Can anyone point me in the direction of any studies done on muscle recovery after PMR?
I have been off pred now since October, but am suffering terribly with a rotator cuff problem which is making no attempt to recover. The physio gives me strengthening exercises which so far have only seemed to make things worse and I now have tendonitis in my upper arm and pain across my upper back and neck. I complete the exercises on both sides, but neither side seems to be gaining any strength. Legs and hips are no problem and my fitness is otherwise good. Physio has now referred me to MSK and hope I will get the scan/x ray I have been requesting.
Is there still some PMR lurking around or does the body recover in a different way now?
Any insights gratefully received xxx
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artisam
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I’d be interested in any answers about this. I’ve lost so much muscle that when I look at our gel my legs, they don’t feel like mine any more! I also know from my past, just how hard to have you work to gain any muscle. X
It is hoped that a study will be set up in the near future but don't hold your breath waiting for results as it is likely to be some years before meaningful results are available.
It is possible - Skinnyjonny's story shows that, He was in a wheelchair when PMR was diagnosed but shortly before Covid he nearly got to the top of Anna Purna IV and it was the weather that beat him, not PMR.
I don't know why but I hadn't come across Skinnyjonny's 'story' before, so I've just taken a look and been reading his posts. Wow! What an incredible story it is. I know he was younger than me when he received his diagnosis but even taking that into consideration...he's achieved so much in terms of his recovery. Gives me hope and makes me feel more excited for the future........not that I'm ever expecting to reach the summit of Anapurna though! Haha! 😄
As PMR pro says we are looking into this area and a study research project is being worked on. Too little is known especially drug dose in relation to an individuals unique response and the way dosage is monitored and effective. Resistance exercise is always advised but as of now no one has monitored our ability to do so under differing conditions without causing a worsening of our condition or a flare. The myopathy that is due to pred. and differs radical from person to person hasn't been monitored nor the drugs effect of reducing oxygen and nutrient uptake by the muscles. All this is being considered alongside a way to exercise and monitor, so you can see there is much to consider and deliver. When we think we have a handle on the best approach we can move forward Until then we are all in the same situation doing what we can when we can on our own or with best advice. Stay strong and hopeful.
Wow! Thanks for the reply - not the best outlook is it. Time will tell I guess.
I don’t intend to give up and will persevere. I am keeping things very gentle with resistance bands and very light weight. My question rose from the fact that exercises I could do one week escaped me the next - the lack of progress is frustrating but also worrying. I have taken up yoga, walk every day and have introduced some very light running. The rest I am just going to have to be patient and let things heal in their own good time.
Oh yes, I’m going very slowly. I’ve learnt my lesson from past exploits!! Physio exercises are done 4 times a week and although I walk every day, I only add the minimum of running ( blink and you’d miss it , honestly!)
Just a quick chime in for what it is worth. I tore and repaired left and righ rotator cuff intra and supraspinatus tears) years apart (from a hiking fall and just wear and tear). The surgery In the US they make you go for physical therapy (which did nothing at all for me after 6 weeks). My pain was always there if I tried to raise my arm, hook my bra in the back or even lie on my back in bed. The surgery is a long recovery and you must follow the instructions to a "T". But I am ever so grateful I went through them, as 15 years later at 71 and now diagnosed with PMR, it is behind me. But guess where the PMR likes to hit me? In the shoulders - not like when I had the tears, but soreness. I started at 20 mgs. pred in Dec. and moved slowly to 12.5 mgs and so far, so good. Still easily fatigued, but doing all I can to maintain the little muscle I had left from the Pandemic and lack of gym. Anyway, my point is, get the MRI, find out what is broken and/or fixable. I could not get anywhere with muscle gain prior to the rotator cuff surgery, as it hurt . I have lost considerable muscle through the PMR, but I am regaining it in the arms. It just takes a lot of work (but not too much as everyone has stated). I was so athletic and had great muscle tone and thought I would still have it even at this age. I am not patient but I am trying to be gentle to myself as this disease is tough - mentally and physically. I am not sure how surgery works with PMR. I hope a doctor can help to advise you what is best, as it is hard enough trying to navigate PRM. I sincerely wish you the best, and a successful visit to learn what is wrong with your shoulder.
Thankyou so much for your reply, it really confirms what I have been feeling , that I need to get a proper scan to see the underlying cause of the pain. All along I have been worried that if the diagnosis is wrong I could be doing myself more harm. Hopefully, this next lot of ‘experts’ will listen!
