Flare or sustainable state?

[Sanekate]

I feel like I'm in a permanent state of mild flare (a little in shoulders; slightly more in hips). This has been for about 4 months, since I got below 6mg. It doesn't seem to be getting worse and is live-able with, so I'm reluctant to increase pred. Am I tempting fate?

[DorsetLady PMRGCAuk volunteer]

What dose are actually on at the moment - last post says 4.5mg?

If you’ve had odd issues over last 4 months, then maybe they are due to something other than PMR. You could try painkillers to see if that makes any difference.

If it were PMR then you would expect them to get slightly worse at each reduction….but it sometimes takes a long time for enough inflammation to build up again and cause a real problem.

Whether you are tempting fate, can’t say, but it might be worth putting a hold on any further reductions for a couple of months -and see if things change.

But do keep an open mind, and obviously if it is a flare, the sooner you catch it the quicker you gain control.

[Sanekate in reply to DorsetLady]

Thank you - I'm holding at 4.5. I will stay here a while longer I think and see how it goes. Pred reduction feels like a playground game where I have to move when it's not looking!

[PMRpro Ambassador]

Adrenal insufficiency can cause muscular aches too. And if you have a little bit of bursitis it probably doesn't respond to oral pred that much except at high doses so might not change a lot.If it were me I;d take a holiday from reducing for a few months and see what happens - because at this level it is probably helpful with the return of adrenal function too. Rod Hughes likes to keep patients at 5mg for up to 9 months - he finds it makes the onward journey better.

[Sanekate]

Thank you. I hadn't thought about the adrenal thing. I'll stay where I am for now & resist GP's pressure to reduce

[SnazzyD]

I don’t know if it’s the same for you, but I felt fluey achey a lot of the time until my adrenal function pepped up a bit. You know when that’s happening because you feel better day after day or have more good days than bad.

[alansouthworth42]

I can empathise with your concern. I am an 80 Yr old quite fit male suffering from PMR for over 10years, having been on a maintenance dose of 5mg prednisolone for sometime I recently started to taper and am currently on 3mg per day with some returning symptoms ie neck, shoulders and hips which I can tolerate.

[PMRpro Ambassador in reply to alansouthworth42]

I'd stick there - Prof Dasgupta probably would have. A bit of discomfort is OK if you can tolerate it - but it if increases, beware, the left-over inflammation will build up and can set you right back.