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Hello -- It all began 2 years ago ( at age 48 ) with a flu like illness, bad joint pain and swelling, and a lot of fatigue. Abnormal blood antibodies. Plaquenil and 10 mg prednisone helped immediately, and am now on 5 mg prednison and plaquenil. For the past 1.5 years have been clinically feeling OK. Not completely back to normal, but can pass for normal. Joints are normal, fatigue gone, can occasionally ride a bike 10 miles with the kids, go bowling occasionally, take walks, work a very stressfull 60 plus hours per week job, etc. But have less endurance and energy than "normal" and might ache after relatively mild exercise more than "normal". Compared to how I felt 2 years ago, this is excellent and quite manageable. Fortunately, no other new symptoms or problems other than the joints.

Questions: a) How critical is it to further reduce the steroids ?
b) How likely is it that things will stay the same over the next few years? or get better :) or worse :sad: ?

Thanks -- Bogey
 

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Wonderful news ! Long may it last :)

It is good to get right off the Prednisone if at all possible to reduce the risks of side effects like osteoporosis, cataracts, diabetes and so on. Lowering the dose must be done under medical supervision and very slowly indeed ( usually). The risk is that the adrenal gland can no longer start producing cortisone again.

If you try reducing the Plaquenil do that very gradually too, to see how it goes. It is common to stay on Plaquenil although at maintenance dose usually 200 mgs, for a year or two after remission is declared. People can stay on Plaquenil for years without risk of long term side effects although theoretically the risk of eye toxicity is said to increase with time and cumulative dosage so more frequent eye testing might be in order.

There can be no guarantee that the lupus might not start up again. Lupus can be divided into three groups according to Dr M Lockshin an eminent lupologist, those who have relapsing -remitting experience, long term remission and those with chronic active disease

Chronic active disease is the more common situation, accounting for more than half patient years, he says :)

http://www.hss.edu/conditions_14138.asp#Prognosis

You don't know if you have relapsing -remitting unless you come out of remission. I hope you don't ! :)

Clare
 
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