After 3.5 years tapering pred I have been left with bilateral rotary cuff which is excruciating. I have had it a year now and finally have an MRI Monday. Apart from an ultra sound scan which confirmed it I have been taking anti inflammatory meds (Nurofen/ Naproxen) and exercising. It has not got any better and I could do with a good nights sleep! I am concerned now as I have Kidney pain and am wondering if the drugs are harming them. When I was at Rheumatology my sample was plus 2 but the rheumatologist didn’t bring it up and told me to carry on with pain killers etc....I should have questioned it but shoulders are biggest concern. Has anybody been left with this issue after Polymialgia (which is still rearing it’s head occasionally)
Bilateral rotary cuff in shoulders after coming o... - PMRGCAuk
Bilateral rotary cuff in shoulders after coming off pred....
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Seriola
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I have developed diverticulitis from long term Prednisalone use and then Tocilizumab on top. I have frequent lower abdominal pain. I would say that your regime is probably hurting your kidneys. I also had frequent symptoms of UTI not always with an infection present. These drugs can do damage. I wouldn’t dare take Nurofen/Naproxen, just more of the same.
Thank you for your message. I am going to try to stop them today and see if I can exercise a bit more. My shoulders hurt all the time but nights are excruciating so I’m not sure how to relieve them without drugs....🙈
I really feel for you. I badly wrenched and broke my shoulder once, the pain was sickening. You ought to have your kidneys checked out really and certainly take stomach protection like Lanzoprazole and food if you have to resort to anti-inflammatory medication. I wonder if Amitriptyline could help the pain and sleeplessness? It does sound miserable.
I’ve been taking Omeprazole but today stopped the pain/anti inflammatory drugs and now hurt all over. Hopefully the MRI will give us some clues. I will get the kidneys checked next week. Thank you for your message.
So sorry about your pain. Have you put a pillow under your rib cage and head which,, if you are on your side sleeping forms a little hole for your shoulder. Helps a lot. I think if you look at Bob and Brad on YouTube and look for shoulder you will find lots of good info. I think BOB and BRAD are the best for all my aches and pains!!
Thank you I will have a look. I’m finding it difficult as it’s both shoulders so if I turn in my sleep the pain wakes me up! I will have a look at Bob and Brad.
gosh I didnt realize both shoulders...that sounds like a PMR flare___?
good luck!!
Thank you. The ultrasound showed rotary in both. I did question PMR last week but they said not…When I had 3 years of PMR it was in the hips and legs so have not experienced the shoulder PMR
Hi Seriols...I started having issues with my right shoulder a couple of years ago. I had an MRI and was told I should find a surgeon, it was a torn rotator cuff. I do not like to jump to surgery right off, but at the same time it was difficult using my right arm. My pain doc suggested I do PT first and wrote a script for me. We did the sessions via telemed because of covid. They were not difficult and at first I was afraid they wouldn't help. Surprisingly they helped a lot. Fast forward to rarly 2022 I downsized and moved and the related activities put a lot of stress on my arm/shoulder. Then in April as PMR was taking hold it got worse and it started to affect my shoulder, arm, elbow. Once I started pred it improved but it still.bothers me to some degree.at night. I have 2 forms of arthritis, fibromyalgia, sjogrens, and now PMR so I have to take pain meds including 800 mg of motrin 2 to 3 times a day. It did help a smidge with part of my PMR pain...or helped the other which just turned down the volume on my ovetsll pain
Blah blah...sorry....my goal is to suggest you do PT specifically for your shoulder and arm and not just exercise. I am pretty sure it will help. Maybe that would allow you to stop the naproxen.
Good luck with this...I hope you can turn this around. Take good care.
