eg if I twist my leg whilst walking or perhaps have a fall whilst hiking or other activity I might twist my leg and it causes extreme pain in the hip area.
I dont know if this is because I've not been doing my normal activities/exercises or whether this is a common issue with PMR (I have been diagnosed and the pred does help, altho dont make it go away completely!).
Is this a common symptom, and what can I do to mitigate it.
Does this affect both legs/hips or is it just one side? If it’s just one side then it could be other things, not purely PMR
PMR/Pred do make all muscles less resilient, so although you need to exercise, you have to be more careful - less rigorous and preferably no overextending.
As for ..and the pred does help, altho dont make it go away completely!
The Pred only controls the inflammation caused by your underlying illness, so the PMR doesn’t go away (remission) until it is ready to. But if you are still getting pain, then either you are doing too much for the dose you are on and/or your dose is too low for the stage your PMR is at.
Are you saying that if I do more exercise then I may need a higher does of pred? It seems sensible as intense exercise causing muscle damage, and inflamation, which is the muscles rebuilding themselves stronger.
I am a keen cyclist and over the last few weekends have been out doing 70 mile (5 hour) road rides in the hilly Peak District, and feel fine on the bike. Possibly, in the evening/following day I feel more PMR pain than usual. And if I can do this I cant be that bad either I guess!!
I did crash on/off my mountain bike last week and very definitely tweaked my leg and it was excruciatingly painful - in fact still is, but I dont know if that is PMR related as I think I probably dug the end of my saddle into my hip and gave myself a deep muscle injury, altho there is no visible bruising, I cant put any weight on my left leg (the same one with the hip issue), altho it is getting slowly better.
I'm finding it difficult to separate out PMR related issues to non-PMR related issues, although I do have more issues that before PMR was diagnosed (eg sore knee tendons!)
I'm not willing to reduce my exercising as I'm pretty sure it helps in the medium term as I remain mobile and it keeps my weight off, etc, etc.
You have to find a balance that suits you -but also being aware of the fact that as I said previously your muscles do not recover as quickly as they did pre PMR… Neither do you bounce back from injury as quickly -as you discovered with bike crash - sorry to hear that…
But personally I don’t think upping Pred so you can continue your pre PMR level of exercise is not the best way forward. Perhaps you should discuss with your doctors.
I’ve mentioned cycli in this reply -as the name implies he’s also a keen cyclist- and may be able to give advice on best way for you to approach things.
"I'm not willing to reduce my exercising as I'm pretty sure it helps in the medium term "
I heard something similar from cycli when he first joined the forum. Unfortunately it didn't in the longer term - but I'll leave him to tell you his story.
The inflammation of PMR and the damage done in achieving training are different, Increasing the dose of pred to be able to do more exercise is likely to be contraproductive as it slows healing and so may slow the achievement of the training effect, PMR also seems to do that and overdoing exercise may result in the PMR becoming worse, some experts think it can lead to a flare of the underlying autoimmue illness and may even be a trigger for PMR developing.
A major problem in PMR is that the body is unable to signal when you are overdoing it and the result is the development of DOMS in response to less exercise than was the case previously and it taking much longer to resolve afterwards, If you continue to exercise in that period, it may well compound the problem so it becomes chronic.
Hi fast-peddler. It seems others feel I have something to add. It's true that exercise is good. If you check my profile you'll see what type of cyclist I WAS. 2 years on and I can't ride or even walk much. I was totally crippled with the dual PMR and GCA. Continuing cycling then was not a possibility.I was adversley affected by a severe reaction to pred. which very quickly destroyed my muscle and turned to fat. Hopefully you don't have such a severe reaction. Don't overdo the cycling but do keep up resistance training if possible. Overdoing it will cause a flare and upping the pred.so not desirable. all the best.
Pred and PMR make one much more prone to injury and strain of the muscles and ligaments. I didn’t have PMR, just GCA but found the Pred made my musculoskeletals intolerant of repetitive motion and explosive movements. Tendonitis in various places on and off plagued me. On the little information you give the one sidedness and what I call the tweaky nature suggests you’ve hurt yourself. An unhappy ligament in the pelvis/hip area can be quite painful and catch one by surprise. I think you need to speak to someone who can look at your structure holistically like a really good physio, osteopath or doctor who deals with function, not just the inflammatory side. I also wonder, judging from what you have said previously if you are doing way too much while the body is dealing with autoimmune attack.