Wishing you well through your PMR journey and beyond xx
Hi Artisam, yes, shoulders are difficult! I was off pred briefly in December, but the shoulder pain crept back, getting steadily worse. I went back to 4, 3 and am now on 2. All OK, but if I do any slight extra exercise with shoulders they don't like it. I did a stretching exercise in yoga yesterday and my right shoulder is hurting today! Maybe there is some pmr inflammation still in your shoulders. It would not like exercise bands!
thank you for your reply. Shoulders are indeed a ‘pain’! You are right about exercise bands, my shoulders really don’t like them. Much better with stretching, massage and light weights. I was told I could stay on 1/2mg of pred if I felt it helped, but chose to come off them as there was apparently no active PMR anymore. Reluctant to go back as I think it masks other problems which are then not treated. Hoping I will get some sort of scan soon to confirm or not what is wrong.
I have wondered about that, but my concern is that the pred masked the injury in the first place and I worry about injuring my shoulder further if there is no pain to warn me. It’s a tricky dilemma
I tend to agree with that. The NHS gave me a set of sessions with a physio last year. Aim to deal with a torn shoulder tendon and tendonitis in various areas. Everything seemed positive to start with but then the pain got worse. I suspect that the pred either stopped me realizing that I was doing damage or hindered the muscle healing and development process. I have just been made to stop the pred by my Rheumatologist. Like you I will try to work out whether that makes any difference?
Hi Pro, how can one tell if there is still active Pmr or if it's injury or old age or something else? Is there a test? Or is the blood test for Crp the only thing?
Experience really. Though PMR that is still active at a really low level will tend to build up slowly and get worse. The other things will tend to remain much the same. But if 1mg pred makes you feel noticeably better, I'd want to take it!
Morning Artisam, I will share my experience with you. I was diagnosed with rotator cuff as well. I was given exercises like you, it only made things worse and some of the exercises were too painful for me to do. I also suffer pain in my upper back and neck. I insisted on an x-ray, resulting in discovering that I have osteoarthritis in that shoulder. I hope your x-ray reveals an answer for you. I have been given exercises for the osteoarthritis and they are helping. I empathize with you. Take care and all the best.
I had a similar experience. I was also having pain in my shoulders and neck, I ended up having adhesive capsulitis plus calcifications and other neck problems. In my experience exercising just makes it worse. Only a few controlled exercises to mantain movility and a lot of physiotherapy.. My physio said AFTER I get better I can start with strengthening exercises, with a trainer, not by myself.
Crikey! You see this is the problem - I don’t think anyone really knows what my issue really is. The physios have all been students or newly qualified and just follow the script! At least now they’ve run out of ideas and have passed me on. Hope you are recovering well now
I’ve also tried physio, strenghtenng exercises etc but feel worse. Taken a break and tried to relax more to rest my muscles, It’s working for me, a lot less pain so plan to start training again but not too much too soon.
There’s definitely a pattern emerging here. I find if I rest completely,I get very stiff and the pain worsens. Just moving helps the most so I try to keep busy and try to avoid the call of my book! It really is a puzzle isn’t it?
Take care, thank you for your reply
I'm still on the downward pred journey after a big flare and currently at 7.5mg but almost at 7.0mg. So far so good and I feel ok.
I've trained with weights on and off for more than 40 years (I'm 63 this month) and in the last year and a half have lost around 5kg of muscle mass thanks to PMR. I have the same rotator cuff issues as you, particularly in my left shoulder, and was off the weights completely for almost 8 months since last July.
I started very light - and I do mean VERY light - training again just three weeks ago and am carefully monitoring myself for any sign of PMR pain returning, in which case I will stop again immediately. I am currently doing a light session on the weights once every three-four days to leave plenty of recovery time in between workouts and suggest you do the same as one day in between sessions is no longer enough recovery time for us.
For every single session I make sure the shoulders are completely warmed up and pain free before I start any proper lifting, and that's regardless of whatever body part I'm targeting - always loosen the shoulders as they are engaged to some extent for every upper body exercise you do, and also for some lower body stuff like deadlifts for example..
