adrenals waking or still PMR?

[Gacaro]

I’m 72 and had PMR for nearly three years. My bloods were normal but I had immediate relief when starting on 15mg. I have twice got down to 2mg but then I feel so tired, have stiffness in my shoulders (although nothing like as bad as when was first diagnosed) together with groin pain and I feel like I’m walking through treacle, my legs feeling so heavy. I loved hill walking and was very fit but now it’s such an effort all the enjoyment has gone. I want to know is this my adrenals waking up and should I persevere with the taper or is it PMR coming back. At the moment I’m on 3mg but very tempted to go up again I have always felt ok around 5mg but obviously want to get off the Pred as soon as possible. Any comments would be appreciated as it’s almost impossible to see my GP!

[piglette]

the tiredness sounds like the adrenals but the stiffness etc more like PMR. I would go up 5mg for a week or so and see if that works then drop down to where you felt OK and go from there.

[DorsetLady PMRGCAuk volunteer]

Sounds like a combination of both.. but as the stiffness is more likely to be PMR -then might be sensible to treat as a flare. See link - and then drop back to 2.5mg maybe staying there for a few months. That gives adrenals a chance to catch up.. and it’s a dose that an eminent Rheumy kept/keeps his patients on sometimes for months. At 3 years in, your PMR may well have some time to go yet.

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

" obviously want to get off the Pred as soon as possible"

It isn't your decision - you will get off pred when the autoimmune disorder underlying the PMR symptoms has burned out and gone into remission. If you try to get off pred before that, all that will happen is that the inflammation will build up again until - without pred - you are back at the beginning and need to start all over again. And if you allow flares to establish - it gets harder to get them under control again. It doesn't matter how low the disease activity it, the inflammation builds up in the same way a dripping tap fills a bucket sooner or later.

If you feel good at 5mg, that is the dose you need for now - and 3 years is early days on the whole. If 5mg gives you good quality of life, that is what you are looking for. You were never aiming to just get off pred - you are looking for the lowest effective dose, the lowest dose that gives the same symptoms relief as the starting dose and at present that is probably 5mg. YOu will get lower - just not yet.

[Spazzy55 in reply to PMRpro]

Lovely reply

[Brooklyn747]

I've got absolutely no advice for you Gacaro as the good ladies with the expertise have delivered that to you.I just wanted to say how I relate to your post and you are not alone on this p.m.r. journey, it's so damn frustrating and changeable, if this were a card game I'd throw them down and walk!!!

Good luck 👍

[Angelsmummy]

Aaaaah but we have a trick up our sleeve ,an “ Ace” It is called PRED!xxx🎄🎄🎄😜