Overdid things now can't find right level of steroids

[Renesch]

In March I was down to 5mg of prednisone and felt wonderful so for better or worse I did a 5 day 4 night mountain hike here in New Zealand. I'm not sorry I did it as it was wonderful and the best thing I have done for myself in years.

However stupid that was and I know all the rules about not overdoing things and I have learned my lesson I can't seem to get back on track. I saw the doctor who suggested I go back up to 15mg and to reduce by 2.5 a month until I was at 10mg. The first reduction went well. Then I got covid. The 2nd reduction probably should have been closer to 1mg but like many I was keen to reduce. Now well over covid and 6 weeks on 10mg having done the very slow up down reduction over 4 weeks to get there I have the pain and tiredness back again. For the last 2 days I have gone back up to 12mg but so far getting worse rather than better.

Any advise please would be very welcome. Back to 15 for a few days? Back to 15 and start again? Keep hanging in there on 12?

Many thanks

[PMRpro Ambassador]

I think you need to talk it over with your doctor- you do possibly need to start again but you do also have to consider you have had Covid too and you may not be over it as well as you think you are. Long Covid can be very like PMR or another autoimmune disorder. Plus once you start to yoyo your dose as you have done it almost inevitably causes problems. You may even need more to get things under control and then you will have to proceed very slowly and carefully - and not do things that risk a flare. There are experts who believe that overdoing things physically can trigger a resurgence of the disease process.

[DorsetLady PMRGCAuk volunteer]

oh dear -and agree with PMRpro things are a bit too complicated for a simple answer.

You do need to discuss with doctor - and whereas we would normally say for a straightforward flare up, zap it with an extra 5mg increase and then reduce quite quickly -don’t think that’s an option for you.

Needs a slower and more measured approach.