Flare or just weird? : Just starting slow taper... - PMRGCAuk

PMRGCAuk

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Flare or just weird?

Oshmar profile image
32 Replies

Just starting slow taper from 9mg to 8 mg, also had a far too busy week but awful one sided pain in lower back, groin, above knee and in ankle. Enough to make me get up and be really mournful in the night.

I know pmr is normally bilateral but this is very much pmr type pain. Any thoughts or suggestions? Thank you as ever 🙏

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Oshmar profile image
Oshmar
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32 Replies
SnazzyD profile image
SnazzyD

What did you do in your busy week? Could this be a strain of some sort that has had a knock on effect?

Oshmar profile image
Oshmar in reply toSnazzyD

Very busy, draining week-end last weekend,with active grandchildren and travelling. Followed by very little downtime and quite an intense working week ( I am a tutor, lots of it online) so obviously I’d forgotten I’m not invincible. Thank you for asking the obvious question x

PMRpro profile image
PMRproAmbassador

What were you up to last week? A bit of a back injury sounds possible to me. PMR can be one sided at first - but tends to have a slower onset. Sudden onset suggests some sort of damage.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As SnazzyD has asked , did you do anything over the weekend that could account for issues?

As you say, PMR is usually bilateral, but it can start on one side and then carry over to other side… so don’t rule it out completely. However the back doesn't sound typically PMR unless that was one of your original symptoms… was it?

Oshmar profile image
Oshmar in reply toDorsetLady

Thank you. No, back not an original symptom, groin pain was. Did a lot of standing yesterday…. Aha !

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toOshmar

Maybe that’s it then…plenty of rest and TLC required to see if that helps initially… but do monitor things in case it does develop into a flare.

PMRpro profile image
PMRproAmbassador in reply toOshmar

Standing tends to really go for my back!!! Main reason I get airport assistance - so I don't have to stand in queues!!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Snap..and not GCA/PMR related…

SnazzyD profile image
SnazzyD in reply toOshmar

Standing can be ruinous. Throw in different shoes, the wrong shoes, poor posture (most of us have some sort of wonkiness), a previous strain from another day, cold, uneven ground, bags, etc etc and you have the perfect cocktail for trouble.

arvine profile image
arvine in reply toOshmar

Curious not aware groin pain part of symptons of pmr been told is csused from osteoarthritis in hip, and or trapped femoral nerve, just have been under impression stiffness pain in shoulders, hips were original pmr symptons, ?

proactive profile image
proactive in reply toarvine

Groin pain was my most annoying PMR symptom before I was diagnosed. Had to take baby steps downstairs, etc.

Oshmar profile image
Oshmar in reply toproactive

Definitely, Proactive, mine too. Its always the marker for tapering too quickly. I call it my horse riding pain (not that I horse ride any more) closely followed by my high hedge trimming pain along the shoulder girdle. Thanks for your response

Oshmar profile image
Oshmar in reply toarvine

I think everyones PMR presents slightly differently. Definitely groin pain and shoulder pain for me, nothing bony at all. So hard to describe to other people.

PMRpro profile image
PMRproAmbassador in reply toarvine

Groin pain may be due to iliopsoas bursitis and that is often part of PMR. It has also been discussed quite often on the forum. It may sound like blowing our own trumpets, but the habit of reading other people's posts on a regular basis does often answer many of the questions someone might ask themselves - plus a lot they didn't know they needed to ask!

Oshmar profile image
Oshmar in reply toPMRpro

Well there’s a thing… very good point PMRpro sounds just like that. I thought I read most posts but evidently that has passed me by!

PMRpro profile image
PMRproAmbassador in reply toOshmar

The comment wasn't actually aimed at you but someone who often claims not to have heard of things that come up on an almost daily basis 😜

Oshmar profile image
Oshmar in reply toPMRpro

Totally valid point anyway as I hadn’t heard of this and it sounds exactly what I was trying to describe 👏🏽

PMRpro profile image
PMRproAmbassador in reply toOshmar

Always post and ask if something stumps you!! Someone will have been there before ...

