I was diagnosed with Urticaria Pigmentosa in 1983 and things remained calm for most of the time except if I was in the sun, or having a hot shower. I was covered in Pigment marks on most of my body and limbs but not my face. This was till around 8 years ago and things changed.
I am now 60. While swimming in Cyprus in very cold water my airways swelled, lips and face, and I know now this was the start of many serious anaphylactic-type masto attacks. I had to inject adrenaline on many occasions and was admitted to hospital several times. I also have severe bone pain, flushing, headaches, struggling to breathe and at times angioedema.
I was two years like this before I eventually got a knowledgeable Haematologist who had treated a lady previously with Masto and he was able to put it all together. He did Bone Marrow Aspirations, Skin Biopsy and Tryptase and other tests. Systemic Masto was diagnosed. I was on around 20 different drugs daily including Nalcrom but nothing seemed to make much difference. He decided to try Interferon. I have now been injecting Interferon on a daily basis for almost eight years and I am virtually free of attacks. Also within a year of starting Interferon all of the pigment marks which covered my body for many years have disappeared. Seemingly they are dampened down by the Interferon.
At the beginning of Interferon treatment I lost a lot of my hair and it felt as though I had the flu all the time, back pain and headaches but now injecting the Interferon is just part of life and the symptoms at the beginning have stopped.
I still have to be careful and steer clear of known triggers, no anti-inflammatory drugs, codeine and many others. I was bitten by a jelly fish and had a huge reaction and very severe anaphylaxis so obviously I steer clear of these too. I also have Neutropenia – low white cell count. This means I am prone to infections and have had shingles and cellulitis several times.
[urticaria pigmentosa, skin spots UP, systemic mastocytosis, anaphylaxis, bone marrow biopsy, skin biopsy, tryptase, interferon, bone pain, flushing, neutropenia, drug intolerance, reaction to jelly fish, adult]