I have cerebral vasculitis and also pmr, I finished a second course of cyclophosphamide Mid march, I was ok until about three weeks ago when

[Louzoejf29]

I had a chest infection, since both vasculitis and pmr have flared, any idea,s if this could be due to chest infection have had a course on antibiotics.?

[PMRpro]

Most autoimmune illnesses have a tendency to flare if you have an extra stress - PMR certainly does! That stress may be stress as we usually think of it or it may be another illness or infection.

Are you also on longterm pred for the PMR? Because as far as I know, that is the only answer to the usual thing given the name of PMR - you can have the symptoms of PMR due to other disorders but PMR is usually a pred-responsive illness. And if you are ill with something else you often need a slightly higher dose.

[Louzoejf29 in reply to PMRpro]

Yes I am on 10mg daily, started on 20 for three days then 15 then ten condition improved within a week. Have tried to reduce went yo nine for two weeks, then eight but when went to seven pain back in two days, back on ten now was ok until chest infection.

[PMRpro in reply to Louzoejf29]

That is far too fast a reduction for PMR - and the speedy response to pred indicates it is PMR. The reduction should be in terms of months not days or weeks and overall something like at least 2 years. The best documented recommendation we have from medics is 6 weeks at 15mg, 6 weeks at 12.5 then 1 year at 10mg which achieves a relapse rate of 1 in 5 rather than 3 in 5. The group in Bristol has published this paper describing their approach:

rcpe.ac.uk/sites/default/fi...

No research has been done on the best approach to reduction but a group of patients have worked out a much slower reduction where we go 1mg at a time, a consultant in the north of England is trying it as well with his patients and finds it works very well with no relapses.

[Louzoejf29 in reply to PMRpro]

Thanks I have been on 10mg for nine months, my consultant in yorkshire said to try 1mg reduction at a time, he did say he did not think I would be able to reduce much.

[PMRpro in reply to Louzoejf29]

Some people can't manage it "overnight" we have schemes that spread the reduction over much longer and that seems to help. Ask and we'll give you details. But the key seems to be to get the inflammation well under control at the start before starting to reduce. Where is your consultant based? I'm involved in a PMR research group based in Leeds.

[Louzoejf29 in reply to PMRpro]

My consultant is based at LGI leeds.

[PMRpro in reply to Louzoejf29]

They must know each other!