Judy’s Story

Seventeen and a half years ago when I was 57 I was admitted to hospital after having five spinal fractures in less than five months and as a consequence lost five inches in height. I was diagnosed with severe osteoporosis. During my month’s stay the doctors were concerned about my spots/rash on my thighs inner knees and back. I told them I had had this condition for at least five years and that a blood test had shown no obvious cause. I was sent to a hospital for a skin biopsy. This revealed I had a rare disease called Mastocytosis. Several weeks later I had a bone biopsy on the hip plus two more which confirmed I had Systemic Mastocytosis. I was prescribed HRT for my Osteoporosis (the only treatment at that time) and ketotifen for my SM. The latter dosage starting at 12mg daily and gradually reducing to 3mg daily. After ten months on sick leave I returned to work for just two mornings a week until I retired. I was seen once a year by my Dermatologist for my SM and I appeared to be alright. However, after seventeen years a routine liver function test revealed I had a ‘deranged’ liver. I was told by a consultant Rheumatologist to come off my medication immediately. Two days later my urticaria flared up causing extreme itchiness everywhere. It was agony. It was worse in the evening and the early hours of the morning. I had to waken my husband  to apply aqueous cream with 2% menthol to the whole of my back.

After about three weeks my skin settled down but this was followed by cystitis and diarrhoea and severe intestinal pain. The pain always woke me up at 1am so I used to creep downstairs, make a cup of tea and sit with a hot water bottle pressed against my lower abdomen. I only had two hours sleep for several weeks which left me exhausted. I was then seen by a Gastroenterologist who gave me a thorough examination and requested various blood test investigations. He also requested an ultra sound scan which I have had (result enlarged liver) and a barium enema. He mentioned he knew nothing about Mastocytosis. I now felt desperate about my condition and to my great joy my grandson found this group on the Internet.

[systemic mastocytosis, skin rash, osteoporosis, bone marrow biopsy, abdominal pain, gastrointestinal symptoms, adult]