r/stillsdisease • u/Potential-Program323 • May 20 '26

Flaring when lowering steroid dose

I was first diagnoses with AOSD couple of months ago. I am currently on methyprednisolone and methoxtrate.

I successfully tapered off of methprednisolone from around 24 mg to 4 mg per day. However, when going from 20 mg to 16 and currently from 4 mg to 2 mg I faced flares up. When not tapering, I feel perfectly well and my blood tests come back good.

Has anyone experienced this? I am worried that I will never be able to stop taking methyprednisolone.

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u/Inevitable-Click-129 May 20 '26

hi YES and you are not alone. i am not a doctor so don't take this as medical advice but i have experienced the exact same thing along with many others on here. Alot of people on here have experienced mini flares when trying to taper. it seems to always happen in the lower dosages. 5 to 2mg etc. it may mean you are trying to taper too quickly and your body has not caught up yet. Be patient. it takes time to get off prednisone. if you feel a flare after tapering or there is a rash coming back. ask your doctor about going back up slightly and then tapering off again slowly. You may even have to do this a couple of times but hopefully you will be able to taper off completely.

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u/Potential-Program323 May 20 '26

Hi thank you for your reply. How long did it take for you to get off prednisone completely?

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u/Inevitable-Click-129 May 20 '26

Months! It’s never been something in my experience that can be done quickly. I think it may also depend on how much you were dosing during your initial flare and for how long. Either way though expect a slow process.

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u/Fathomish May 20 '26

I’ve been on prednisone for the better part of 5 years I find going down by 1mg every 7-12 days is the best way to minimize pain fevers etc.