I can recommend you try front raises, lateral raises, and bent over lateral raises to loosen your shoulders off before trying to exercise or as a stand alone workout in itself. These three exercises target each of the front, middle, and rear part of your shoulder muscle group and should also work to strengthen them a bit over time. Do 10-15 reps for each exercise over three sets (if you can manage it) and your shoulders should hopefully loosen off nicely. If you feel fit and strong enough, go to five sets. You don't need to do it with any weights, just the weight of your arms is enough at the start, but if you feel strong enough you could maybe carefully try it with a very light weight - like a pair of shoes or a tin of beans in each hand for example. If you're not sure about the exercises, look on youtube, that's probably the best place to see how they should be done.
When doing these exercises there are two types of pain to look out for, one of which is good and the other bad. You know what the bad one feels like already but the good one is more like a feeling of genuine muscle fatigue through use and should be easily discenible from the bad PMR type of pain.
Try also placing a hot water bottle to your shoulders before exercising which will help with blood flow and have a positive warming up effect on them.
I hope this helps and I wish you luck. If I can help further just ask. 😊👍
Incidentally - there exists a very strange phenomenon I have noticed over the last few weeks. If I do an exercise without any weight at all I sometimes feel it to be painful in the PMR type of pain, but if I add a bit of weight and do the same exercise again the PMR pain dissipates somewhat. I find this very strange but it's definitely a real thing and not my imagination... wierd huh...🤔
What a great reply, thank you. These are some of the exercises I do, but not first and with not that amount of recovery time. I will try out your suggestions, taking it VERY SLOWLY! I am very impatient to be well again and I think this is part of my problem.
Ha, yes, impatience is the downfall of us all. It was what brought on my flare last year and resulted not only in keeping me out of the gym for so long, but also forced me to increase my pred dose back up to 12mg and more or less start the entire reduction process all over again. As others have said, it's a whole new normal for us now ( as much as I dislike that particular expression) and we have to adapt accordingly or suffer the consequences.
They charge extra at the gym for using the Power-plate! I used to use the many years ago but had forgotten all about them. Something to consider, thank you
Because I am on oxygen 24 seven I needed Pulmonary Rehab to improve the efficiency of my muscles. While on 8 1/2 mg of prednisone I did nine weeks of Pulmonary Rehab . It has definitely helped my muscles and my condition. They start out with gentle stretches, then specific upper body and lower body movements, then, free weights, then cardio. Cardio was, the treadmill, stationary, bike, or NuStep. This was over a two hour period with rest periods in between 2x a week.. I was given papers with exercises I could do at home along the same lines. I definitely got stronger and I’m breathing much better. My issue now is coming off prednisone. I have not had any PMR pain in couple years already but an intervening asthma exacerbation with of high dose of steroids got me started on the taper all over again and I am 80 years old. I dare not wait until the taper was over to start exercising. It was a period of time when I felt like cellophane; I was walking like a penguin so I believe it’s the gentle total body conditioning that’s needed.
Suggest looking for exercises for seniors online start 2x a week and go from there.
I'm trying to regain my strength and fitness I had before PMR and Prednisone but its a slow go...strength is way down from what it was, I worked out fairly often before pmr and now the muscle is not coming back very fast...been off prednisone at least two year with a couple of times going back for a very short dose when I felt a flair or whatever it was...prednisone works wonders for aches and pains and inflammation but doesn't do much for muscle retention...keep at it...eat well, which I try to do but honestly don't!!! and work out and walk as much as is comfortable...dont over do anything...
Thank you - it definitely seems like it’s going to be a long road. The positive side is I have energy and daily walks are no issue (I am a voluntary dog walker, so that gives me the impetus to get out each day). I hate my lack of muscle tone and the lack of arm strength can be a real nuisance at times, but I’ll keep going and eventually….💪🏻!
Like I said before and needs repeating. Pred. wastes muscle. It appears to inhibit muscle take up of nutrients from our diet. Any sign of PMR and or GCA limit the oxygen flow to the muscle preventing it working properly.. At worst it contracts muscle so any stretching or exercise makes it worse because the muscle simply cannot work properly or at all. This is precisely what our project is designed to investigate incorporating how levels of dosage affect the process of exercise, muscle rebuilding and response of the muscle fibre to this combination.
I wonder how long the effects of pred work on the body after you have stopped taking it. I came off it in October and my general cardio fitness improves every day. Leg muscles are strong and I can walk, cycle and run (a bit) and have good flexibility for yoga (apart from the shoulders that is) It is the upper half that doesn’t work. It’s seems odd that one half recovers and the other doesn’t. Of course there is probably injury and maybe other issues to consider. I am very interested in the ‘science’ - I will be interested to hear what the next medic has to say on this matter when I see one.
