Hi
Has anyone here been wrongly diagnosed when told they have PMR ?
And if so , what was the auto immune disease you have ? I know they can mimic each other .
why I ask , is because I’m told PMR affects both sides of shoulders , upper arms & hips .
But since tapering off pred, I have some pain returning. But it’s right side only - upper arm & not being able to lift arm very high . Also pain in right hip .
PMR is usually bilateral but it can start on one side and then progress or, the other way round, as you taper off pred it can persist on the "bad" side. Also, if myofascial pain syndrome is a part of your PMR it can affect one side more, just as it can when you have it without PMR. While pred can help MPS, it rarely deals with it entirely, just taking the sting out.
Have you any rotator cuff problems? Or trochanteric bursitis? Both can be part of PMR but can also occur in their own right and persist off pred.
Over the years there have been a few misdiagnoses on the forums, LORA (late onset RA) is a fairly common alternative since it and PMR can present identically with no distinguishing features in the early days. Ankylosing spondylitis and palindromic rheumatism are less common but have been seen more than once. There are also other forms of vasculitis but that is less common.
Thank you for the information! I have had carpel tunnel syndrome, which I had an operation for .
It can be part of PMR too
March this year I was diagnosed with strained right shoulder rotator cuff by my Health Centres Physiotherapist who my doctor sent me to. I was given painkillers and exercises to do. Painkillers had very little impact on my pain. After two weeks my left shoulder started hurting and then around my hips. It took another 5 or 6 weeks to get my PMR diagnosis. After a few days on Prednisolone the pain was 90% less. Some weeks later upped to 20mg from 15mg and my pain went away. Tapered since to 15mg, now waiting a month on 15mg before going to 12.5mg. This forum is a massive support, my sincere thanks.
Exactly the same with me. Took an eagle eyed physio to find it out. Still on 1.5mg Pred 12 years later.
Have you tried taking a pain killer to see if that helps? If it does the pain may not be from PMR but something else.
yes I thought I’d take paracetamol on regular basis , which I’ve started & also tramadol 0nce or twice a day . It helped a bit . But out of tramadol the moment & pain creeping up , just waiting for my prescription. Hard to tell with spinal pain probs . Will make appointment see Gp & have a chat with him .
Thanks for your reply .
I found Tramadol totally useless for PMR in my case. PMR does not usually respond to painkillers very well, if at all.
Hi, I'm a complete newbie but 12 weeks ago my Dr diagnosed me with PMR. I'm coming up 48 so fairly young which is why he was at first hesitant to say it was. He put me on prednisone initially 30 mg daily. x rays and ultrasounds showed I have also both hip and shoulder bursitis also. My crp was only 5.3, esr 17 and neg rheumatoid factor, anti ccp low and the prednisone took edge of shoulder pain and body pains to a degree but still there. Paracetamol helps me. After a review with Dr he's now exploring other options RA, and a seronegative spondylitis eg reactive arthritis or ankylosing spondylitis. I'm awaiting blood tests results to see if I have the HLA-B27 gene. Dr also referred me to a rheumatologist. I've had all this pain etc now 2 years so still a mystery. Sorry for your dianosis and I hope you are able to get a good Dr who can help you.
Thank you . I did wonder about RA or ankylosing spondylitis. As I do have other health issues & pain for many years . I’ll see how it goes and I’ll try and push things with Gp .
hi I was diagnosed with PMR between the lockdowns in 2020 and given Prednisolone but it turns out be a misdiagnosis after MRIs and new rheumatologist. I have ankylosing spondylitis and RA and have been on methotrexate since.
First rheumatologist thought I may have mixed connective tissue disorder but bloodwork was OK and advised to start steroids for PMR. After miraculous initial response and everything I’ve learnt about the condition since, feel confident in that duagnosis although open minded to it turning into something else in the future. Second rhematologist I saw says I can’t have PMR and wanted to look again at MCTD so I went back to the first one who disagreed !
It really annoys me when a doctor says someone CAN'T have PMR. To say that it ISN'T PMR is one thing, to say it CAN'T be is another. When all is said and done, there is no cure for autoimmune disease so the label is less important since all they can do is manage the symptoms.
