Vasculitis UK
5,677 members5,124 posts

About me - as at September 2016

I have Coronary Heart Disease, for which I have an annual review with my GP. This is fortunate because in November 2013 it enabled her to discover that I had a kidney problem. Without this annual review, things would have gone unnoticed until they got much more serious.

Investigation took almost a year, and in October 2014 I was confirmed with stage 3 Chronic Kidney Disease, caused by Vasculitis (Microscopic Polyangiitis). Treatment with cyclophosphomide (six infusions) and steroid, followed by maintenance on azathioprine, stabilised the condition.

By late 2015 vasculitis clinic attendance was down to every three months. However in May 2016 vasculitic spots began to appear on my lower legs. Azapriothine dose was increased , steroid reintroduced and clinic attendance increased to fortnighly.

Since then the spots have cleared, although a few have revived but cleared spontaneously in a few days. I am now being weaned off the steroid and clinic visits are down to every six weeks.

I count myself very fortunate. Apart from intial minor side-effects of the cyclophosphamide and azapriothine I have suffered no symptoms and the kidney damage has stabilised. As I am retired, attending clinic is not a problem and is only short journey away from my home in north London. Above all I am under the supervision of an excellent team, led by two of the UK's leading vasculitis consultants.

Electronic communication is a big help. The lead consultant has made it clear that I should tell him at once of any health issue. E-mail means I can do this quickly, without worrying that a phone call might unreasonably interrupt him from something more important, and sending a photograph if spots reappear is worth a thousand words.

4 Replies

It's good to hear you are being looked after so well and doing ok too.


Hi, can u let me know what hospital u attend plz, as I am still struggling to get answers. Thx suzy


Royal Free Hospital, Hampstead, London -

Lead vasculitis consultant is Alan Salama -

Also Sally Hamour -


Hi jgold, thank u for this, that is really helpful.



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