I have been struggling away with shoulder issues for a couple of months now and find it is really getting me down. After my initial pmr diagnosis back in April I reduced too quickly and suffered the inevitable flare. Back to 17mg in Septemebr and on the gradual reduction now. All pretty good until severe shoulder pain in right shoulder spreading to left shoulder. Easing very gradually after a steroid injection when I saw rheumatologist at end of November. Follow up appointment isn't until September 2017 so I don't really know what I should do now. Is the shoulder pain caused by being on pred or is the inflammation from the pmr attacking my shoulder joints? I'm at a loss to work out how to progress from here. Does anyone get regular steroid injections in their shoulders and if so is it done at the GPs?
I feel the other pmr pain is responding well to the gradual reduction but it's amazing how debilitating shoulder and arm pain is and I need to find a way to improve things or aid my recovery. I don't think I quite understand what causes what, bit chicken and egg!!
Happy New Year to you all.
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Lochy
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Lochy, you haven't said at what dose you are at present, but I'm wondering whether you may have reduced too far, passing the dose that is needed to keep the inflammation under control for the time being. Flares in the inflammation can be quite common in the first 12-18 months of treatment anyway, so it is quite early days into the treatment for you.
On the other hand, it is possible for the steroids to soften and weaken the tendons and ligaments around the shoulder joint resulting in rotator cuff syndrome which can be dealt with by a good physio. However, this is more likely to occur after long term use of steroids than in the shorter term.
Have you by any chance been doing any heavy lifting or moving of heavy objects? With PMR, our muscles will rebel in such cases as they are weakened and will take longer to recover than pre-PMR.
If you can let us know what dose you are on at present and how quickly you are reducing, we may be able to help further.
Hi Celtic, I'm currently following the very slow method and am on 15mg one day followed by 16mg for five days and so on.
I have been seeing a physio but find i have to take it very slowly. What I used to call exercise or using my muscles bears no relation to what I can now tolerate and that is part of the problem perhaps! I happily golfed pain free through the summer but now worry that I injured myself and only felt it as I reduced. Having said that, even after going back up to 17.5mg from 12.5mg as the flare took hold the shoulders didn't improve. I'm so reluctant to increase my dose, mainly because I want to get down psychologically! Perhaps I should give 20mg a try, which was my starting dose last April, and see if the shoulder pain goes away.
I do worry that the pred disguises injuries we maybe causing ourselves as we exercise. Exercise has been such an integral part of my life I'm struggling without it! Also thinking about requesting an ultrasound of my shoulders to see if there is any physiological damage.
Ahh! Lochy, now that you have provided some further information, you have really answered the question regarding your shoulder pain. You may well have been able to continue golfing at the high starting dose but then as you reduced from that dose whilst continuing with your golfing, the inflammation took hold again, the new dose being insufficient to keep it under control.
We do have to help ourselves if we want to kick this disease into touch, and adapt our lifestyle to suit.
It is important to remember that the steroids are not curing anything, they are just damping down the inflammation whilst the disease takes its course - PMR comes when it wants to and goes when it wants to.
During my years on steroids for both PMR and GCA, as I improved I followed a rule that if I was about to have a busy day on one day I would say "No" to anything that cropped up either the day before or the day after.
Do be kind to yourself. The more exercise you take, the more steroids you will need whereas the whole idea is to get you to the lowest dose of steroids that still controls the inflammation. The whole process should be easier if you give yourself plenty of TLC along the way.
Spending a little time on this rainy day trying to find out why my shoulders have been such a pain (literally and figuratively) for months now, and came across this old thread. Celtic , can you tell me any more about your statement: "On the other hand, it is possible for the steroids to soften and weaken the tendons and ligaments around the shoulder joint resulting in rotator cuff syndrome". I've been getting physio for this for some time now, and although helpful not getting the miracle cure physio has always given me in the past. Is this syndrome likely to be with me forever or will it fade away if and when pred is in my past? I've also developed more chronic back pain and hip pain re-emerging, and I've been feeling it's something to do with weakening muscles despite my efforts to maintain activity levels. This is the dark side of pred.
Oh dear, Heron, what a bummer for you. However, on reading the whole of your post, especially your mention of re-emerging hip and back pain, firstly I am wondering if what you are experiencing is more akin to your present dose not being quite sufficient to keep on top of any lurking inflammation rather than it being purely related to rotator cuff syndrome. Are you someone who had raised markers of inflammation showing in blood tests in the early days? If so, have those tests been repeated of late, although, as you probably already know, such test results can sometimes lag behind re-emerging symptoms.