Like Snazzy I suspect you may have tweaked a hip ligament that may have been inflamed with the PMR. PMR involves the structures around the hip joint and they can remain quite delicate,
you may have a bit of osteo arthritis in that hip and most of the pain is masked by the pred you take for the inflammation. PMR is normally bilateral and pred does an excellent job of giving us back our active lives by dulling the pains to a manageable level, sometimes at higher doses making us feel invincible.
You might find that other pain relief medication would help when you tweak that hip but maybe try not to tweak it. Do you carry a stick on that side, it might prevent the twisting. You could be adding to any injury on that side which is concealed by the pred and which will become more problematic as you taper the dose.
Before diagnosis I had to stop riding horses due to extreme pain in my hip which extended to my knee and foot when in the saddle. I had an injection of synthetic synovial fluid into my hip which didn’t really help, and was told I was too young at 54 for hip replacement surgery. PMR developed at 59, diagnosed at 60, and now at 66 I ride my pony without any pain, thanks to a small dose of prednisolone and a carefully managed lifestyle. But as I taper further I experience some of the old pains in my hands and thumbs which remind me it is ageing and previous damage which are still there alongside the PMR.
"was told I was too young at 54 for hip replacement surgery."
Who told you that? Another lady on an earlier forum was told much the same at 60 by her GP. The advice from the forum was to ask around assorted surgeons. She soon find one locally who did the surgery saying "Age has little to do with it it is need that makes the decision and better to do it earlier while a patient is still relatively fit and mobile than leave it until the are wheelchairbound and unable to do the rehab." And once she was recovered, she was able to reduce the pred, it was as if the hip pain was feeding the PMR.
But your hip pain sounds like mine - bursitis from the PMR.
I was told there is a higher risk of certain materials wearing too fast in women which necessitates a repeat of the surgery later on. I didn’t pursue it at the time.
I've noticed my 'old' hip pain giving me a few twinges lately as I taper down. I was in agony whenever I moved with my right hip, before PMR was diagnosed. Physio was helping a bit, but the steroids sorted it completely. (No arthritis showing on MRI, just inflammation). Now I have to be careful especially when I come through the door. We use the back door which is really narrow and I have to twist slightly to the right when I step through. It results in a yelp of pain. It's remembering to be careful that's difficult!
That sounds a bit like me. Though my PMR was undiagnosed for such a long time and I have always had a bit of hypermobility in my hips anyway, plus I get the pyriformis problem on and off. Difficult to tell what is causing what for me, or when it all really started. Though successive physios have told me that I have weak core muscles and certainly using the resistance machines that focus on the core in the gym helped a lot and swimming gives me a lot of relief too. I think I must have a bit of a strange body, as I have a very long history of musculoskeletal problems and it feels like I have always had a mild version of PMR most of my life. I very much doubt that it is the case, although I guess that I could have had an undetected auto immune condition, though no idea what.
I have been used to watching how I place my body for so long to avoid injury that it is second nature now. I am very careful about posture, how I sit and sleep, and take care to place feet and knees so that everything moves in the plane that it is designed to move, and to keep my spine correctly aligned. I've had endless physio and osteopathy to help me with that, but really weight training is what helped me most. Though I have lapsed the last couple of years as the exhaustion from the PMR caught up with me.
When you sit, you don't drop one hip and allow the knee to fall to the side, do you? I developed that habit for a while and I had exactly the problem you describe. It made me yelp too. Also, be careful what shoes you wear. I am sure that you must have decent hiking boots, but I would make sure that your foot wear has supportive soles that track your feet correctly, even around the house. My physio was quite clear about that.
In reality, I don't think that you will get proper answers unless you can get a full assessment from a good physio and possibly hip x rays, or a musculo skeletal specialist. I've found out that sports physios have helped me most as they seem to be a bit more clued up and the assessment has always been a bit more forensic in approach (if that's the right word) than if you go to see a physio who works in a rehab setting. Certainly it was physios in my early 40s who told me that I needed to see a rheumatologist and clearly they suspected something weird going on back then. Sadly, I never managed to get anyone to take me seriously until the end of last year when I burst into tears at the nurse when having my asthma check and the whole tangled story spilled out about how ill I felt. She spoke to the doctor and he called me a few hours later and that's where my PMR story began. If it wasn't for those two, I would still be floundering around wondering what the hell was wrong with me and blaming my mental health for feeling like crap all the time.
Hi Fast-peddler. Some days since you have been offered excellent advice and comment to your questions and concerns. Forgive me if I'm too forward or wrong, but it seems you will continue to push hard. I hope it works for you but it hasn't for me and others here. if you find your way through this without consequences I would love to hear from you.
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