So after just over 2 years since diagnosis and the usual bumps I eventually tapered to zero pred last November. The PMR symptoms I started with have gone but I’m now dealing with an acute issue in the left shoulder. I saw a specialist and had MRI scans which showed inflammation in the tendon that runs down into the upper bicep . My physio thinks it’s rotator cuff tendinitis and set me physio which I have continued .I also had a cortisone injection in the shoulder by the specialist but the pain in the shoulder and upper bicep persist. I can’t sleep on my left side due to the pain. It seems to all boil down to inflammation in the shoulder joint area and I’m beginning to wonder if it’s still PMR. The right shoulder is pretty good with only minor discomfort. A real dilemma. This week I started thinking should I give myself a 10mg dose of pred for a few days, see if that help then taper down again but what if it’s nothing to do with PMR? Grrr- what to do. Any thoughts welcome.
PMR gone or has it?: So after just over 2 years... - PMRGCAuk
PMR gone or has it?
Like you over 2 years on pred for PMR stopped last November .however I have a old problem in my neck one vertebrae is slightly pressing on my spine, which causes trapped nerves, so I can’t feel my arms and hands through the night & My shoulders had the same problem as you. I think on steroids this was masked somewhat.
Rheumatologist has given me gabapentin three times a day which hasn’t helped much, now I can feel huge PMR flare and I can’t have steroids as they cause muscle pain all over.
I can hardly get out of bed so calling the doctor today,
Perhaps have a word with yours
Stay safe
Hi CarolBF - yes lots of similarities. I didn’t put in my post but I also have a prolapsed disc in the neck which causes similar nerve issues and pins and needles at night . With that and the shoulder It gets complicated trying to explain it all and very painful!
Good luck when you see your doctor.
Had an interesting call with the GP I said the pain I was in and he said if it’s not in all your muscles it’s not PMR,
PMR is inflammation in your muscles not your hips and shoulder.
I was really upset with him. I said 2.5 years ago all my pain was in my hips and shoulders and steroids helped, (different doctor) he said it says on your notes That they didn’t help,
It’s a shame that the doctors now try and make you feel that with covid going on nothing else matters 😕
He has put me on 20mg for 7 days to see if it helps. I have a phone call booked for next week,
I am gutted to be back on them but I am the sole earner in our family and I need to work, we don’t get any medals for bravery.
A cold not frozen compress on my shoulder before bed helps me at night
Perhaps he should read the guidelines - this from NICE on diagnosis -
Suspect polymyalgia rheumatica (PMR) in a person over 50 years of age presenting with at least 2 weeks of the core symptoms of:
Bilateral shoulder and/or pelvic girdle pain. Initially this may be unilateral but quickly becomes bilateral, is worse with movement, and interferes with sleep.
Shoulder pain may radiate to the elbows and is the presenting feature in 70–95% of people.
Hip and neck pain is the presenting feature in 50–70% of people. Hip pain may radiate to the knees.
Stiffness lasting for at least 45 minutes after waking or periods of rest that may cause the person to have difficulty turning over in bed, rising from a bed or a chair, or raising their arms above shoulder height.
Additional features that may accompany these core symptoms include:
Low-grade fever, fatigue, anorexia, weight loss, and depression — systemic symptoms occur in 40–50% of people with PMR.
Bilateral upper arm tenderness — sometimes present.
Peripheral musculoskeletal signs — seen in approximately 50% of people and include:
Carpal tunnel syndrome.
Peripheral arthritis (predominantly affecting the knees and wrists), which is asymmetric and self-limiting.
Swelling with pitting oedema of hands, wrists, feet, and ankles.
Muscle strength is not usually impaired, but muscle pain may make testing difficult. If symptoms are protracted, disuse atrophy of muscle can occur, leading to muscle weakness.
Thank you x
Hi,
Sorry to hear about shoulder, it can be really frustrating when you can’t lie on that side...been there!
I will throw in a couple of things from personal experience-
Have you been xrayed for arthritis in that shoulder?
My GCA started very similarly- both shoulders, but one always worse than other (partly GCA , partly OA)- but misdiagnosed as frozen shoulder.
Some cortisone injections work better than others, but I would expect a better result if it were RC issues or OA.
You could try 10mg for a week, then either stop completely or step down in second week to 5mg then stop...and see what situation is.
The only problem is, it might not be conclusive,, the Pred is likely to mask OA pain as well as PMR/GCA.
Personally I would be back to GP to ask inflammation markers to be tested - and throw in the GCA possibility - and request x-rays.