With regard to your specific question on rotator cuff syndrome, I can do no better than quote from an article that appeared in a PMRGCAuk newsletter a few years ago:
"Some people coming off steroids find that they get pains in their shoulders that are different from their 'PMR pains; this is known as 'rotator cuff syndrome'. The 'rotator cuff' is a group of muscles and their tendons that act to stabilise the shoulder. The shoulder is a really complex joint because it has to move in so many different directions. Unfortunately, long term use of corticosteroids can soften and weaken the tendons and ligaments around the joints, particularly the shoulder. Normally, as we age, these tendons are subject to wear and tear, and so combining age with steroid use makes rotator cuff tears quite common. So when you are reducing your steroid dose it makes sense to increase your level of physical activity gently, as your range of movement increases, and not try to go at exercise like a bull at a gate. If you should be unfortunate enough to have a rotator cuff tear, this may be diagnosed by your GP, or an osteopath. You should be shown how to first develop the range of motion of your arm without pain, and then to build up strength gradually using resistance exercises. If your GP can't help with this, ask to be referred to a physio. It can be a long haul recovering from rotator cuff injury. Just one more reason why we have to look at our intake of steroids as a necessary evil, and be prepared for the unwanted side-effects and after-effects!"
Heron, I hope this helps. But what I would add is that of the people I have come across who have experienced rotator cuff syndrome, they seem to have mostly been affected in one shoulder. Just recently, a member of our support group has been experiencing pain in both shoulders and our very trusted rheumy has diagnosed a return of PMR. Food for thought, especially taking your other painful areas into account. Perhaps an X-ray or scan of your spine might be wise just to rule out any other possible causes in that area. Lots of good luck wishes, Heron.
Thanks. This does not seem to be pred dose related. If it were it would be easy to deal with. I hurt one shoulder winter of 16-17 clearing snow. Was very careful this winter, and much less snow anyway, but nevertheless the other arm has been a pain lately, perhaps because I was too careful with the first arm so I didn't reinjure it! I get sharp pains when moving in certain positions too quickly, not like the pains of PMR at all. And from early days on pred I felt it was taking away my innate strength, such as it is, but that was very subtle. Guess the nearly three years on pred have been taking their toll. Oh well, could be worse. My physiotherapist has been very helpful, but I don't seem able to rebuild strength in the muscles the way one normally would. I've all along been maintaining range of motion despite discomfort because I have no intention of getting a so-called frozen shoulder! Hoping this isn't a permanent change to the muscles.
Yes, it makes sense that the shoulder injury a couple of years ago could be complicating things in that shoulder, and that the other one may be being aggravated by overuse. And the description of “sharp pains” when moving quickly, I agree doesn’t sound very PMR-like. It does sound as though you could do with some further investigation- perhaps a steroid injection would help. Have you tried contacting PMRpro/Eileen for her thoughts? She might be of the opinion that it is bursitis-related.
I really don't want steroid injection. If it's the steroids which have weakened the soft tissues in the first place that seems somewhat counterproductive. I'm not really "into" taking meds, despite this lengthy pred journey! The physio spent a little while checking me to see what action triggered the pain, and I have to say her therapy is very helpful, but I can't keep her by my side for treatment whenever I need it. But if steroids have weakened the muscles then I shouldn't expect a particularly rapid recovery, must just be patient. No swelling or redness, just sharp pain on occasion when I move wrongly. The info you've given me is very helpful.
It is unlikely to be the pred - but you do have to adjust what you do when you have PMR. Prof Sarah Mackie from Leeds said to me the other day - a lot of golfers also develop PMR!
But myofascial pain syndrome and shoulder bursitis are often found alongside PMR and both will cause shoulder pain. Discuss it with your GP - who may order scans/x-rays to rule out damage.
"What I used to call exercise or using my muscles bears no relation to what I can now tolerate and that is part of the problem perhaps" - I think you have hit the nail on the head. You have a new normal now I'm afraid. We say it all the time - you cannot carry on as you did before. You may build up to a decent level of exercise but it is very unlikely to be as it was before and if you have a day of exercise you need at least a day of rest or you will end up in trouble.