I really thought I was heading for a hip replacement because the groin pain was excruciating - greater trochanteric pain syndrome can cover a LOT!!!

Oshmar profile image
Oshmar in reply toPMRpro

Wow, that’s an impressive sounding condition!

PMRpro profile image
PMRproAmbassador in reply toOshmar

Can have impressive effects too! It used to be called trochanteric bursitis - this just admits it is rather more far-reaching than that!!

Oshmar profile image
Oshmar in reply toPMRpro

Just a ps follow up on the iliopsoas bursitis, do we view it as a sometime add on to pmr and do painkillers for relief rather than more pred needed?

PMRpro profile image
PMRproAmbassador in reply toOshmar

It can happen on its own or it can be part of PMR. More systemic pred may help but more targeted treatment with injections may be better. There are also stretches that help and also help prevent recurrence. The trouble is, when PMR is feeding the bursitis - any of them - it makes it harder to get it calmed down. There are several stretches that might help - piriformis tightness doesn't help either.

hipkneeinfo.org/wp-content/...

Oshmar profile image
Oshmar in reply toPMRpro

As ever, PMRpro, this is incredibly helpful. Thank you.👍

arvine profile image
arvine in reply toPMRpro

Most confusing hard to determine disease, seems any pain from, back pain to shoulder, hip, wrists, ankles , leg pain often diagnosed as pmr, and inflammation markers often not raised, diagnoses based on symptons, I now havevall these symptons but scans, Mri s , exrays and ultrasounds have determined spinal stenosis, degenerative disk disease, budging disks, trapped femoral nerve (caused stabbing pain in right thigh) and osteoarthritis has shown up in these tests, same as hip and even hands, shoulders being tested ultrasound exrays showed calcification, so with all of these results rheumy has determined pmr not the cause for my pain, and consequently wants me to get off prednisone,

Oshmar profile image
Oshmar in reply toarvine

That sounds like an unpleasant cocktail. In my case instant and immediate response to pred was a clincher. Mobility within hours of first dose.

sidra1968 profile image
sidra1968

I kind of have the same thing going on after a very busy week of running an estate sale and sitting in a "bad" chair. My glutes and back of my thigh (mostly on the left) hurts something awful and it's been a month now., so it isn't a strain since that would've gotten better by now. I guess what I am saying is I think our busy weeks triggered a flare, and my PMR has mostly been more unilateral.

Oshmar profile image
Oshmar in reply tosidra1968

Thank you Sidra, exactly how I'm feeling. Really appreciate you taking the time to comment. Hope yours eases soon.

sidra1968 profile image
sidra1968 in reply toOshmar

Thanks..normally I would up my pred..but I see the rheumy in 10 days and do not want my bloodwork to be masked by even more pred maybe? It is livable for now, really hurts when I bend down so I am just taking it easy. It also seems to have moved downward (more to the of back of thigh) a bit, which again..for me is kind of how these things go, they move around. Eventually they go away, thank goodness. At least I have experience now with all of these strange symptoms PMR can present, and don't worry near as much. Hope you feel better soon!

PMRpro profile image
PMRproAmbassador in reply tosidra1968

When you say they move around, do you mean to different joints?

sidra1968 profile image
sidra1968 in reply toPMRpro

No, more like I have had different areas hurt at different times. Started with the neck and right flank/hip -went away quickly with the Pred. Then when I was working again (before I tore the rotator cuff), I had a bout of really bad mid-back pain (more on left)..now after that Estate Sale and 2 days in a bad chair, I have what one would assume to be DOMS, but it has lasted a month now. I seem to irritate an area and then it "flares". Hope that description of it helps.

That is why I think it could be the Myofascial pain Syndrome type of thing going on.

sidra1968 profile image
sidra1968 in reply toPMRpro

Also, as it goes along, the pain seems to move along said muscle. Like today my glutes are fine, but the top of the hamstring is quite sore. Really weird.

PMRpro profile image
PMRproAmbassador in reply tosidra1968

Certainly is!!

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