Is this a flare?

[granofthewest]

I was diagnosed with PMR in Dec 2019 after tests and x-rays, prescribed 20mg prednisolone initially and successfully tapered down to 1mg by early Dec 2021 following DL slow tapering method. GP had asked me to contact when I got to this, telephone consultation early Jan after being at 1mg for 4 weeks, beginning to have pain in right hip and leg. She asked me to stay on 1mg for another 4 weeks then reduce to .5mg. Haven't done so as pains have got much worse, can hardly climb stairs today and walking with a limp. This is presumably a flare? Should I double my dose to 2mg for a week and see if it helps?

[SheffieldJane]

I think I would want investigations to ensure that this wasn’t something else, like sciatica or even osteoarthritis. I doesn’t sound like typical PMR, unless this is how your disease began. It’s not bilateral. I am concerned that I tend to put everything down to my PMR/GCA/LVV when it could well be something else with a different treatment protocol. Pred does help other conditions and indeed mask them . I hope you get relief soon, it sounds miserable and a bit more Pred could help - you can only try.

[DorsetLady PMRGCAuk volunteer]

Does sound suspiciously like hip arthritis to me, can you request an x-ray?

Also maybe try painkillers or topical gel to see if that helps.... as SheffieldJane says doesn't sound typically PMR- although that's not to say it categorically isnt...so perhaps a bit of detective work required.

[granofthewest in reply to DorsetLady]

Had an x-ray in April and result was that there was no arthritis and hardly any change from November 2019. Have tried going back up to 10mg from 9mg but am struggling to walk. I've also tried suggestion of tring third of dose evening and two thirds morning but no change. Wondering if I ought to increase to 15mg for a few days before coming back down to 10 mg again?

[PMRpro Ambassador in reply to granofthewest]

Have they considered bursitis? It won't show on x-ray.

Mind you - x-rays don't always tell the whole story even with OA!

[DorsetLady PMRGCAuk volunteer in reply to granofthewest]

if nothing else helps, it’s worth trying. But if it’s bursitis as PMRpro suggests ordinary painkillers may help along with heat. Not that you may need extra at the moment / depending on where you live!

[granofthewest in reply to DorsetLady]

I did try suggestion by PMRpro and on Wednesday morning took 50mg ibuprofen plus 40mg paracetamol as well as prescribed 250mg Naproxen but sadly no pain relief

[PMRpro Ambassador in reply to granofthewest]

Only 50mg ibuprofen? That is baby doses ...

[granofthewest in reply to PMRpro]

Sorry missed noughts! 400mg ibuprofen and 500mg paracetamol.

[PMRpro Ambassador in reply to granofthewest]

More like it I took that today plus 50mg tramadol. It worked for a while but the ache is there after walking to the pharmacy and back ...

[DorsetLady PMRGCAuk volunteer in reply to granofthewest]

Okay -well then maybe treat as flare - and see what happens - something good hopefully -

healthunlocked.com/pmrgcauk...

[granofthewest in reply to DorsetLady]

Thankyou for the link which I've read and will take on board. I just want to be able to go out again as I can't even walk to the end of my short road without pain. My husband suggests a walking stick which might help with stability but not pain I don't think.

[DorsetLady PMRGCAuk volunteer in reply to granofthewest]

Hubby is right -walking stick might make you feel safer but no it won’t help the pain.

[PMRpro Ambassador in reply to granofthewest]

Actually - I found that using a pair of crutches made a big difference to the pain as I didn't put my full weight onto the bad hip.

[PMRpro Ambassador]

Personally I doubt that just 2mg for a week would be enough - if this is PMR (and it sounds likely) it is probably because 1mg isn't QUITE enough and it has taken several weeks for the left over inflammation each day to build up enough to cause symptoms. You don't say, but I'm assuming you went 2mg, 1.5mg, 1mg? In which case, 1.5mg is probably your ongoing dose at present.

BUT, since it is one-sided still and worse on stairs - it could be isolated greater trochanteric pain syndrome - what used to be called trochanteric bursitis. It can be part of PMR but it can also happen separately. It causes pain on the outer aspect of the thigh, making it difficult to lie on your side. In PMR it is often bilateral - but also worse on one side - and of course that just clouds the view. Has anything similar been part of your PMR before? If so - have you tried icing and stretches? If it is separate from the PMR it would eventually resolve if rested but if it is part of your PMR, the PMR seems to feed it and keeping the PMR inflammation under control is important.

And it could, as has already been mentioned, something else entirely. So it needs to be examined and preferably x-rayed.

IF it appears to be the PMR, then adding 5mg to the dose where you have flared for 5-7 days should clearit out and you can drop straight back to 2mg or even 1.5mg. But don;t dropback to 1mg, it is presumably not quite enough.

Prof Dasgupta told us in a seminar he often keeps pateints at 2 to 3mg to reduce the risk of relapses - so being at 2mg or below that still keeps things happy is really good and OK for long term use.

[granofthewest]

Many thanks to everyone for help. As I've said it feels just like it did from the outset, I will try 5-7 days at 5mg and drop down to 1.5 after that, contacting my GP next week when I've tried it to let her know and ask for further tests if it doesn't help. I did listen to Prof Dasgupta on website so just wondering if I have dropped too low.

[DorsetLady PMRGCAuk volunteer]

Hope it works for you.

[piglette]

Do painkillers help the pain in your hip? If so you may find it is something like osteoarthritis rather than PMR. If it us a flare, I would go up 5mg for a few days to really hit the PMR on the head and then drop back again.

[granofthewest in reply to piglette]

Thankyou. Taken ibuprofen today but still in some pain. Will try 5mg for 5-7 days.

[piglette in reply to granofthewest]

Good luck.