I'm still learning about vasculitis, as a recently diagnosed patient, and am now in week 10 of my treatment for Churg Strauss Syndrome on daily doses of 10mg Prednisolone and 1000mg CellCep.
In the early weeks I had quite bad leg/ankle/foot swelling, particularly my left side, and was eventually put on Furosemide to help reduce the fluid build up. Nothing happened for several days, when it should have worked much quicker, so the dose was doubled and the swelling eventually subsided. So I was able to get about without having to raise my feet for hours during the day.
After about a week of no swelling, a few days ago the left ankle/foot started to swell again and and also the right one but to a lesser degree. So now I'm back having to limit how long I can having my feet pointing down before they get really swollen. Overnight the swelling goes down totally but within the first hour after getting up, I can 'feel' the fluid starting to run downwards again inside my leg. This is really annoying me since my breathing is now much better with o2 at 94-95% which is a good value for me.
I realise that I probably haven't reached the full remission stage as yet, although I don't have any other symptoms now (leg muscle pains, leg rashes and skin lesions are all gone).
So my questions are ...
1) what causes the fluid build up?
2) can I expect to see regular swelling appearing?
3) is this just a typical feature of CSS?
I would be interested in your comments .... Jonty