I was initially diagnosed with UP [urticaria pigmentosa] in 1987 at the age of 42. We had been on a hot holiday to Greece and I had rashes on my legs that did not disappear. My GP referred me to a dermatologist, who gave the diagnosis of UP after a biopsy of one of the spots confirmed a Darius sign. She also sent me for a full body x-ray. My local surgery at the time asked me to go to one of their evening teaching clinics so that they could learn about how to diagnose this condition. Nothing was offered in the way of treatment and I was discharged with the understanding that nothing could be done about it, it was something I just had to live with.
I put all this to the back of my mind as I was working full time with two growing children and my husband’s mother lived with us as well. I continued to have odd symptoms such as I couldn’t sit on grass with bare legs as I itched terribly and I couldn’t tolerate certain air–fresheners, perfume or nickel. Then one day I woke up feeling hot and flushed. I had an important day at work and so just got up and got on with it but gradually felt more unwell as the day went on. At lunchtime I took some Nurofen [ibuprofen], met my husband later after work to do the food shop and complained about my NHS ID badge on a chain which had brought me out in weals round my neck. I got to bed later but felt terribly sick at about midnight and must have passed out in the bathroom. My husband found me unconscious at about 1.30am and I was taken to A&E, not coming round fully until about 6am. I stayed on a high dependency ward for 5 days and no-one could find the cause of my collapse. When I got home I started looking up things on the web and found there was a lot more about UP than before, and I made contact with the Mastocytosis Group which has been so supportive and helpful. My GP immediately referred me to a hospital when I showed him the information I had discovered. Once there I had a bone marrow biopsy, a DEXA scan, tryptase tests and prescriptions for antihistamines and epipens.
We moved house and I was transferred to another hospital for annual monitoring. I have only had one more episode since and both my husband and I recognised the symptoms – exactly the same as before, a slow build up from feeling hot and flushed in the morning to vomiting and diarrhoea in the evening. As my symptoms are fairly stable, I have started to go to my GP for annual tryptase tests etc and it seems to have worked OK. Both the dermatologist and my GP have advised me that I can be referred back if tryptase levels rise or I have any concerns.
[urticaria pigmentosa, UP, skin biopsy, bone marrow biopsy, tryptase, drug intolerance, reaction to odours, DEXA scan, flushing, gastrointestinal symptoms, adult]