Thanks for your ever helpful advice. I wonder whether I should just try putting my self up to 20mg and see if that removes the shoulder pain? Bit of trial and error I suppose. As you have said before if you feel pain you are on the wrong dose of steroids. If it does improve I then worry that I'm then unaware of when I might be damaging myself. I'm just so reluctant increasing my dose when my reduction had been going relatively well....but perhaps not well enough. Its so hard to know if living with a little discomfort is OK or its a flare starting again.
At the moment getting dressed and normal daily activity around the house is restricted because of shoulder pain. Its difficult not to use your arms and give them the rest they perhaps need.
I'm seeing my GP in a week so will discuss scans etc
Is it one or both shoulders? If it is both, then I'd agreed PMR but it if is only one perhaps not - bursitis or a back muscle problem besides PMR. But I don't see you need to go back to 20, maybe just 10mg would settle it down if it is the PMR and you could try that for a few days and see what happens, if it doesn't help, straight back to 5mg isn't a problem.
It isn't entirely you are on the wrong dose of pred if you have pain, if you have PMR pain that went at the starting dose yes, but there are other things that will cause pain and they are sometimes better dealt with in other ways.
I've been following the slow reduction from 17.5mg and am nearly at 15mg. Today it's 15mg followed by 4 days at 16mg. That's why I suggested going back to 20mg for a few days. I just find it hard that I'm virtually at the same dose I started on last April (20mg) Is it common that some people have to stay on a high dose for months? It certainly wasn't a suggestion from my GP or rheumatologist.
The shoulder was very much the right side and also arm originally. I seemed to twist something when washing my hair and from then on felt like I'd trapped a nerve. Painful for several weeks despite physio. Then had steroid injection which has helped but not got rid of the pain altogether. Left shoulder and arm seem to be going same way. But it's the trapped nerve pain and weakness that make me feel I've injured myself but perhaps that is the Pmr breaking through.
I'm finding it hard to understand how this condition is affecting me but at least I'm learning from reading so many of the useful posts here. It does seem to be a personal journey for us all but at least when I ask a question I know I will get several helpful replies....thanks!
You had a flare - if you had gone about reducing more gently that may never have happened and you'd be at a lower dose.
Originally I had a taper for 6 weeks (not aimed at PMR) and was fine within 6 hours of the first 15mg dose. I was fine all the way to 5mg, within 6 hours of missing the first 5mg I was as bad as ever and I never got the pain properly under control at less than 10mg for about 4 years! It seems to happen to some people, let a flare in and they don't respond to the pred as well next time round. I did eventually get down to 5mg.
My personal suspicion would be this isn't entirely PMR - spasmed upper back muscles can cause a lot of shoulder pain over and above the PMR pain. You possibly might benefit from another steroid injection - but some investigation may be called for.
If it were me, I might look for a Bowen therapist and see if they could make a difference - if it is going to help it will be obvious after up to 3 sessions, if it doesn't you don't need to carry on if you don't want to (it is very relaxing so some people like going anyway, massage without the kneeding!). Or a good sports physio or sports massage therapist might be able to shed some light on possible add-ons to the PMR. They are a very different breed from ordinary physios - although there are some particularly good physios!
Yes, see where you are coming from with 20mg - sorry, assumed you were at a lower dose. Probably a good idea to see of 20mg soothes the pain. The other thing I'd say is that maybe 2.5mg is too much for you. Try 1mg at a time. It isn't slower if it works!
I often have, what I believe to be, either myofascial pain syndrome or bursitis in shoulder(s) or hip(s) and have found that exercise helps. Dr. Google has lots of sites that provide gentle video exercises for these ailments. I tend to use the aquatic ones, but there are plenty of gentle land-based ones as well.
My PMR began with shoulder pain. It was so severe I made an appointment with an orthopedic surgeon. They took x-rays MRIs and found nothing what they did was give me prednisone which relieves pain within 48 Hours it was a blessing. So for me it was the shoulder pain that transitioned over to the other shoulder the prednisone has helped. However, now I'm in a situation where I'm trying to reduce the prednisone and having a really hard time.
Hi there. Is is your shoulders that are still bothering you as you try to reduce? I have found all my other aches and pains under control but its just the shoulders. At least you know you haven't any damage in your shoulders which is great and its probably the PMR, but it is so debilitating shoulder pain. Hope things improve for you!
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