I wondered if all you lovely ladies and gentlemen would have a look over my symptoms and give your advice as to if you think my diagnosis of PMR is valid.
The symptoms started around June. The first thing that happened was that I had terrible pain in my arm muscles when trying to reach into food cupboards etc- I kind of ignored it and hoped it would go away. I did mention it in phone consultation with the doctor (locum) who wouldnt discuss it as I had originally rang about a stomach issue! This progressed to being unable to raise my arms up to dress- putting my bra on became a challenge and cardigans and coats had to be helped on by my husband.
Next was difficulty wiping my bum and washing hair in the shower! The last straw was when I burst into tears because I couldnt put my hair up. I also have painful arms on waking that lasts until lunchtime and then usually kicks back in in the evening. My lateral side of my left knee is painful and stiff hips if Ive been on car journey.
So rang for another GP appointment- another locum.
This one thought it was menopause aches and pains and put me back on HRT ( been off HRT for 18 months) with a follow up call two weeks later! At that call I told him there was no change so we did blood tests that all came back . However he did say he thought it was PMR but didnt want to be responsible for putting me on steroids without seeing Rheumatologist. He referred me but I recieved a letter from them with the main jist being dont hold your breath due to covid! I rang and demanded a face to face consultation with a Gp. I saw a lovely lady doctor who had lots of sympathy and said that I should have been put on steroids and promptly prescribed 20mg daily for two weeks.
My quandery is that the prednisolone hasnt really done much and Im on day 6- so I was wondering if it is OPMR at all?
Im sorry for such long post! Im grateful for ant pearls of wisdom anyone can give. Thanks in advance 💖
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Lyndalou62
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Sounds very PMR ish to me....so well done latest GP.
For some people there is a miraculous result, but not for all - as you have 2 weeks of Pred, then hold off making a decision until the 2 weeks are up....you might take a bit longer than some.
As for blood results, up to 20% of patients don’t have raised markers - symptoms are the key.
But you have to do your bit as well, just because you are on the Pred, doesn't mean everything is back normal.
The Pred needs to get the built up inflammation under control as well as deal with the newly produced inflammation every day.....so give it time, and remember if it is PMR - it is a systemic disease which means life has to be taken at a slower pace, so treat yourself to some TLC and rest to give the medication a chance to work.
Please let us know how things go at next GP appointment.
Hi DorsetLady thanks so much for your very informative post. Guess Im just feeling a bit down and disappointed today. Ill just have to keep going and hope for the best.☺️
Goodness me - poor you. The description of your symptoms reminds me very much of all that I experienced some six years ago, except about putting on a bra, and getting my hair up ( I am an 80 year old male!).
You don't say how long you've been taking the pred for. For some people, there is a fairly instant improvement of about 70%, whereas for others it can take a few days before any improvement is felt. In my case 20mg was not enough to clear the inflammation, so I was upped to 30mg for three weeks.
I am not medically qualified at all, and am only saying what happened to me. For sure, others on this excellent forum will be along to give their opinion and advice.
It's OK - the human brain reads all sorts of things perfectly happily, only the first and last letters of a word have to be right, the rest can be all jumbled!
In terms of symptoms you have pretty testbook PMR. 6 days at 20mg? Early days ...
Very similar to my initial symptoms, virtually impossible to reach up for items from a shelf. Just could not scratch my head without excruciating pain. 20mg should have some effect soon though, good luck.
Thanks pilette- doubts just creeping in as not much change in symptoms. Guess I will just have to keep going x
I too initially suffered with similar symptoms that you currently have, excruciating pain tops of arms, reaching up to shelves for food / crockery being difficult if at all achievable, problems with dressing, eg bra and finding different ways of getting around it, and with problems manual dexterity including opening tins etc. 3 months down the line, 15mg start and reducing pred now on 11mg and goodness me, what an amazing difference!! I also did not have raised blood markers, being one of the 20%! I do hope that the pred kicks in soon for you and your symptoms soon subside, best wishes 💐
Thank you so much for your reply. I feel better now that ive had some reassurance that my symptoms are fairly typical for PMR. I just didn't want to be taking steroids if it wasnt the correct diagnosis. Just having a bad day 😫
I am slowly reducing my pred. After being on it the whole of both lockdowns, didn’t even get to se a dr . Due to menacing pmr before 6 years ago it was automatically taken it has come back but it’s all in one arm shoulder and one side of neck not like before when it was all over. Oh and my hands are swollen.Still haven’t seen a dr phone calls just keep saying keep taking the pred and reduce slowly.
I think we should now be seeing gps not just bier the phone.
I couldn’t say if markers raised and not been allowed to go and have blood only telephone diagnosis 🤷♀️
All the GPs use here are masks and distancing - I've seen my GP a few times. Lovely - no queues, most people don't want to go to her during lockdown. They've changed prescription rules so it is all online, direct to your preferred pharmacy. She is even still doing house visits ...
Your symptoms sound exactly like mine when diagnosed, “classic” according to my rheumatologist. I was lucky and responded quickly to my starting dose (10mg) of prednisone, finding some immediate relief as well as more improvements over the next month.
My rheumatologist has her own approach, starting everyone at 10, but very quickly adjusting the dose if her patients don’t find relief. She says some are like me and do fine at 10mg. Others need 15, 20, 25 or 30mg. If a patient is still struggling at 30mg she says she looks for a cause other than PMR.
My symptoms usually align with increases or decreases in my CRP blood test results but not always. As noted by others, some people’s blood tests don’t show raised markers.