Thank you for your message. It sounds like you have had a really hard time and am glad to hear PT has helped. What kind of PT did you do? Gym exercises? Thanks again for your advice I will try anything.
you to a physical therapy practice and they will evaluate your range of motion, strength, etc. Then they develop treatment exercises specifically for your rotator cup and arm. They don't push you ..it's not working out per say, not like a day at the gym.... it's trying to build everything up to normal through easy and repetitive movement. I didn't think the exercises would work but they did. The goal is to NOT overdo it. If it hurts they will stop or change up the exercise. I hope you have a chance to do it. I was so happy I did and I am going to look into it again once I feel a bit better. Good luck.
Thank you. I looked on line and found below the shoulder line PT exercises that seem less painful than what I was doing. Thanks again for the advice. I will look into a PT trainer.
My MRI said that I have a partially torn tendon in my right shoulder and tendonitis on both sides.
I was given exercises by an NHS Physio. They seemed to make my arms and shoulders stronger but did not kill off the pain.
Result I can do a lot more but might end up hurting myself. 😂
It is so painful isn’t it! I have also done the exercises for a year now but unfortunately they have not helped and I struggle now to pull clothes on especially tucking in. It is so frustrating... Hope yours improves.
I find it all too confusing. I do my exercises for a while. I seem to improve but then I deteriorate suddenly and without warning. This occurs after quite a while so does not really tie in with DOMS.
I stop or reduce the frequency or number of repeats or try a different exercise. This may work out well but then will eventually go wrong again.
I can't really tell whether I fail because I do the exercises, stop doing them or taper my steroids. Nothing really ties up.
My current suspicion is that the steroids are preventing the healing/muscle development aspect of inflammation and that I end up tearing more of my body while stretching bits of it. My physio kind of cryptically agreed with me although he was very keen not to commit himself to anything related to PMR.
There seems to be a fine balance between exercising and hurting yourself more..I have found the same but when I stopped exercising although it felt slightly better the arms started to have restricted movement. I feel the steroids have caused the issue but like yourself nobody will back this theory. I start physio again next week…. Good luck with getting stronger
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Urine sample was ++ for what? Something to take to the GP - initially the nurse or paramedic would do to get an appointment in the first place and they will ask the GP what to do - blood and urine tests would be first on the list for me. Once they have results - up to the GP.
Thank you. It was a routine test when I saw the rheumatologist at the hospital last week. I should have asked but he was just starting as a new graduate and we were more involved with the shoulders. I have the back pain sign so will call docs Monday and take a sample. Slightly concerned as it’s been a year now taking Naproxen for the shoulders daily.....
Yes - but the routine test covers several things: glucose, blood, nitrites, protein and sometimes others. You need to know ** for WHAT to make any sense.
I’ve had shoulder pain in the past, had surgery to replace a torn ligament, the pain pre op was horrible. I was given a hydrocortisone injection into the joint which gave good relief for a few months. It does need to be done by an experienced doc though. A year’s pain deserves a referral surely and a plan for treatment.
Thank you for your message. I had a hydrocortisone injection but it didn’t relieve it. It was given by the rheumatologist but it didn’t help but seemed to aggravate more so we didn’t try the other shoulder. I’ve been waiting since June for MRI which is tomorrow. I’m hoping the rheumatologist will refer to me orthopaedics. If not I will have to think about my options.
I’m listening with interest to everyone but you have had shoulder surgery. Was it a success? I am 6 months L shoulder pain that scan and X-ray show torn muscle and inflamed tendon. GP wouldn’t inject saying need to see a shoulder specialist. Thinking would be seeing an orthopaedic consultant (wanted to see privately as so painful) but no am on a long list to see MSK team first and that is the process. My R shoulder is now the same so having scan/ X-ray.
my shoulder surgery was successful, but I had torn the ligament off the bone so no other option. Recovery took a while, 6 weeks in a sling then physio, swimming etc., it took several months to regain full strength.I went privately too because of the pain. I found someone who specialised in shoulders, he gave the injection that worked. If you’ve got inflammation in the joint maybe that would help. Might be money we’ll spent to go private, they could assess both shoulders & give you a plan. If the doc does nhs too that may be useful.
hi I had frozen shoulder when trying to lower my dose from 5mg to 4mg. Because i have had two stomach bleeds and diverticulitis GP prescribed pain patches rather than oral meds. This seemed to help . Must say I went back to 5mg and seem to be stuck on that. Everytime I try to reduce I am in too much pain and I cant go about my every day life .
