Just reduced to 10 mg of Prednisolone and the pain in my left shoulder is like a knife but my blood test last week showed a normal ESR and CRP. My rheumatologist is keen on my tapering another 1 mg shortly but the pain is so excruciating I am also taking paracetamol and Ibuprofen(naughty I know). I have done nothing to warrant this agony apart from reducing the steroids. I am tempted to return to 11 mg and ignore my rheumy. Would appreciate some advice please.
Agonising shoulder pain: Just reduced to 10 mg of... - PMRGCAuk
Agonising shoulder pain
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butterflyfarm
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DorsetLadyPMRGCAuk volunteer
Think you may need to look at other causes if it’s just left shoulder…..osteoarthritis, frozen shoulder, rotator cuff issues…but going back to 11mg might be sensible whilst it takes time to organise.
Hi DorsetLady, I have done exactly that as I couldn't bear the pain. As tangocharlie suggested I think it could be a trapped nerve. After the bank holiday I shall try to see a doctor or physiotherapist privately. All the advice on this site is wonderful, thankyou.
Hello, it might be worth having a think about this before a knee jerk increase in Pred, so a few questions. Have you spoken to a doc yet? Have you had this particular pain before? Is the pain in one spot or area? What movements hurt? Did it start suddenly or build and how long ago? What do you do activity wise? Even things that you don’t rate as strenuous can be once the muscles and ligaments weaken. Also, blood results can lag behind pain symptoms or not even show at all, so don’t put too much on them.
Hi Snazzy D, the pain was sudden and came on during the night. I am aware that I can't do the sort of things I used to do in the gym just 1 year ago. I am going to try and see a physio privately next week as I think it may be a trapped nerve. I had to give in and take more pred as the pain is quite unbearable in spite of taking additional paracetamol and Ibuprofen. Also using a heat pad. Thank you for your advice.
A sudden onset severe pain in a specific spot sounds like something else and upping Pred may not be the answer and possibly not conducive to healing too. It’s good you’re seeing someone about it.
PMRproAmbassador
Never mind "just" blood tests - has no-one felt a need to do some imaging/a physical examination for other potential causes.
Hi PMR pro, I have had a DEXA scan and MRI scan on my neck which seemed to be the average for my age of 75 years. I did tell my rheumatologist about the shoulder pain this week but she made no comment as she is keen to get my steroids down to below 7. I am supposed to be on 10 mg, but have gone back to 11 mg. My problem is I suffer from neuropathy from time to time due to type 2 diabetes, but nothing like this current pain, which seems to be a possible trapped nerve as tangocharlie suggested. I shall try to see a physio privately next week, after the blinking bank holiday! Doesn't seem too bad after being on 40 mg for suspected GCA last October and now just PMR hopefully. Thank you, this is such a wonderful website.
Could be anything - frozen shoulder, bursitis, trapped median nerve (I had that recently and the pain was as you describe) not necessarily PMR. I'd get somebody to take a look at it eg GP or physiotherapist
Hi Tangocharlie, I think you're right about a trapped nerve and I woke up with it 2 days ago, so must have somehow caused it during the night. The pain made me break out in a sweat and so I have upped the steroids until I can see a doctor or physio next week. Typical for this to be over a bank holiday! My MRI scan on my cervical spine showed right exit foraminal narrowing at C4/C5 and bilateral exit foraminal at C5/C8, whatever that means. Thanks for your advice. 😊
I have a painful shoulder off and on and I suspect there are two things going on. The sharp pain, the one which makes me inadvertently gasp or you know, express pain, is caused, I think, by referred pain from my arthritic neck. I do have more of a dull pain in certain positions, present even on days when the sharp pain is absent, and I don't know what that is. The sharp pain does seem better when I pay attention to my posture and faithfully do my exercises. The other one is of no consequence as it doesn't affect my life and isn't noticeable except in certain extreme positions, range of motion not restricted, so I'm going to blame that on age....
Have you tried contacting a pharmacy they can be helpful
How so?
