That’s what Ive got. Its not common, and often goes undiagnosed. I might well not have found out if I had not changed doctors and had a routine urine test. It’s likely that my consultant only has me on her books with this. There may be 300-500 people in UK.
Its also called Berger’s Disease, and is contracted following throat or chest infections. I may well have started following a streptococcal throat infection I have in early 2000 or 2001 (can’t remember). I was diagnosed in Feb 2002 following a biopsy. I have been treated with increasing amounts of blood pressure medication since that time, initially at Bradford St Luke’s (where I was born!) but more recently locally.
My medication is currently:
Doxazosin (as Mesilate) 4 mg x 1per day
Soduim BiCarbonate 500mg x 4 per day
Candesartan 160mg x 2 per day
AlfaCalcidol 500ng x 1 per day
Viazem XL 180mg x 1 per day