Seeking advice

[Oldnets]

After the pain and stiffness of PMR flareup settles how long does the weakness and feeling unwell last?

[Constance13]

I’m afraid that is like asking “how long is a piece of string?”

Every one of us is different and pain is par for the course I am afraid.

[Marijo1951]

My experience is that the pred relieves the pain and stiffness, but it does nothing for the fatigue and malaise. I first had symptoms of GCA and PMR in March/April last year. I was finally diagnosed on 31st July, given pred and felt all the pain and stiffness melt away within hours, but there hasn't been a day since when I haven't felt ill and tired, like a permanent bout of flu. It's hard to accept but that is the only answer - learn to pace and be grateful for those days that are not so bad as usual.

[PMRpro Ambassador]

How long is a piece of string? And I hadn't seen Constance's reply!!

The feeling unwell may not go away for some time for some people. The pred is only managing the inflammation even when you have to increase it - the actual autoimmune disease process is still chugging away in the background and can make you feel flu-ey and fatigued. For me I'd say it is a few months before the disease activity has faded enough for me to say I'm back where I was. And only then can I reduce the dose of pred without noticing a big difference.

[Oldnets]

Thank you for your reply. I definitely recovered quickly after treatment when first diagnosed and I definitely felt a lot worse back then. Maybe flare ups are harder to recover from.

[PMRpro Ambassador in reply to Oldnets]

I think there is also an element of there being such a difference between the illness and the way you feel on the starting dose of pred then which is perhaps less obvious after a flare. And yes, flares are often very difficult to recover from and that is part of the reason we say to do your best to avoid them!

[Oldnets in reply to PMRpro]

Thank you again. I am quite angry with the Rheumatologist at the hospital

who left me o 1mg and told me to stop taking pred after another 2 1/2weeks. My inflammatory markers were up but I had no pain then until a week later.

[PMRpro Ambassador in reply to Oldnets]

No - common enough for things to lag behind in both directions. But raised markers need to be followed and see if they rise further or symptoms appear. Not ditch that 1mg that was just holding but not quite...

[Oldnets in reply to PMRpro]

Thank you.