I am Hilary, aged 58. I believe my UP began to appear around the year 2000, though it took four years and three different GPs before referral to a dermatologist who made the diagnosis in 2004. I hadn’t realised that the lumps that were coming up when I was in bed, after a shower or seemingly spontaneously were connected with the reddish spots. My poor cat got the blame at first and I apologise to her for all the flea drops! I now have the rash pretty much all over my body other than the palms of my hands and only a few on my face. I have the largest number on my trunk and thighs.
Following the first diagnosis I researched, as most of us do now, and realised that my myriad of other symptoms could be connected with the rash too (overwhelming fatigue, nausea, diarrhoea, itching, muscle and joint pain, flu-like aches and more) but the consultant said this was not possible. At this time I found the Masto-Med list and was advised that I quite likely had Systemic Mastocytosis and a UK support group had just been started. I believe I was the 19th member.
More research and I discovered a specific doctor and persuaded my GP to seek a referral to him at a hospital in London. Through him and his referring me to Haematology for a bone marrow biopsy, I was diagnosed with Systemic Mastocytosis as suspected and so began my long history with this condition.
My known triggers for reactions are exercise, heat and cold, friction, stress, alcohol, some foods and medications. I tried a low histamine diet but this did not help and my consultant reckons I produce too much histamine myself for this to make any difference. I take a lot of medications that I would rather not have to but these keep me as stable as possible; these include antihistamines, mast cell stabilisers, steroids, paracetamol as the only pain relief I can take, proton pump inhibitor, calcium/ vitamin D, monthly B12 injections, and bladder medications. I was trialled on a new drug, Midostaurin, on a compassionate basis and at first there was a great response when my tryptase fell from the 50’s to 9 and my rash almost disappeared, but I had increasing nausea and vomiting and the symptoms started to return so I had to stop. My tryptase went back up, this time to over 100, and my rash came back with a vengeance too.
I have had four anaphylactic episodes so I am no longer afraid to use my epi pens as I know how much they help.
I have a very supportive team at the hospitals I attend, including a clinical psychologist who listens to my moans, and the pain clinic who have given me a TENS machine to help with the neurological pains in my limbs. I will be embarking on an outpatient INPUT course soon to help me with coping mechanisms and they have already provided me with a mindfulness course that has proved very helpful.
I have not been able to work since 2006 but have got used to this and see the positives as much as possible. I can spend time with my grandchildren and appreciate the smaller things that often pass us by when rushing to work.
[urticaria pigmentosa, UP, skin spots, systemic mastocytosis, anaphylaxis, fatigue, gastrointestinal symptoms, joint pain, reaction to temperature change, food intolerance, alcohol intolerance, adult]