Hi everyone, always wonderful supportive advice on these groups ! I’m struggling at the moment getting a confirmed diagnosis of PMR , and consequently being put on steroids. I have all the classic diagnostic criteria, acute onset back in Jan of pain and stiffness both shoulders, am 65 year old Caucasian female with another autoimmune condition ( Hashimotos) fit and well in December, now struggling dressing , showering, terrible nights, extreme stiffness and pain until mid afternoon etc etc . Have read the book after joining the group 2 weeks ago . Finally saw the extended scope practitioner at my gps 4 weeks ago and he agreed it was a classic case . BUT my bloods came back without raised inflammatory markers !!! Unbelievable! So he’s changed tack and prescribed naproxen , despite my protestations. Even the NICE guidelines say try steroids and see what happens if markers are normal . I’m at my wits end . Having seen SEVEN different Physio’s , osteopaths , Chiro s in the last few months and nobody suggested PMR . It all seems so obvious now . Have others struggled to get the right treatment ????
Struggling to get the right treatment ! - PMRGCAuk
Struggling to get the right treatment !
Also have to fess up as it’s on my profile , that I’m a retired physio and had never heard of PMR ! In my defence I never really worked in musculoskeletal skeletal medicine !!! I spent the first 2 months trying to sort myself out trying exercise but epic fail ofcourse. Frighteningly none of the other physios etc I eventually went to ever mentioned PMR which is shocking .
I had a very similar set of symptoms. I got to the point I could hardly move. The GP said I had a virus and it was “nothing serious”. I went to a rheumatologist privately in the end. 20% of people never have raised inflammation markers. It seems that a lot of medical people are unaware of this. Does Naproxen work for you or are you still on steroids? Did the steroids work?
Thankyou for your reply 🙂 The Naproxen was awful! Took it for a week to basically show I’d tried but it made me feel sick and had a permanent headache . I’ve made a private appointment to see a rheumatologist but first available was 8th July . So here I am again at 4 am trying to pad with pillows to relieve the pain and get some sleep 🙄 I’m going to go back to my gp this week and beg to be put on steroids, like the NICE guidelines say !
Hi Romilly2,
I'm so sorry you're having to endure all this pain and discomfort.
I obviously would never advise anyone that their GP is wrong and I can't diagnose whether you have PMR or not, but I do know your symptoms all sound suspiciously like PMR.
I have suffered from PMR for 3yrs and none of my blood tests have ever shown raised inflammatory levels! That is why a diagnosis cannot & should not be made based on blood test results alone, but on symptoms also.
I think you definitely need further discussions with your GP and possibly need to show him some of the relevant information from FAQ'S to support your differing opinions. If this also fails to bring about a change of treatment plan that you're happy with then request to be referred to a rheumatologist for a second opinion. You are legally entitled to do this!
Thankyou Kendrew . Yes I’m emboldened now with more information so will tackle the gp ( or extended scope practitioner who seems to be the gatekeeper 🙄) I have a private rheumatology appt in 3 weeks as back up !
What in the name of goodness is an "extended scope practitioner"? Another name for cheap doctor substitutes?
Someone who has another sort of ESP - Extrasensory perception?
Another government wheeze😂🤣
That would seem about right, they seem to appear in Physiotherapy and Orthopaedic scenes but couldn't find them elsewhere. (Quick Google search). Do like DL's suggestion though it at least the ESP bit.
Perhaps some of us already have it! 😉
Highly likely, come on, if Goddesses don't have it then no hope for the rest of us!!
Thought you might say that! 😊
Early in PMR I was sent to an MSK clinic - run by a physio with an extra bit of paper. I was asked to touch my toes - and on that basis he informed me there couldn't be anything wrong with my back, he couldn't do that! I refrained from saying the state of his hamstrings were nothing to do with my problems. At nearly 70 I can still touch the floor, almost get my palms flat - it's part of hypermobility and my doctors here identify it immediately, can see the scoliosis that has been there for a very long time - and which was missed by at least 2 UK doctors.
OTOH - my daughter saw a knee specialist at JC in Middlesborough but the first appointment was with "his" physio. We were a bit annoyed at what felt like demotion - but she was amazing! Again - took one look at the x-ray and sent her for the one-stop MRI imaging then explained why she could do physio until the cows came home, it would never "cure" anything in her knee. The surgery has kept her going until a few weeks ago when it popped out at work - conveniently in the ED!