Rheumatologists have been reluctant to diagnose me with PMR for many years. Pains started in 2016 when I was 48. They did eventually put me on steroids and I was almost pain free within a month. They have suggested Ankylosing Spondylitis and Rheumatoid Arthritis and the only thing I can say for certain is that I have an autoimmune disease. Last year I started with awful pains in my hands and wrists which is why they now think it is arthritis of some sort. I don't believe it started as that to be honest but this now fits in with their thinking. I have been reducing my steroids ever since, as I became a yoyo'er, but am getting better at reading my body and with the wonderful DSNS reduction I am now down to 6mg. I am also on Methatroxate too which does seem to be working on the wrist and hands more so maybe its changed over time too.
I have stopped worrying about what it is and focus on what seems to be helping at the time.
Good luck on what can be an incredibly frustrating journey!
Thank you so much !
This site is wonderful & so informative. Really appreciate everyone’s support .
It is a frustrating journey , but I’m going to take a leaf out of your book - To stop worrying about it & focus on what’s helping & do by best .
Sorry about your pain , glad you’re down to just 6mg a day . I think I’m going to end up yo-yo-ing as well . But I’m going to be positive & accept that I may be on steroids for some time .
Thank you 👍🏼
My right side is much worse than my left too. The right is my dominant side.
Hi I was told I had PMR only to discover a year later I had fibromyalgia. What annoyed me was being put on steroids when there was no need . I spent all year in terrible pain coming off them
That’s rotten. I wondered if it’s not Pmr & I’m on these steroids ! ? Plus I’m In Pain now with arm, shoulder & hip . Can’t lift my right arm . Now I don’t know whether to tell gp , Incase he starts messing around with Steroid dose !
How did you respond to pred originally? How much were you given and when did you get pain relief?
I got relief from pain within 24 hrs . Started on 15 mg per day . But I couldn’t sleep , got about 2/3 hrs sleep a night & felt like a Zombie .
Which really does support the concept of PMR as opposed to an inflammatory arthritis which tend to take longer to respond and/or higher doses.
oh dear !! Sounds like you’ve had a hell of a time ! Sorry to hear this . I’ve had uveitis since 2001 . I had flare ups on several occasions back then & treated with steroids . My eyes have been sensitive since then , Photophobic , red eye , blurred vision & dry eyes .
It's unlikely but wonder if i might have this too but there is no eye pain. Did you get your diagnosis from rheumatologist or an ophthalmologist ?
ophthalmologist diagnosed uveitis . And in my experience is extremely painful .
thanks - probably not something for me to worry about then but need to investigate the other symptoms
Hi Ted. I was diagnosed with PMR in August 2021 after 1) Three weeks of neck and shoulder pain on both sides in the January, 2) Bursitis in right foot in March, 3) Right sided hip pain and bilateral neck/ shoulder/arm pain from May. This was after Covid booster at the end of April, which I think was the final straw. I started on 15mg Pred with immediate results. However, because I had other health issues and because I wanted to understand about vulnerability to Covid, I decided to consult a Rheumy. He immediately told me that I didn't have PMR, but Spondyloarthropathy (a form of inflammatory arthritis). From memory, this was because it wasn't bilateral in my hips, and because my IGAs (bloods) were high, as opposed to IGGs being high, which would signify PMR.
For me, the change in diagnosis hasn't made a lot of difference because he said that the best course of action was Pred, and as I am managing on somewhere between 4mg and 5mg, I don't need a DMARD. It's obviously quite difficult at times with auto immune conditions to diagnose with any certainty. The main thing though is to find a treatment which helps to control the symptoms.
Very best wishes on your journey.
Thank you very much for your comments ! Helps a lot to talk to others on this forum .
Absolutely definitely!
Thanks for that Pottawattamie. My rheumy thinks that Pred will be long term for me because I can get by on a relatively low dose. Safer, he says, than introducing other drugs with possibly worse side effects. Take care 😊
Thanks Pottawattamie. It must be difficult when you have so much going on.
yes uveitis is a medical emergency. I was in extreme agony & you can go into shock .
getting a diagnosis of pmr
Trochanteric Bursitis Diagnosis
In search of diagnosis and help...PMR or RA
Wondering about PMR diagnosis
Getting a diagnosis with normal bloods
