systemic vasculitis p-anca

[systemic]

My goodness, my daughter rang from Essex and when she started to read the blog she was crying so much I think because it was odd seeing all these comments re: consultant, Rheumatic, bloods o.k. etc., I was diagnosed in 2005 for my Consultant it was a eureka moment when he announced the diagnosis.It had taken 6 months to find someone who knew what was wrong, however, apart from my inflamed nerves,feet and hands, the muscle pains had cleared so I was in remission. I came home and looked up what, on earth this vasculitis was, without much success. My first flare up a year later involved terrible pains in my shoulders arms and hands, eventually went to my GP, urgent appointment with Consultant bloods all awry medication we won't go into details.More appointments with consultant kept on medication azathioprine steriods omeprazole etc back to the old everythings fine, on a routine consultation 2009 urine sample bad news off urgently to Nottingham Renal unit immediate biopsy, hey ho attack, cylclophosphomide infusions. Since that time coincidently I'm sure, from being a extrremely fit 65 year old I find walking painful, used to do 10-15 mile rambles in the peak district, it now takes me all my time to do the mile to the shops, swimming is my one relief. The nerve damage I have learned to live with, otherwise apart from a recent attack on my lung which is now damaged, but when my vasculitis/rheum. consultant saw the notes from respiratory doctors, said,

as I am an ex smoeker it was smoking related, to which the respiratory docs said highly unlikely, more likely to be systemic vasculitis or previoous infection so now a damaged lung.The renal people have been very supportive but then they aren't in charge of my vasculitis unfortunatly. Sorry to have rabbited on but it is such a relief to know there are other people out there,

[Ayla Volunteer]

You have really 'been through the mill' and I hope it has now bottomed out with no further nasty surprises in store! Unfortunately, this disease is very unpredictable and flares, and involvement of new areas of our body, often happen even in the best managed cases. Somehow we all learn to expect the unexpected, if you know what I mean!

I, too have ANCA vasculitis (MPA) and am treated at Nottingham City Hospital's renal dept. The consultant, Dr McHaffie, is excellent, he really knows his stuff and seems very interested in vasculitis. I have had two kidney biopsies in two years there and went through much of what you describe in terms of treatment. I am now on low dose prednisolone and mycophenolate mofetil and am very confident that my treatment is as good as it gets. I have seen the consultant rheumatologist, Dr Lanyon, at the QMC in Nottingham just once but, once the kidneys became involved, my primary care was transferred to the renal dept. at the City Hospital. I don't know if this would be possible for you but you do sound as though you prefer the renal team.

Don't be afraid to ask a lot of questions, don't be afraid to give your own opinion on your symptoms and make sure you get answers! Good luck.

Ayla

[systemic]

thankyou, it was quite a surprise to find you are attending the renal unit in the City. I live quite near Kings Mill Hospital, for what its worth, so I will see how things go, I am still attending the renal unit 5 monthly so they do give me confidence indeed it was Dr. Bepp who organised my biopsy overnight and even organised the follow up medication so fingers crossed she keeps me on the "books".