Your symptoms were exactly the same as mine. However after I started on 15mg of pred I had a miraculous ‘cure’ after 48 hours. Give it another few days and hope it all kicks in. 🤞🤞
Hi there, your symptoms sound like mine and I too came back with normal blood tests. I was eventually diagnosed with frozen shoulder, it just took a long time to freeze and to be honest, I still don’t really know why I had pain in both arms (although it was definitely worse in one). Has your Dr ruled this out? One thing I have learned is that these things can take ages to get better so take it easy on yourself.
Like you, both shoulders affected with one being worse (know it was arthritis later) - but GP kept insisting and treated as frozen..and telling me it would get better ‘soon’ - unfortunately it didn’t, and I ended up with sight loss.
So I’m always a bit sceptical about the “frozen shoulder syndrome” when I read it nowadays.
I absolutely understand and your advice pushed me to get blood tests. When they were -ve I was lucky to get an MRI through my works health insurance which confirmed frozen shoulder. It took about 4 months to freeze and 7 months in it’s still ongoing, but this isn’t the forum to complain. PMR is much worse xx
It is common for a diagnosis of frozen shoulder to be made in early PMR. But when the "freezing" is bilateral I wold be very sceptical when the opinion when the other way ...
Been there, it is so frustrating, especially when you are in pain. I have this forum to thank for pushing for PMR testing as I didn’t know the cause of my pain for months. Does nothing for your mental health! Hang on in there and go back to the Doctor if you don’t get any better. Hugs x
Hi, it definitely sounds like PMR to me. I was diagnosed in September and all your symptoms were exactly the same as mine. I was really lucky in that the Prednisolone was like a miracle and worked within a few hours. I hope you get some relief from it soon. There are lots of lovely experienced people on this forum who can give you great advice. Take care and good luck x
Lynda, my symptoms were pretty well identical to yours and I too did not respond to the 15mg pred I was put on. Doc would not increase the pred and the rheumy diagnosed RA and put me on 15mg MTX weekly. Two months on I am down to 7mg pred and have good days and bad days, never pain free days. I have stayed active with cycling and gardening etc which may contribute to the bad days but this has always been my lifestyle. Wishing you all the best, try not to let it get you down.
I too didn't respond to the initial dose of pred my GP put me on (I think it was 20mg)
A hospital doctor told me some people are resistant to pred, and upped the dose, which was then effective. I can't remember what she upped it to, sorry, and can't look it up at the moment (I'm ill in bed, not with PMR).
Then I started reducing, in larger steps then smaller ones (currently half a mg a month) but annoyingly I can't seem to get below 4mg. I was expecting to be off the steroids a year ago 😭
But I think you should ask for your initial dose to be increased if it isn't proving effective after a reasonable time (not sure what that might be).
Thanks Thezillionthsue- its good to hear from someone else who didnt have a miraculous response from the initial pred! Ill see how it goes over the next week and if there is no improvement I will mention an increase to the doctor and see what she says . Take care x
You aren't reducing relentlessly to a timetable and to zero: you are looking for the lowest dose that gives the same relief as the starting dose did. And 4mg is a really good, low and safe long term dose. It doesn't mean you won't get lower, just not yet.
EXACTLY like my symptoms... but I had good response right away with Pred. 20mg. however. I know it takes a while in some. let us know how it goes!!! hope by the time I write this or tomorrow it has improved!!!
Just wondered how you are doing now ? I went to see a Rheumatologist privately as gave up with the gp who sent me for physio and and basically laughed when I told him about the morning stiffness. My symptoms were EXACTLY the same as yours and normal bloods. I have now been on 10mg for 10 days and for the first time sleeping at night - it was painful turning over . I also feel like a spring chicken in the morning! Still having some pain with getting dressed /washing and drying my hair and reaching up. Did all your pain go?
Hi masieg- on 20mg around 75% of the pain went but it took around 11 days to get to that point! After 2 weeks my gp told me to drop to 15mg for 4 days and then 10mg for one month and to drop 1mg per month thereafter. I knew from all the sound advice on here that was a steep drop but I didnt want to ruffle the gps feathers as I had only recently been diagnosed and didnt want to seem as though I was telling her her job- thats just how I am- assertiveness is not a strong point! So I did as I was told! Needless to say on 10mg the old familiar stiffness and pain crept back in- so I rang the gp surgery and explained that I was in pain. So a different gp recommended going back up to 15mg and reducing by 1mg per month thereafter. So far so good! I wouldnt say I am completely back to pre PMR - occasionally if I forget and over stretch without thinking my upper arms will let me know- but from where I started pain wise to where I am now is wonderful. I can wash my hair and and put it up, I can dress myself and put my own coat on pain free!!! I never really got the instant miracle that some people mention but I guess we are all different. I think from what I gather that 10mg is a very conservative starting dose and id contact your rheumatologist and ask if you could try at least 15mg and see how you go. I wish you the best of luck and hope you get a good result. Ps I take my meds at 2 am for the best result. Take care x
Thanks LyndalouHe started me on 10mg because of my weight - I'm a runner so quite slim . I'm glad yours got better -I'm hoping when I see him in 2 weeks it will be almost gone !
Going to start taking mine when I wake in the night - seems more sensible rather than waiting for them to kick in half way through the morning !
See how you go, but if youre not getting at least 70 to 75% relief dont try to just put up with it,otherwise there is little point taking the steroids and all that goes along with them if theres no significant change. Its an odd condition isnt it? I wish I had raised blood markers as some kind of confirmation of the diagnosis! Feel a bit confused sometimes with it all ! Anyway onwards and upwards! Lets hope we are among the lucky ones who can hopefully ditch the steroids sooner rather than later and just get on with our lives. Good luck with your rheumy appt x
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