Should I increase my steriods

[tiggerwestie]

I was diagnosed 6 months ago and take 400mg of hydrochloroquine and have managed to get down to 7.5 mg of prednisone a day but rash has come back with sore eyes, cracked lips, aching joints and feeling very tired although unable to sleep but have been told I must try and get off steriods as have been taken them for 8 months.

[PMRpro]

I don't have lupus - but I have been on pred (there is no other option for my autoimmune disorder) for heading for 8 YEARS at higher doses than that and I haven't fallen apart yet. I have none of the "inevitable" side effects that GPs are all too keen to identify and nor do many others. There are a lot of people who take that level of pred for life.

Who has told you you MUST get off pred? If it is the GP they are probably panicking for no real reason yet. You are at a level that is regarded as what is called a "physiological dose" - about the same amount your body normally makes to be able to work properly.

If it is your rheumy - then they need to come up with another option. You must discuss it with them and get a realistic appraisal of what you can be offered.

[Buffy14 in reply to PMRpro]

Thats good you have no side effects to steroids I have been on them for 14 years , in the early days 40mg and 30mg for months at a time . I am only on 5mg now but I increase when I think I am going to have a flare but I am on immunosuppressants aswell . I have osteoporosis now though which is most likely due to the steroids just waiting for results of my recent dexa scan to see if it has got worse x