Fatigue !

[Blackberrybush]

Diagnosed with PMR in 2021, struggled like everyone and have now completely come off Prednisolone. I’m still getting days with hip and neck and shoulder pain but the worst is the fatigue. Some days I’m fine but mostly feel exhausted. Since stopping Pred my sleep isn’t good. Is it ok to have the occasional couple of weeks on 2 mgs for normality? Have only seen my GP twice, she’s mostly inaccessible, and was diagnosed in the ED !

[PMRpro Ambassador]

It is accepted that after getting off long term pred it can take up to a year for everything to get back into balance, especially adrenal function getting into smooth operation. To have been diagnosed in 2021 and be off pred now suggests to me you have done the last 5mg of taper relatively fast and your adrenal function is now struggling to adjust without any help from the pred dose.

Why did you settle on 2mg as a "holiday booster dose" so to speak? Is that because that is the last dose at which you felt well? If that is what you really want to do, I'd be inclined to suggest maybe going back to 1mg and then tapering from there VERY slowly as we suggest to give your adrenal function more time to adjust. I don't think a couple of weeks of "normality" would be particularly helpful in that respect as it could well confuse your body and then you will go back to feeling the same at the end.

[DorsetLady PMRGCAuk volunteer]

Would go for adrenals still struggling - so maybe have a read of this -but would also suggest your PMR is still very much alive and kicking - so maybe rather that an off/on approach with Pred - go back to 1mg daily.. and see how that is.

healthunlocked.com/pmrgcauk...

[Grammy80]

There is no great award for getting to zero....especially if you don't feel as good as you did before. There is no doubt in my mind I'd be taking 1 mg a day and see how you feel. I'm getting down in dosage but I'm not adverse to a maintenance dosage either. I think we need quality of life too.💞