Possibly not increased enough?

[Claremont2023]

I was diagnosed Jan 2023 with PMR and have been doing a very slow steady taper. I was started on 15mg and have been slowly decreasing by 1/2mg every 6 weeks. Everything was fine until 7 weeks ago when I got down to 7 1/2mg and began to feel a few twinges, but stupidly last week went down to 7mg. I got more twinges plus feeling in a fog, so this Monday went back up to 8mg. Today I have had a slightly stiff neck and tonight my shoulders aren’t very comfortable. I also started getting ‘puffy’ knees. My question is have I gone back up enough? Should I have possibly gone to 9 or 10mg for a couple of weeks? I could kick myself for still going down to 7mg when I should have realised that was stupid!

Advice please.

[DorsetLady PMRGCAuk volunteer]

Usual advice for dealing with a flare -if that’s what it is - is to add 5mg to current dose for 7-10 days before returning to just above current dose - full details here -

healthunlocked.com/pmrgcauk...

In your case, I’d drop back to 8mg… but you should also consider that you are entering into the stage where your adrenals need to start waking up, and that may account for the ‘foggy’ feelings..

[Claremont2023 in reply to DorsetLady]

I did wonder if I’d arrived at that point, but didn't want symptoms to get a hold again. I think I’ll stick on 8mg for 4weeks then taper slowly again.

[DorsetLady PMRGCAuk volunteer in reply to Claremont2023]

Okay … see how it goes, but don’t just hope it will resolve itself. It might, but it might not..

[Claremont2023 in reply to DorsetLady]

Sorry, I’ve gone back to 8mg but are you advising staying at 7mg & waiting for adrenals to wake up? Should I have waited for a bit longer. I’m really grateful for your help.

[DorsetLady PMRGCAuk volunteer in reply to Claremont2023]

No… realised you were staying on 8mg… but you had suggested going higher - which is why I attached the flare protocol - but it sounds as you aren’t going to try that- is that correct?

If so, was just implying make sure 8mg is enough… don’t just assume it is.

[Claremont2023 in reply to DorsetLady]

Having read through the procedure twice I am going to go higher as recommended to get back on track & then reduce as advised.

Sorry to tie you in knots. And thank you again!

[DorsetLady PMRGCAuk volunteer in reply to Claremont2023]

No problem—- I was a girl guide dk used to knots ! 🤣😂

[PMRpro Ambassador]

I agree with DL's reply. But don't worry - everyone does it at some point! Just try to remember for next time ...