Hope it’s not GCA, but please get it checked.
Hi DorsetLady- I haven’t had x rays done just the MRI scans ( I didn’t mention a prolapsed vertebrae in the neck compounding everything going on in the shoulder/bicep. GCA is a scary prospect for sure. As you say I think it’d a call to the doc to get some further tests . Hohum!
Yes please do...it may not be GCA, but always best to eliminate it early as possible. please keep us informed either way.
DL, I never knew GCA could be related to shoulder pain. I cant even imagine either my gp or rheumy taking any notice. Was it a weird kind of shoulder pain that alerted your medics to gca?
No!
I started with bicep pains which led to both shoulders- initially ESR tested, but deemed satisfactory- so PMR discounted....and I although I didn’t have PMR, it was the start of GCA.
However GP obviously didn’t join the dots, and went down the frozen shoulder route despite the fact that both were affected, albeit left worse than right....it total 3 cortisone injections in left shoulder over a 12 month period, which each worked for about 2 weeks, obviously addressing the inflammation temporarily.
This was followed by fatigue (GP - getting older and caring for hubby) and eventually neck and head pains (GP- trapped nerve from shoulder!)
I was eventually diagnosed in A&E by an Ophthamologist after 4 days of increasing blurriness in right eye. Unfortunately not in time to save the sight in that eye.
This was 8-10 years ago, and I would hope things have improved since then.......and mostly they have, but....
God almighty. I can relate to the local injections keeping the inflammation markers down, i think thats what was covering my pmr til it really got out of hand. I knew there was something different/not right but honestly no one would listen!! Lie down there and have another injection!!! It wouldbe funny if not so tragic. God help us trying to stear through these things! I hope you're feelin better now from your fall xx thanks.
GA indeed......never heard of PMR nor GCA back in the day.
Now you know why I’m on a one woman crusade to make sure no-one goes through what I did.
On the mend thanks, and Covid vaccine tomorrow! Yay 😁
Oooh great!!!!!
Mikey
I would follow Dorset Ladies advice.........and move quickly.
I do know a few men whose PMR went into remission within or around the 2 year mark. A couple of them PMR came back within around 6 - 8 months. Both started again and when it went into remission the 2nd time this time it stayed there.
Look at my Profile.
Rotator cuff tendonitis can be part of PMR - but it can be a thing in its own right and I think that certain bits remain weak spots both during PMR and afterwards. You had a cortisone shot that didn't help - would oral pred be any better I ask? Though the only way to find out is to try!But I agree with DL - and if the other shoulder gets worse that may be your answer.
Hi,I read your post with a lot of interest, because after six years of PMR, the last remaining place of discomfort is at the top of my left arm. If it wasn't for that, I would have been off pred about a year ago.
I did up my dose from zero to five mg for a week ( I had been at zero for just one week), and it did help a bit so I thought it was lingering PMR. That was last October.
Today, I am back to one mg, and the discomfort is back again, so I am toying with the idea of a cortisone injection from my GP - just waiting now till they are a bit less busy.
All the other painful areas from PMR have cleared up, so this last part is really frustrating. Don't think it is rotator cuff, as the pain is muscular and definitely at the top of my arm rather than shoulder.
Paddy
I get discomfort in my left arm, above the bicep, and the physio says it is myofascial pain syndrome - the muscle fascia sort of sticks and doesn't allow the muscle to move smoothly. The trigger points that form are really tender - and that is what she works on. Hurts at the time but then is much better until the next time. I also get a more local pain where the muscle attaches to the tendons .
Thank you for your comments which are helpful for me.Paddy
Hi Paddy - thanks for sharing your story too. One of the great things about this forum is realising that you’re not on your own. The worst pain is top of my arm too, particularly if I turn to sleep on it or extend my arm out and back ( like you do when you reverse the car) that’s off the Richter scale. Shoulder aches but the specialist said the MRI showed a bit of OA. Trying to identify root causes is like looking for the proverbial needle in a haystack !
That’s interesting - I stopped taking pred in December and felt pretty much ok except for deep seated ache in left shoulder. Was able to see physio before latest lockdown and he diagnosed rotator cuff strain. It was a weird experience as he took me through many different movements and some did not hurt at all. Have exercises to do every other day and is much better though worse on certain days - worse on days I try a bit too hard at yoga and on days I do very little so trying to find optimal level. No hope of a MRI atm - am taking the occasional ibuprofen which works whereas had no effect in my pmr, best wishes
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