Has anyone had problems coming off their steroid medication?

When I was first diagnosed with SS I was placed on a combination therapy - prednisolone, dapsone and doxycycline. Many SS patients are still being treated with steroids alone, despite the increased incidence of relapse. Has anyone had problems coming off their steroid medication? Did your SS start to flare-up once the steroid dosage was reduced or the medication stopped?

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  • Some very useful information was posted on Behcet's Support FB group. In patient's with Behcet's syndrome (a similar condition to SS) who have a lot of trouble coming off their prednisolone, switching from prednisolone to hydrocortisone tablets can help. Once the prednisolone dosage is below 5mg, a patient can be switched to hydrocortisone 30mg (hydrocortisone 30mg = prednisolone 5mg). Over time, the hydrocortisone can then be reduced, giving the adrenal glands more time to start producing its own cortisone again. Cortisone is a natural steroid produced by these glands.

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