the thighs. My belly and back are covered, my chest covered and this is where most of the flushing shows. I even have them on my feet, neck and a few on my face. I would love to be able to bare myself in the summer but can no longer do this or go swimming as I feel so self conscious – and yes people do stare. A recent stay in hospital led to one nurse asking if I had measles! It’s all so depressing. It would be nice to speak to someone who knows what it is like!
[urticaria pigmentosa, UP, skin spots, food intolerance, drug intolerance, UV treatment, reaction to temperature change, adult]