I guess it's a bit like doctors, your're either lucky or you're not
Yes he’s actually a Physio . It’s a role carved out I believe as often GPs haven’t had much exposure to a wide range of MSK conditions. In theory it’s a good idea as they should have more knowledge in this area . Unfortunately I don’t think they have absolute clinical autonomy , as on both my blood test request and prescription it had the doctors name . I thought he was 100% agreed it was PMR , but then the blood results came back . I was so aghast he said , good news everything is normal , that I didn’t say on what basis / diagnosis are you prescribing Naproxen then ? ?? He gave the impression he discussed with the doctor about the patients he saw.
It sounds like the Naproxen did not even work as a painkiller? It just made you feel ill. I do hope you can get your GP to allow you to take steroids for a trial week perhaps??? I still think about the excruciating pain I was in before being diagnosed with PMR. I did not dare move when in bed.
No the Naproxen was no good at pain relief but just caused more problems. I’ve gone back to my cocktail of Brufen 600 ( bought over the counter in Dubai in quantity ) Paracetamol and by 7 pm , 2 glasses of wine . My liver and stomach will not thank me but it gives me a couple of hours slight relief in the evening until Groundhog Day starts again at 3.30 am 😩
Hi,
Have just replied to another thread re bloods so will copy here -
Depending on what study you look at the number of patients like you with unraised inflammation markers vary between 7-20%. Unfortunately because raised markers are listed as a common symptom, many doctors are side tracked by the readings and some patients struggle to get diagnosed initially, and also treated for flares along the way.
Which is why we always say-symptoms, symptoms, symptoms.
Do hope you can get your GP to give you a trial period of steroids whilst you wait for Rheumy appointment.
Thankyou DorsetLady . It’s wonderful supportive groups like this that keep you sane !
Sane! What’s that pray? 😉
🤪🤪🤪🤷♀️😂
Hi any advice had weak arms and hand feeling like there no my arms hand been like this for 2month now on steroids15mg just gone down to 12.5mg is there any other medication they can give me to sort out weakness still waiting to see Rheumatologist since March what advice any one can give me thank you
Hello, Bowred. It might be better if you posted your question on a separate post as it may get 'lost' amongst Romilly's. 😕
I've had a look at your previous post as this rang a bell. I see that PMRpro replied. It might be useful for you to look at that again and check that you haven't been aggravating things by heavy lifting etc.
Hi thank you for your reply it just get me down to be honest not sure what worse feeling like my arms and hand so weak or intense pain in arms hands
My daughter has sent email to hospital to rheumatologist been waiting since March hopefully with this email sent May help to bring appointment forward just don’t understand waiting time
"just don’t understand waiting time"
They have the best part of 2 year's backlog to catch up on and there are only so many new patient appointments per clinic.
Something many patients comment on is not so much that their arms are weak but more that they don't do what you want them to! Doctors also get confused when patients say their arms or legs feel weak - objectively, measurements say that there is no muscle weakness with PMR. It is something we have tried to work on - this confusion in terminology between doctors and patients,
Of course. It's difficult to function when in intense pain and that's mentally as well as physically. I'm sure that many will relate to this. I hope your daughter's email to the rheumatologist results in action. 🤞🏼
Up to 20% of patients do NOT have raised inflammatory markers - mine have never been out of "normal range" although the ESR has been raised for me, running at 16-18 when low single figures is my normal. Part of the problem is that doctors do not understand "normal range" - it is the range of readings that includes 95% of a large population of apparently healthy subjects, not the range that a single person can have, so having a reading that looks "normal" in the resence of symptoms should NOT stop a diagnosis of PMR.
It took 5 years for me to get offered pred despite textbook PMR symptoms, except for the inflammatory markers. When I finally got pred - just for 6 weeks to help me through a business trip to the US - I took 15mg of pred standing outside the pharmacy having picked it up. Less than 6 hours later I stood up from the computer and walked downstairs, made a mug of tea and carried it back up normally - in the morning I had been crawling up on hands and knees! The rheumy didn't want to hear but another GP than the "failed" one decided it was PMR and continued the pred.
Gosh PMRpro that’s shocking ! 5 Years !! It even says in the NICE guidelines try steroids and see what happens.!!
Yes - but PMR never figured on the radar until I spent a LOT of time online and finally worked out what it might be myself, The GP who'd failed to spot it still refused to do anything until I had seen a rheumy - and the rheumy I saw was still sceptical after he heard the response to pred.
Yes we actually really have to take responsibility for our own investigations , a shame medical professionals don’t embrace that . Sites like this are a lifeline.Glad that you finally got to the bottom of it and got the steroids 👍
It was only after I found this forum that I worked out that I had Palindromic Rheumatism and was able to convince my rheumatoligist what my condition was. Surprisingly he was very appreciative of my self diagnosis and agreed with it.
