How pain free should I hope for?

[Hot_Water]

Hi all - thanks so much for this forum.

I'm after some advice please. I was diagnosed with PMR in September 2021 and have been on tapering steroids (starting at12mg) since then, dropping 1mg per month. My question is should I expect my joint pain to completely go and be back to 'normal' ? I'm now on 2mg but still feel low levels of pain/aches, and have done for a few months (hard to pinpoint exactly when it started). I told myself this was probably 'the new normal' and I needed to get used to it, but after taking Ibuprofren for a bit of back twist - I had a day completely pain free day which was transformational! I'm now thinking I really don't want to live like this for (hopefully) the next twenty years (I'm 57). I have a good GP and can talk to her about upping my dose - but wanted to get your views.

Many thanks

[PMRpro Ambassador]

What was it like at your starting dose (a very low starting dose for PMR by the way). That is your guideline really for how much pain to tolerate - shouldn't be worse at the end of a reduction step than before it and anything that then increases must be suspect.

If ibuprofen made that much difference I'd be inclined to postulate it isn't PMR pain, If I were you I would stick at 2mg and observe how you do for a few weeks - is it stable? Is is getting worse? Does paracetamol help? How much ibuprofen do you need?

Did your PMR start after a dose of Covid?

[Hot_Water in reply to PMRpro]

ThanksAt the starting dose I was pain free, it just gradually crept back. Pain/aches are stable at 2mg, and I've been on this for 8 weeks now, was going to start a very gradual taper to 1mg, but will continue at 2.

Haven't tried paracetamol, and I took 2x 200mg of Ibuprofen which had a positive impact for 24hours.

If the pain's not PMR then what!!! ( it took me 6 months to get a diagnosis!)

And yes it was triggered by Covid...

I was due to see my rheumatologist but appt has been cancelled twice and now not until Nov...

[PMRpro Ambassador in reply to Hot_Water]

It does appear that Covid-triggered PMR goes away sooner than other versions - even the researchers are suggesting that. It may be that the other aches are other aspects of a post-Covid syndrome, a sort of Long Covid. You had been on pred long enough to affect adrenal function so the aches COULD possibly be related to that, adrenal insufficiency can also cause aches and pain and they might respond to painkillers - hence my query as to whether it works too. 400mg ibuprofen is a very low dose if it lasts for 24 hours - take it with food and you should be fine, I know that my rheumy would approve and tell you to do that.

[Hot_Water in reply to PMRpro]

Thanks !

[DorsetLady PMRGCAuk volunteer in reply to Hot_Water]

If you've only been taking ibuprofen recently...and only for back pain, then it may have muddled the waters.

But if you've had low level pain/aches for some time, then that could be PMR not being fully controlled.. pity you cant recall at what level they returned, then you might have an idea of what dose of Pred you actually require to get things back under control.

Are you still taking painkillers for back? if so, maybe stop for 48-72 hours and see what pain returns, i.e. is it just back pain or all over? If all over then, to me, that would point to PMR, and an increase in Pred required.

[Hot_Water in reply to DorsetLady]

Thank you so much.

I suspected I needed to up my pred dose, and you're right - it is annoying not be able to pinpoint the optimum dose, I'll have another look at my symptoms diary in case its clear...

I only took Ibuprofen for a couple of days, not taking it now, and definitely experiencing PMR joint pain/ache.

[DorsetLady PMRGCAuk volunteer in reply to Hot_Water]

Okay -if you can find YOUR level that would be good. If so then go back to it, and get stabilised..and there really is no rush to get to zero -you just end up in a pickle!