I’m Caroline and would like to fill you in on my history. I’m 59, married, with 2 sons in their 20’s. I was diagnosed with Masto/Urticaria Pigmentosa 17 years ago and by the first consultant. I continued to see him for many years but government cutbacks meant he wasn’t allowed to see dependants any more so I was transferred to the NHS. I feel quite lucky that the dermatologist that I saw until last year (when she changed hospitals) was very good in as much as if I suggested something I had read about she would give it a try. I now see a dermatologist and a Professor of Haematology once a year plus a consultant for my “bones” at least twice a year. (All of them I can see on a SOS basis at any time).
I now have SM [systemic mastocytosis] which has given me asthma; I also have osteoporosis, a slightly enlarged spleen and tenderness around the liver also chronic neutropenia and a raised tryptase of over 200. Medications are Fosamax [alendronic acid] 70mg weekly, Pulmicort [budesonide] and Ventolin [salbutamol], Zoton [lansoprazole] 15mg daily, ketotifen 1mg twice daily, amitriptyline 10mg 3 daily, Calcichew D3 two per day. All of which are generally keeping me under control.
[systemic mastocytosis, urticaria pigmentosa, asthma, osteoporosis, neutropenia, tryptase, adult]