Is it a flare or something else?

[crafty_grannie]

I've had PMR/GCA for seven years and finally down to 4.5mg for many months. Yesterday I went down to 4.25 and have been in awful pain since, as bad as when I first had PMR. Could it be a flare or maybe my hips and knees playing up or perhaps I've gone down as far as I can go. It seems such a small amount of pred and the pain came on so quickly, I can't really imagine that it's the pred, but the pain is just everywhere and much worse than normal hip pain.

Many thanks for your thoughts. I really appreciate everyone's input.

[PMRpro Ambassador]

How strange - such a tiny reduction is usually good enough to escape the steroid withdrawal woes - that is why we suggest it! Could it be something else - have you done anything different in the last few days? Could you have caught an infection?

[crafty_grannie in reply to PMRpro]

Thanks PMRpro. Doesn't really feel like an infection, but under lots of stress at the moment. Maybe that's made the OA worse, though panadol osteo made almost no difference. I'll give it a day or two and see how it goes. Haven't been sleeping well the last few nights so that wouldn't help. I'll be on 4.5mg for the rest of the week so I'll see what that does. Thank you.

[DorsetLady PMRGCAuk volunteer in reply to crafty_grannie]

If you have been under stress lately, then you may well have been heading for a flare anyway, and the drop down may have just coincided with it coming to the fore.

See how the 4.5mg goes… but it might just be on the cusp of just enough/not enough…. and whilst it was okay before the recent stress, it doesn’t take much to tip over. If it isn’t enough - then you know what’s required…

[crafty_grannie in reply to DorsetLady]

Thanks DL, I think it might be just on the edge. I'll see what happens at 4.5.

[PMRpro Ambassador in reply to crafty_grannie]

Stress will have a double whammy - both on the PMR and on your needs in terms of adrenal function and corticosteroid available. And then it really doesn;t take a lot to upset the applecart good and proper.

[Raewynne in reply to PMRpro]

It's funny you speak about tiny reductions and increases.I went from 4 to 3.5 for the second time.I became anxious and depressed etc.Quite noticeable. A friend suggested I increase by .25mg and it's amazing the difference. I'll try again at that dose.!

[crafty_grannie in reply to Raewynne]

Yes Raewynne, looks like a tiny reduction can make a difference when there are other stresses. Thank you

[SnazzyD]

The speed and such a big response of such a small amount sounds like it’s something else. If it’s a pain all over thing I’d suggest possible withdrawal or your body is complaining about some extra use of it recently or a viral illness.

[crafty_grannie in reply to SnazzyD]

Yes it did seem a big response. I think the stress is getting to me at the moment and that may have magnified things. I'll see what the next few days brings. Many thanks. It is good just to be able to ask. When it's all in my head it becomes overwhelming.

[crafty_grannie in reply to SnazzyD]

Thanks Snazzy D, I think the something else is stress, plus a flare of OA.

[Gaz227]

I have exactly the same issue , at exactly the same dose and I have had the same reaction multiple tomes , I’ve tried to stick with the 0.25 drop but things just got worse , I’m convinced it’s an adrenal issue but the Rheumy nurses that deal with me aren’t convinced trying to speak to the consultant about the issue but I know he will just want to increase the MTX , I’ve had two increases in MTX and neither of them helped me reduce any pred , I’m just staying on 4.5 for now and accepting a better quality of life .

[crafty_grannie in reply to Gaz227]

Thanks Gas, I think I'll be staying on 4.5 for a while too. It's hard when others don't seem to listen. All the best.

[Louisa1840]

Hello Crafty Grannie! We could be twins in that I was diagnosed with PMR in 2017 and I am now down to five mgs pred. I do know from my own expereince (after the death by suicide of a much loved grandson 18 months ago) that stress plays an enormous part in our ability to lower pred. Before he died I had been down to 3 mgs and I had to go back up to 15. I am now on the downward journey again. All the very best......

[crafty_grannie in reply to Louisa1840]

I'm so sorry about your grandson Louisa. That would be terribly difficult. All the best with your reduction now.