My son suggested Collegan supplement for my muscles. I have been taking the powder for 8 weeks and it does seem to help. My walking is still difficult but I thinknInsee a bit of improvement. I was diagnosed with PMR in Jan. 2019. Was on Prednisone for 11 months. I was successful in tapering. My weak legs have been a problem.
Interesting. There’s a lot of argument over whether supplements such as collegan can be absorbed by the body, but hey if it works for you don’t knock it. The cost tends to put me off!!
Why only on pred for 11 months - doesn’t sound as if your PMR has gone.
My Rheumatologist at Marshfield Clinic, in Wisconsin, was excellent. He started me at 20 mg of Prednisone. The awful,pain stopped immediately. He guided me throughout the 11 months. My main complaints after was weak muscles and extreme fatigue. I learned to rest at every chance. I cut back on everything. Learned to say NO!…..walked funny, still do. I pay about $38 for a months supply of Collegan powder at Walmart. I take it in my morning coffee…no taste.
I'm very interested to read all your comments. My problem, like that of Gary1310, is that of weak legs; although I have several vigorous walks each week, I don't find that they have improved at all; I too was diagnosed in 2019 and have just managed to get down to 1.5 mg. pred. Does anyone follow a particular diet which might improve muscle weakness?
I try to include lots of protein…eggs, meat, whole milk. Take a range of supplements. Started Collegan 8 weeks ago….thinking it helps my muscles…quit Lipitor!
I agree with Gary and PMR pro. You need to ingest more than the recommended amount of protein because the pred. appears to inhibit the uptake into the muscle and much passes straight through without proper breakdown and absorption. We can't be sure and that's why we are including it in the study research program.
Hello, I came off steriods in 2018 and I too had the same problem of a rotary cuff giving me pain and not wanting to play the game, I was referred to a Rheumatologist who fortunately had experience with PMR. He recommended a guided steriod injection into my shoulder, which cured the problem.
That too was my rheumatologist’s parting shot (ha ha) before he signed me off. It eased the pain for a while, but was very short lived. Guess I was unlucky
The rotary cuff is the main muscle to lift the arm high. The pain could be not damage but the rearing of PMR which would be indicated by pain trying to lift the arm and related to contraction of muscle due to lack of oxygen preventing the muscle from working properly. The steroid injection would therefore have worked due to PMR active and when pain returned the wearing off of steroid effect. Rotator cuff isn't the only muscle group involved as mine has snapped years ago from a cycling incident and after an operation to reattach it failed I learnt to use other groups to lift the arm normally. Not quite as strog but total mobility and use.
there was no inflammation present when I had the injection only a thickened tendon. I don’t think the rheumatologist was totally convinced it was an injury, but had already been trumped by a very senior colleague. He was also very keen to have me off the steroids.
I'm talking about inflammation of blood not the muscle artisam. If PMR is rearing its head then pred. will have worked but now worn off. Maybe that's why you had relief and it is now back.
How are things progressing? For me after back xray, blood tests, heart check up and adjustment to medication I'm still in pain from muscle, bursitis, or something else. After all the analysis and thinking I do it still leaves me baffled at whatnis causing what. There are no simple answers and we cannot work our way through what we can't pin down however well informed we are. It seems to me that a gradually or rapidly deteriorating situation sometimes enhanced by medication or inability to exercise properly just adds to the frustration. If I can sort this back issue then there will be some progress so it's just a matter of being patient and tolerating it until it hopefully passes. There's always hope.
Oh how true - not being to able to pin down that cause is key. I’ve been referred back to MSK so I can get a scan/X-ray, but have to wait for the call - who knows when that will be. Meanwhile I’ve had a couple of nights of all over pain, so maybe my PMR is not quite in remission as was thought. Will wait to see how things go then call the GP. The weather isn’t helping - I’m always worse if I haven’t been able to get out walking and the forecast is for incessant rain for the rest of time it seems!😩
Have you tried osteopathy or chiropractic? I’ve even considered acupuncture! Cost is the problem, just out of my league at the moment. Keep going, there’s an answer somewhere
check my profile you'll see I know about them but not sure they'll improve this. spent 40 years with very talented and good osteopath. I saw it as planned maintenance and put the cost through my company as tool maintenance as I couldn't make furniture if my body didn't work.
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