Flare or not?

[Jantayl]

Diagnosed 7 years ago with PMR. Now down to 2.5mg slowly Sept/Oct 2024 then November onwards. Late November developed left back pain travelling down thigh. CRP December was 1.9 so ruled out flare. Saw GP in December and given some exercises. Still unable to walk because of pain and seizing in lower back when rising in morning 5/6am - then eases slightly and by 8am I can move freely. Is this PMR related and should I increase the Prenisilone? I take this at 7am. Saw GP again early January 2025 - suggested I take amitripylene but find this no help. I have also had back X-ray but no result yet. Your thoughts and advice much appreciated.

[SnazzyD]

Sorry, here are a load of questions to try to clear the fog. When you say you can’t walk, do you mean you literally can’t weight bear or you can’t walk comfortably? It isn’t certain whether it is the Pred helping or just the act of moving about in the morning.

The back x-ray result would be very useful. Any idea when the results are available? If the GP gave you exercises, they must have had a theory of diagnosis to know what they were targeting. Any idea what it was and also what exercises were they? Presumably, you don’t think they helped. Did you do them and for how long?

Pain going down the leg suggests some sciatic nerve involvement but what it is being irritated by can be spine or muscle related. Was the GP dead against trying say 5mg Pred?

[Jantayl in reply to SnazzyD]

Thank you for quick reply. I walk with difficulty, slowly and with pain. I have to to get to the toilet. Trying to sit and stand pain shoots down my left thigh. 1st GP thought may be sciatica but to come back in 6 weeks if did not improve - I did this. As I have no other symptoms as I did when first diagnosed ie arm and shoulder stiffness GP did not think it is PMR related. I am just not so sure as the pain eases and I am able to bend and do household chores without pain. I am waiting to talk to GP again re Xray result which should be back. I have also had tel appt with rheumatology nurse on Friday. I really don’t want to increase the pred as I have taken 7 years to get to this point…but just wonder if it would help. I did manage a 2 mile walk yesterday OK …. But not sure if this helps. Sorry my head is all over the place at the moment.

[PMRpro Ambassador]

I'd ask the same things as Snazzy.

I don't have sciatic nerve involvements but otherwise similar symptoms were due to an inflamed sacroiliac joint and lower back muscle spasm. Getting from sitting to standing from bed in the morning was scream-out-loud excruciating! The Pain Clinic was useless!

Eventually, a spinal x-ray showed a spinal compression fracture - though none had been visible on one at the time the back pain had started - and my rheumy did 3 things: he ordered a zolendronic acid infusion because of the spinal fracture, gave me an ultrasound guided steroid injection in the region of the SI joint and then, a few months later, 2 more steroid injections, one in the trochanteric bursa and one in the back muscle just below the waist on the affected side. Since then I have had almost no pain and what I have is managed with 1x500mg paracetamol.

The pain improved steadily after the infusion - we have no idea why that should be! And it is a fact that most back muscle spasm is in response to damaged vertebrae.

[Jantayl in reply to PMRpro]

thank you for replying . Your experience with the pain is very similar. I shall discuss again with my GP. I sometimes wondered if it is MS related - my head is all over the place.

[DorsetLady PMRGCAuk volunteer]

Others have replied about back - but ‘head all over the place’ could be due to adrenals stuttering.

If you can manage a 2 mile walk, then there’s not too much wrong 😊

[PMRnewbie2017]

I think I'm correct in saying that PMR pain is always bilateral. Doesn't Prof Dasgupta use this as one of the factors for differential diagnosis?

[PMRpro Ambassador in reply to PMRnewbie2017]

Nearly always - it can start on one side before the other side joins in which can be confusing. It has a habit of seeking out weak spots.