I have been on Prednisilone for approx 3 years now. Had trouble with DMARDS. Various doses and I now have vasculitus.
Has anyone else been on long term steriods and what effect have they had.

Also has anyone got vasculitus in legs and can tell me what to expect and how to treat. My Doctor just increases my steriods but for obvious reasons I do not want to have to do this.

Hi

I have been on varying doses of prednisolone for over 23 years and like Jenni have experienced various problems along the way. When I was first diagnosed steroid was the "in" treatment and consequently now I cannot do without them (although I'm on a bucketload of other stuff!) because my adrenal glands do not produce their own. Once I cut down below about 5mg I start to suffer light headedness, muscle weakness and low blood pressure. From what I understand this can take a long time to happen and certainly 3 years, although a long time, shouldn't be too problematical.

I too have had an episode of vasculitis but in my arms and hands. The treatment was high dose prednisolone. It was several years ago and has never recurred. I don't know whether other treatments have been introduced more recently.

I am surprised you are taking steroids as these days they tend to be reserved for emergency use. Have you been considered for anti-tnf as you seem to have had problems with DMARDS?

Lyn

Thank you for your post. I have troubles on DMARDs and cannot take tried 3 now. Never been offered anti-tnf possiblly due to my heart condition. Can you tell me if the vasculitis rash disappeared all together on high steriods mine has just reduced a bit but not gone.

Jo

Hi Jo

The rash did go, eventually, but I am left with skin damage which takes the form of very small areas of non-pigmentation, like little white blotches. It's not particularly obvious but there nonetheless! I don't worry about it, the vasculitis went thankfully and that was the main concern.

Hope things settle down soon,

Lyn x