I’m a 73yr old woman who has had PMR for nearly three years. I started at 15mg of Pred reducing slowly so that I’m now on 1.5mg. My doctor tells me this is a marathon not a sprint! However I now have very stiff shoulders and neck not to mention heavy legs and stiff hand particularly when I awake. I went to the physio last week and she was amazed how ‘solid’ my neck and shoulder region was. I came out feeling a certain release but now it’s back to how it was. Does this sound like PMR flare or some sort of arthritis. My blood levels have always been normal right from the start. In a way I wish they weren’t as I would at least know I definitely had something wrong with me. I’m wondering whether to continue with physio or go up to 5mg but I assume that does can mask arthritis too? Would be grateful for any thoughts. I am a fairly active person who enjoyed Pilates and walked fairly long distances but no longer!
does physio help: I’m a 73yr old woman who has had... - PMRGCAuk
does physio help
You need to know what they meant by “solid”. Muscular or something else? It is easy to end up in poor shape due to deconditioning followed by poor postural habits and it is a slow fix. The physio can do things for you but you then have to keep up the good work at home to strengthen and re-educate the body back into full range of motion. Have you been given interim exercises? Personally I have preferred to go to a gentle (!) osteopath.
Does actually feel like your old PMR other than morning issues? It might be worth asking the GP if it is worth trying an increased dose to see if it helps. They seem like one of the more educated ones who know it is a marathon and not a sprint!
If they mean the muscles are "solid" in terms of being hard and in spasm, then a good physio is probably more use than more pred. Part of PMR can be a tendency to myofascial pain syndrome which leads to trigger points of inflamed and hardened muscle fibres in large muscles - especially shoulders and back. It takes a lot of oral pred to help, injections into trigger points are far more effective but good hands on physio is also very successful and what sorted my back out. Once the muscles are no longer in spasm, you can work on them to strengthen them to reduce the risk of repeats.
I can't speak medically but if you have stiff muscles then I would consider a sports massage but ask them to be gentle. Some physios are very hands on but others not. Before I was diagnosed with PMR I thought I had stiff muscles and massage definitely gave me relief.
More recently I've been having acupuncture and I also found that relieved symptoms as they've worked on getting the energy / blood flowing.
Yoga is another thing to try - chair yoga if you can't get to a mat or there are a lot of standing yoga videos. The breath work is the important bit as connected to movement gets energy flowing. Might be worth a try.
Thank you for that I have a very hands on physio who is well aware of my problem do think I will gently carry on with that. I have always done Pilates but added yoga as well but now I can’t do some of the movements so think I will try chair yoga as you suggest. Many thanks for you comments all so helpful
that’s really interesting so you didn’t have elevated blood markers at any point but did they diagnose you with polymyalgia rheumatica? I ask because I’m in a similar position. My blood markers were never elevated. They’re treating me as though I have PMR however after three years, I have not been able to taper, the prednisolone. It looks like mine might be some sort of autoimmune or mitochondrial muck up. So seeing your post, I wondered if there is such a thing as PMR without elevated CK elevated other markers.
The reason they diagnosed PMR was because the Pred made such a difference. I have managed to gradually taper but I’m abit stuck now. I have asked my Dr if she thinks I really do have PMR and she is pretty certain it is but it would be good to have raised markers to confirm! Also paracetamol has no effect at all. Hope you get sorted in due course.
CK should not be elevated in PMR as it doesn't destroy muscle. It is used to distinguish between PMR and forms of myositis where the CK is raised. If CK is raised - it almost certainly isn't due to PMR.
I never had raised markers and it has lasted a long time - 5 years with no remission even before diagnosis! I've been on pred for over 15 years. Difficult now to say if it has gone as I am totally stable on bi-weekly Actemra injections plus 7mg oral pred but trying to lower the pred further to 6mg results in a return of bicep tendinitis pain after a few weeks which is very disabling.
Before getting to actemra had you been through various DMARDs? Would be interested in your journey. How you got to actemra + pred
I had tried methotrexate some time ago - must have been about 4 years earlier - but after a month I was so fatigued I could barely put one foot in front of the other and stopped to go to an international meeting. By the time I got back I was starting to feel human again and we agreed I wouldn't start again. I developed "pred effects" I'd never experienced before, gained weight even. I offered to try leflunomide because my need for pred was increasing and it was getting concerning, even by my standards. But my rheumy said no, straight to what was most likely to work. But I'm in Italy and he has quite a bit of freedom.
its really tough isn't it. I hope you can continue your progress too
Probably you have gone a bit lower than you need and your PMR hasn't totally gone. Try going back to 2mg and see if that helps
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