Hi thank you for your message. That’s interesting. I will ask about pain patches. I was very tempted to start pred again in the early hours of this morning but at my appointment the rheumatologist wanted me off it and if needed start methotrexate. Holding out for the MRI tomorrow.
Need to see an orthopaedic surgeon who specialises in shoulders[called" shoulder service" in my local hospital]They can assess ,inject,repair etc.Physio is about restoring and maintaining function not primarily pain relief.Shoulder pain is horrendous,be careful with exercise not to exacerbate the problems! can you try sleeping sitting up?in a recliner chair or proped up in bed?might be worth a try if you are able.best wishes.
"Physio is about restoring and maintaining function not primarily pain relief"
I beg to differ - the physio I receive here is about pain relief - by rectifying the underlying cause which may be spasmed muscles or similar things. I have gone into the physio barely able to stand without pain and walked out with a considerable improvement. The physio identifies the cause - and then works on it to relieve pain.
That is reassuring. My first physio I was shown a few exercises to do at home but they aggravated them so I am going with a more positive attitude this time.
Thank you for your message and wishes. I did put a pillow under ribs to lift shoulder as advised yesterday which helped but not when I turned in sleep. Hoping after MRI I may be seeing an orthopaedic consultant. I’m keeping the exercises below shoulder level and back to physio Thursday. A year of constant pain is exhausting.
Shoulders/PMR & sometimes Pred are often in Tandem…..
This is where my PMR started - once you’ve had the MRI you’ll know exactly what you’re dealing with & then get treated accordingly. Being treated ‘blind’ is not the way forward as more damage can be done.
The one tablet that helped my was Amitriptyline as it helps the muscles relax, taken early in the evening 7pm to prevent that ‘hangover’ feeling the next day & they do take a few hours to work.
Warm even hot showers help but agree sleeping is a nightmare & l had to evict my darling husband for a few nights as l was always afraid he’d roll on my shoulder….
Lots of pillows cushions to support various parts of neck & arms……
Pain Killers such as Paracetamol & Codeine can be more helpful than anti inflammatory’s but they can be beneficial too but when we take Pred as well it can be very tough on your stomach.
Once you have the accurate picture the treatment will be more specific, warmth is good too - l have a heat pad which is better than a hot water bottle but they can help too & the wheat packs if you don’t over heat them 😉
Good Luck 🍀
Thank you so much. There is a lot of information I will take on board in your message. I get conflicting reports on the internet as to using ice or heat. Heat is bliss.
You’ll know yourself which is best - the warm/hot shower & warm heat pads of whatever sort.
I always think of ice for an injury such as a sprained ankle. But on this kind of injury (for me at least would put my muscles into spasm!) so warmth might be best!
Good Luck 🍀
Yes it is definitely more comforting than ice 🤣
Heat is more comforting, but ice will reduce inflammation.
I stopped prednisone in January 2022 and Actemra at the end of March 2022 after having PMR and GCA for six years. I promptly hurt the tendons and ligaments in my right arm when picking up a heavy bag of groceries, which I was able to heal with physical therapy exercises and rest in about 6 weeks. I then hurt my left shoulder trying to turn my shoulder to swing a golf club! Six years of illness definitely made my body fragile. That has proved much harder to heal with physical therapy exercises. I am currently using a portable TENS machine for pain relief which has helped me a lot. I also have pain in my right knee that I’m going to have to get checked out. I tried ibuprofen to help with the pain but I could no longer tolerate it after six years of prednisone which is why I’m using the Tens machine. It’s still better than PMR/GCA But it would be nice to be able to sleep through the night without pain. I hope you get some good information from your MRI
Thank you for your message. What a difficult time you’ve had! I also was diagnosed with osteoarthritis in my left knee at the same time which is painful (too young for the op) but the shoulders are my priority. I asked to be referred to the pain clinic but the rheumatologist didn’t feel it was right at this stage. I will look into getting a TENS machine. Thank you.
