Is it a flare?

[Jayveedee]

Diagnosed last September and have been able to lead a fairly normal life since apart from stiffness and tiredness. Had got down to 11 mg tapering slowly until this morning when I got out of bed and felt as if someone was sticking red hot knives into my left hip. I can honestly say it’s the worst pain I’ve ever experienced and hasn’t eased at all. Doctor said to increase Prednisolone by 5mg and prescribed co-codamol which haven’t helped at all. Is this my first flare and have I got away lightly until now? Grateful for any advice please.

[SheffieldJane]

I really think that your doctor is remiss for not having this pain investigated, “ the worst pain you’ve ever experienced!” I think this warrants an XRay. PMR pains tend to be bi-lateral, this sounds more like an injury, unless the other hip has joined in. I had terrible groin pain at the beginning of my PMR, always both sides. If it continues, I’d be inclined to go to A&E where they will investigate it for you - even if Prednisalone gives you some pain relief. Let us know what it is. Could it be arthritis?

[DAN38655 in reply to SheffieldJane]

To some extent I think that bumping the pred dose for a day or two is a useful experiment, to perhaps see if the pain is or isn't the result of an inflammatory condition.

Without the patient reporting any trauma, it seems unlikely that a bone broke, not that it couldn't happen though. Also, surgical repairs sometimes act up later if a screw head irritates a soft tissue or a tendon.

It may be some kind of short-term nerve issue, hopefully resolving and allowing the OP to resume their previous pred dosage quickly.

Hopefully not the result of an infection which might be indicated if swollen lymph nodes were to appear.

I occasionally wake with some new kind of ache or pain, and recently had such a pain in my big toe. I didn't investigate well enough and went through my day mostly pain free, but later found a piece of very thin wire embedded deeply into my toe when my sock snagged on it as I removed my socks before going to bed. I felt silly for not having investigated it but it has healed up nicely since then (the wire turned out to be a bristle from a small wire brush I had been using).

It will be very interesting to hear how the OP is feeling in 24 hours. Hopefully this is just something transient!

[Nextoneplease]

I agree with SheffieldJane, it doesn’t sound like a flare unless the other hip or your shoulders etc are now involved. I think it’s too easy for the GP to just blame it on PMR. I’d request an x ray and if the GP doesn’t agree, you could, as SheffieldJane says, go to A&E. Or where I live, there are smaller urgent care centres which often have x ray facilities. Don’t suffer, do follow this up if it’s not better by tomorrow xx

[Jayveedee in reply to Nextoneplease]

My right shoulder is playing up as well, but I’ve never had pain on both sides, it’s always been one or the other.

[SnazzyD]

I agree that it’s worth trying to have other potential issues explored. I will ask though, have you been doing anything repetitive or strenuous? Even if routine and not considered out of the ordinary. You’ve been on Pred for about 6 months now and may be starting to get the weakening effects of Pred on the muscles and ligaments. This can mean that suddenly after the boost of Pred getting rid of pain as if all is well, you start to be less able to do what you did previously, especially if you had a high level of activity before and had a high baseline for normal. I didn’t have PMR, just GCA but found I had to be really careful not to hurt myself.

[Jayveedee in reply to SnazzyD]

I looked after two dogs for a fortnight so daily walks on beach and then loads of washing when they went home so feel that might have been the problem, especially, as you say, that was quite normal for me last year.

[DorsetLady PMRGCAuk volunteer in reply to Jayveedee]

In that case could well be a flare…..have to say I would have thought it could be something else if Co-codamol had helped.

Perhaps follow the advice in link for a flare - but do be aware of other things, and maybe request X-ray to rule out.

healthunlocked.com/pmrgcauk...

Let us know how you get on please.

[Jayveedee in reply to DorsetLady]

Thank you Dorset Lady, I will.

[PMRpro Ambassador]

That isn't really typical of a flare of PMR and as already suggested, rather than just knee-jerk increase the pred, an x-ry at the very least is required. I would think bursitis is more likely, especially since you say you have been walking a lot recently - but avascular necrosis couldn't be ruled out either,

But tell us more about "My right shoulder is playing up as well, but I’ve never had pain on both sides, it’s always been one or the other." That really isn't typical of PMR - but it would be for other things. Do the symptoms move and come and go?

[Jayveedee in reply to PMRpro]

When I was diagnosed I had pain in my right hip and right shoulder which completely disappeared when I started Prednisolone. The hip pain never came back but the right shoulder is painful and I’ve had general stiffness and aches mostly in my knees. Last month I had a three train, five hour journey to visit a friend and then looked after two dogs for two weeks. Because I didn’t feel too bad I’ve been tapering by 0.5 mg every few weeks and think I might have done it too quickly. I was referred to a rheumatologist last October and still waiting for an appointment. The pain now is my left hip, the first time I’ve had a problem and paracetamol and co-codamol haven’t helped. Tempted to try ibuprofen although I know you’re not supposed to with steroids. Thank you for your help, it’s very much appreciated.

[SheffieldJane in reply to Jayveedee]

I wonder if the dogs pulling on the lead have caused a muscular injury? We are prone to this on steroid treatment. Whatever, this needs investigation as everyone agrees.

[PMRpro Ambassador in reply to Jayveedee]

But it sounds as if it is joints you are having trouble with? Rather than muscles and soft tissue around a joint

[Jayveedee in reply to PMRpro]

Taken 15mg Prednisolone this morning so hoping that will help.

[DorsetLady PMRGCAuk volunteer in reply to Jayveedee]

only if it IS a flare.....but as suggested it could be other issues, so you'll just have to play it by ear maybe..

[PMRpro Ambassador in reply to Jayveedee]

Worth a try - but DL is right, it could well be something else. Don't wear blinkers on that aspect.