Mine came on suddenly overnight in my left shoulder and I assumed I'd just slept badly or it was the Covid jab I'd had a few days before but the pain went on. It was excruciating pain. My GP to me to go to A&E on day 5 where they did an x-ray to rule out a breakage or a dropped collar bone. Also prescribed codeine 30 mg which did nothing for the pain but helped me sleep. After about 2 weeks I had a telephone assessment from a physiotherapist who diagnosed a trapped nerve because most of my fingers on the left hand were numb and tingly which is a classic sign, I can't remember which fingers exactly. He said it would go away in about 8 weeks and sure enough it did.
I stuck out the shoulder pain for4 days using my Tens machine, heat pad and co-codamol . During that time other pains started to creep in, so I upped my steroids by 1 mg and this did the trick. No chance of seeing a doctor this week or a physio, but I don't think that will now be necessary. I was also very hot and sweaty and a bit shaky before I increased the pred, so who knows what? I did try to post a longer version of this reply but it disappeared? Thanks.
I have been experiencing same symptoms thinking it may just be arthritis. Never the less I have an order for physical therapy to rule out rotator cuff. I did a 6 week session for lower body weakness and balance. The results were remarkable for me and was an indication that sitting around for two years doing nothing does you no good. I only hope I have as good of luck with my shoulders. PMR going on three years down to 4.5 predisone with addition of 400 mg hydroxychloroquine.
I had the same problem when reducing my Prednisone. According to some research, shoulder pain could be linked to high cholesterol, a side effect of this medication. After getting a test reading of 7.2, I took the personal decision to take Plant Sterol and Red Rice supplements along with dramatically reducing my animal fat intake. I also try and eat more ‘Heart Healthy’ foods (See NHS website). I am hoping that this proactive approach will help me to stay off Statins and the problems they bring.I am down to 5mg now and feel generally fine. Sometimes I have a bad day but generally this strategy works for me.
Hope you get better soon
The active ingredient in red rice IS a statin:
"Red yeast rice contains the compound monacolin K — the same active ingredient found in prescription cholesterol-lowering medications like lovastatin "
The difference is that you don't know how much and that it isn't carefully monitored during production.
Hi, thanks for the info
Not all red yeast rice contain it....they aren't created equal!! nccih.nih.gov/health/red-ye...
Mmmm- but I bet people don't know those subtle differences!! And they do point out that they may not reduce cholesterol:
"Other red yeast rice products contain little or no monacolin K. It is not known whether these products have any effect on blood cholesterol levels"
which is the object of the exercise.
"The U.S. Food and Drug Administration (FDA) has determined that red yeast rice products that contain more than trace amounts of monacolin K are unapproved new drugs and cannot be sold legally as dietary supplements.
Some red yeast rice products contain a contaminant called citrinin, which can cause kidney failure."
so you might be taking unapproved drugs and risking your renal health ...
May be frozen shoulder? It passes but some simple exercises are needed. May be ask physio to check?
Had the sane, it lasted four weeks, couldn't lift the arm, get dressed at all without help etc. But I stuck it out & didn't up my steroids & it was fine, it didn’t bring on a flare or any pmr symptoms, good luck! When I have PMR trouble with my shoulders, It’s always both of them! Just my history in case it helps!
Mine was down to the way I lie in bed and the mattress I had.I cannot change the way I lie, as I can only lie on one side because of arthritis but the change of mattress helped.
I had similar thing years ago. Was a rotator cuff problem. I didn't know what to do with myself the pain was so bad. Cortisone injection stopped it.
I feel so bad for you as I know shoulder pain! You described it perfectly! That shooting knife pain if you move just the slightest..even take a breath you feel it. I know you may be so tempted to up your steroids regardless of what your doctor says but TRY not to. Give it a good 3 days! YOU got this! If after that 3 days you are still in so much pain then consider an increase. My bloodwork has been perfect many times and I've had flare-ups too! It sounds like your doctor wants to get you down. 1 mg should NOT make that huge of a difference at all. How many days have you been down to 10?As for the shoulder my ONLY help was ICE. 15 mins on, 15mins off. IT works!