I think I have used my arms and shoulders more since having PMR to haul myself out of the bath and to help me out if chairs, the car etc. this is because my legs, feet and ankles don’t do the work they used to. I find a TENS machine, heat and ice the best for chronic pain.
Hi Seriola, sorry to hear you’re having shoulder issues. I tripped and bumped into a wall last November with my arm outstretched. The pain was excruciating and after 2 days I attended A&E. I was told I had soft tissue damage and given some physio exercises to do. In March this year I was still having pain particularly at night. I paid to have a private MRI which revealed a full thickness tear in my supraspinatus tendon and bone spurs from osteoarthritis. The surgeon told me that my shoulder would never heal without surgery. I tried some physio to strengthen the surrounding muscles but the pain just got worse. I had arthroscopic shoulder surgery 11 days ago. The surgeon said that my shoulder had deteriorated since my MRI and I also had a torn biceps muscle. I think having PMR and taking steroids made matters worse. My advice would be to get your MRI and see what you’re dealing with and take it from there. Good Luck 🌸
Thank you for your message. I hope you are recovering well from your operation. What a lot of damage you have had. I really do believe the steroids have caused my issue. I was fit and strong before PMR with muscular shoulders, they are now just bone now. .I’m hoping the MRI will lead me to some sort of recovery. Wishing you well after your op.
I had my rotor cuff injected with short-acting and long-acting steroid. 6 years ago. Great success - it solved the problem - this was pre-pmr though.
That’s interesting I was not aware there were 2 types of steroid. I will ask about that option. Thank you
They diagnosed 'bursitis' - which is treated in the way I described. I checked a few sites but didn't see two steroid types mentioned. It was done at the Parkside in London, into the 'fluid-filled sac called the bursa, which protects the tendons' and administered under ultrasound to ensure the needle goes into the sac. The pain and restricted movement never came back - so far!
Hi. Sorry you're having such a rough time. Unless you have a job or hobby that has injured both shoulders simultaneously, I'd be amazed if your have bilateral rotator cuff injuries (or two frozen shoulders). Weak, stiff, painful shoulders are a common symptom of PMR (which is a syndrome, not a disease). I'm of a similar age to you and yet, despite being on 10mg of prednisolone, I cannot raise my hands fully above my head, let alone change a wheel on the car. My shoulder muscles are so weak and stiff, my upper arms won't go above the horizontal. The last time they did was when I was on a 25 or 30mg, and only then if I avoided too much exercise. Here's the weirdest thing, however: if I lie down on the floor, on my back, I can stretch my arms 'above' my head (i.e. along the carpet), presumably because I'm no longer working against gravity. Don't get me wrong: the muscles still feel very sore and stiff, but it demonstrates that there are no muscle tears or other injuries involved. Try it! If I'm right, your weak, stiff, painful shoulders are due to the same systemic vasculitis (inflammation of the lining of your blood vessels) that caused the earlier symptoms in your pelvic region. It's all part of your PMR and the underlying autoimmune condition (vasculitis) that causes it. Some of the constriction of the blood vessels will be current inflammation and some may be longer-term scarring. By the way: I find naproxen, ibuprofen, and other NSAIDs provide huge relief for a few days and then start making me feel worse! I can only use them briefly. I noticed that NSAIDs were not recommended during the covid pandemic because they often upset the part of the immune system that is supposed to be helping! I suspect you need a higher dose of prednisolone and/or other immunosuppressant. Regards and good luck!
Thanks for the message. The Rheumatologist did an ultrascan. It started in one shoulder and a few weeks later into the other. Not an injury due to sports but very angry tendons and bits in between apparently. (Bursars)
He says that they are inflamed but not it’s not PMR. I got on the floor but can’t get them above my head. It’s so frustrating.....3.5 years of prednisolone is my limit so next step is methotrexate. Hopefully the MRI will give some answers.