Indeed - 1mg can easily be the difference between being enough to suppress the inflammation and not. Even 1/2mg can be ...
Well, everyone is different as I do not have that same experience. For me, my number is 2mgs. If I drop 2mgs I have a big difference in pain etc. I am a steroid lifer. I will be on them forever as my Adrenalin Gland shut down. I take 4mgs/3mgs every other day.I do have one question...do you take the full dose all at once or do you split it (5mg am 5 mgs pm)? In my case, splitting the dose to twice a day gave me the most relief but again EVERY single person is different. If it were me (which of course it is not), I would try my absolute best to drop down and get off the steroids. I know they are great for inflammation but (I've been on them over 15years), the side effects are NOT good at al, thus why your physician only has your best interests/health in mind. I wish I would have dropped the steroids and muddled through my pain.
I get the impression from your profile that you don't have PMR or GCA but inflammatory arthritis? For which I assume you are on a DMARD of some sort? Almost all of us here have either PMR or GCA, some of us have both, and the only option for management of the inflammation and symptoms is corticosteroids unless you have access to Actemra/tocilizumab - that isn't used as yet for PMR and is restricted in use even for GCA in most countries. If your need for steroids is for longterm adrenal insufficiency then that is not relevant to the majority of people in this forum. The number with adrenal insufficiency requiring management with steroids is actually relatively small.
I have the same type of pain in my left shoulder and neck every time I decrease my methylprednisolone. I am currently reducing to 6 mgs. and have had PMR for 2years in October. I had a rotator cuff surgery on my right arm, before I came down with PMR, and it is never affected. My left arm also goes numb. I use the slow reducing method, and the pain and numbness usually lasts for about a month and then goes away. I then stay at that level for another two months, and then reduce all over again, starting the pain again.
I’m having left shoulder pain also— I was afraid it was avascular neucrosis caused by prednisone shutting down the blood supply to my shoulder (this happened to my hip 3 years ago and I had to have a hip replacement).
Went to an orthopedic doctor— X-ray showed bone on bone in my shoulder— which is caused by arthritis. I quit sleeping on that side and did heat and ice. It quit hurting but this is my life from now on— no heavy lifting or reaching too high. ☹️
PMRproAmbassador
But THIS particular forum is for polymyalgia rheumatica and giant cell arteritis which are rather different from forms of arthritis since they don't affect joints and are due to vasculitis - are in fact arteritis, inflamed arteries.
DorsetLadyPMRGCAuk volunteer
No it’s not harassment, but as rightly pointed out GCA and/or PMR are different to RA, and if you don’t have GCA or PMR you may not realise the subtle differences in treatment, and be giving misleading information….
How strange that its always the LEFT shoulder! I too have had bad pain in left shoulder for about 3 months when doing certain movements. Recently was referred to orthopaedic something or other who have diagnosed degenerative rotator cuff tear. Wouldn't give me a steroid injection as I am on steroids for CVA. So have to do exercises for i don't know how long which I feel are totally ineffective. In the meantime I try to use only my right arm and hand (I am left handed) for everything. Brushing my teeth is the worst. Does anyone think there is a link between steroids and this shoulder problem? The pain is really bad. I fantasize about having a steroid injection as had one once for my wrist and was like miracle! All pain went and no recurrence. Hope you get yours sorted Butterfly Farm. It really is so debilitating isn't it? There are so many things I cannot do now.FastTrack
Why won't they use a local steroid jab? My rheumy does.
A friend has told me that local steroid injections are expensive. Wonder if the NHS tries to avoid them?
They are a lot cheaper than a lot of other things! GPs probably don't like doing them because there is this perception they are better with imaging. That applies for intraarticular ones (into a joint) but doing them into soft tissue works well when they know what they are doing but it is a bit hit and miss when they don't have the experience.
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