Why does he say it isn't PMR? Shoulder bursitis is often PMR and it is the attachments that get inflamed ...
Yes and the loss of muscle. The pain radiates down to my hands now. 2 different rheumatologists have looked at the ultrasound and told me it’s rotary cuff through inflammation. I have questioned if it’s PMR but have been told no.....Hopefully I will get answers from th MRI.
The underlying cause of the symptoms we call PMR is usually vasculitis, i.e. inflammation of the blood vessels serving the muscles. That's why too much exercise worsens the damage to the muscle cells and surrounding tissues (while too little exercise results in muscle loss, of course). Vasculitis can be body wide and produce symptoms beyond the shoulders/neck and hips/thighs associated with PMR; and beyond the eyes/head associated with GCA; and beyond the organs associated with the many other vasculitides. My lower legs hurt even more than my shoulders/neck/hips/thighs, and I get cramps in my hands and nerve burning in my little toes and fingers; but it was the bizarre PMR symptoms (not being able to hold up a newspaper, camera or binoculars for more than a few seconds before escalating fatigue and pain set in) that gave away the underlying cause. It seems a sizable proportion of vasculitis sufferers do not fit into the convenient diagnosis silos. Many do not even fail the inflammation tests! So doctors end up diagnosing healthy-jointed people with arthritis, and healthy-lunged people with COPD! But that does not mean inflammation of the blood vessels and the tissues they serve due to auto-immunity is not the real cause. I consider myself a sufferer of chronic vasculitis, the most obvious, giveaway symptoms of which are PMR. Bilateral rotator cuff stiffness or bilateral frozen shoulders are just the names for symptoms; if the cause is inflammation due to autoimmunity (and not mechanical injury or infectious disease), then the underlying cause might still be vasculitis, as with PMR.
"The underlying cause of the symptoms we call PMR is usually vasculitis,"
There are several potential causes of PMR-type symptoms - and in "pure" PMR cases there is not that much evidence that the larger blood vessels are inflamed with the inflammation being seen in soft tissues around the joints. IF it is purely vasculitis it must be in the smallest capillaries in the vascular bed. If larger blood vessels are involved it becomes large vessel vasculitis .
Indeed. From what I've read, the strongest evidence linking PMR to vasculitis is the very strong correlation with GCA, which is much more acute and better understood than PMR. About 40-50% of GCA patients also have PMR symptoms. Now, apparently, the walls of the temporal (and other) arteries are so muscular and thick (unlike veins) they have their own capillaries to supply blood. The inflammation that leads to GCA starts in these capillaries, in the muscle of the artery walls, not in the cells defining the inside of the artery tube itself. So inflammation of capillaries serving muscles and the surrounding tissues is implicated in both GCA & PMR, not arteries or veins.
Let us know won’t you.
I fear I am in a similar position as you with both of mine giving me hell especially at night.I cannot sleep on either of them.
My Rheumie appointment is this week over the phone so I will be asking for his thoughts.
Regards Margaret.
I will Margaret. I’m sorry to hear that you have similar. Hopefully it won’t be long to get results from the MRI. It will be interesting to know what your rheumatologist thinks about it. Won’t it be good to get a nights sleep!!!
I have the same problem, but I was told by one of the consultant at the hospital, not to have an operation, I didn't have it, as it does come back. You have been on Pred for a long time, I had the other 2 medication about 5 years ago, did no good for me, I stick to Paracetamol and Ibrophen as and when required.
I also have rotator cuff tendinitis in one shoulder. I was unaware of it happening. Like so many others here, I have tried gentle exercises, which seem to help a little at first, then start to make it worse. I think most of the pain I have in my thighs is also down to unhappy tendons. I think it is all down to pred, and found this: 'Preclinical studies have linked corticosteroids to transient weakening of both intact and injured rotator cuff tendons, as well as irreversible damage to healing muscle.' onlinelibrary.wiley.com/doi... also pubmed.ncbi.nlm.nih.gov/159...
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