What is palindromic is it similar to PMR
No, it is an inflammatory arthritis so affects joints but its special feature it moves around from joint to joint and sometimes only appears for hours before disappearing again until the next time. It can last a lot longer though - strange disorder!
versusarthritis.org/about-a....
It can have a polymyalgic presentation - any inflammatory arthritis can - and there have been a few people on the forum with it but misdiagnosed as PMR
5 years, that is terrible. We really do need to be expert patients. I was watching a doctor presentation for medical students the other day on UTUBE, like you do! And he was spouting the NICE guidance about inflammatory markers and reducing pred too quickly, in my opinion. Really what hope do we have? I was told by a specialist nurse to stop my pred for a week prior to a synactin test! Luckily I am found the correct info and made a complaint. I still have ‘suspected’ PMR on my medical notes/letters 3.5 years later! I do worry about the more vulnerable people of our society who are not aware of how to find out more appropriate information. I was speaking to an elderly lady (80+ yrs) , who had to stop her pred within 1 year of diagnosis in the instructions of her GP, her story told me she was incorrectly treated, she is of that generation that believe everything the Dr says. I believe there are many more elderly people who could have a diagnosis of PMR (reduced mobility) but do not know about it . I really would like to help more now I am retired, but not sure how.
Joining the charity is a start - they do represent us in various situations and undertake campaigns to bring PMR/GCA to notice. There is to be a GP education programme funded by the former NE charity - the only thing that worries me is what they will be taught! However, Prof Mackie in Leeds is better up to speed than most and she is involved.
Also who will be teaching them??
Suppose how it is done - if it is remote learning, maybe Sarah and Max!
Hope so, something has to change, and asp, the amount of people that come on here with their "holier than thou' Rheumies instructions is pretty shocking. The amount of pain people are in just doesn't seem to bother them. I used to think it was because there is no definite blood test r esult....but my sister with R A is zero negative, but having still being prescibed Sulpha salazine, she admits she is better off than me.....gets some pain, fatigue, but she won't have the adrenal struggle...Anyway, fingers crossed things will change, if it's down to Max and Sarah it will happen....🙏
Yep, me too. Doc was treating me for osteoarthritis. Had to go private to get diagnosed. £4,000 later. Do hope you manage with your steroid treatment and don't go on to get GCA...sadly many do and I being one of them.
Like you, my symptoms all pointed to PMR but my markers were normal. The GP wouldn't prescribe steroids though all the papers and one phd thesis I read said that one diagnosis was if steroids gave almost instant relief. I went against all advise and took my granddaughters 4 yr out of date prednisolone and couldn't believe it when that night I was able to move again. A letter to the GP got me a prescription and a few months later the rheumatologist put it down as atypical PMR. I am now faced with the dilema of taking alendronuc acid which I really don't like the sound of, especially as I have reflux.
Are they prescribing AA "just in case" or do you already have osteoporosis? The "just in case" scenario can be avoided, and so can taking AA in nearly all cases unless you really are in a bad way bonewise. My doctor wanted me to take AA. i insisted on a DXA scan which resulted in a recommendation to take the med because I had several risk factors other than prednisone (previous fracture, low bone mass = osteopenia, and age). I refused and with the aid of appropriate exercise and a few judicious supplements I actually improved my t-core from -2 to -1.6 in a year.
Thanks for your reply. I've no known bone problem and there's no family history of osteoporosis. I am 73 but play tennis, garden walk and am fairly fit. They are prescribing it as a precaution but have not mentioned calcium tabs or other supplements. Also it wasn't until I read these posts that I learnt AA shiuldn't be taken if you already have reflux
If you can, you should insist that you have a DXA scan before starting any medication even if they agree to one that is less likely to cause esophageal problems. There are other concerning side effects with them all, and if you don't need them, better to avoid altogether. I wrote an account of my experience which you can read here:
If you have reflux - AA is contraindicated. It isn't the only option, there is oral risendronate which is slightly better or annual infusions which cuts the gastric problems out altogether.
Anyone would think it was rocket science ...
Many thanks. I'll enquire but the previous GP, though very pleasant, didn't want to offer anything other than AA. He couldn't see the benefit of getting a scan done!!!! Easier to throw a tablet at me I suppose
Just getting confused as my thread seems to take on a life of its own ! Just logged on and saw the phrase AA and thought it was in response to my 2 glasses of wine . It’s a mine field 😩 Realise now it’s another subject altogether that I need to Google !!!
You do need to look at the reply carefully - next to the name of ther person replying you will see who the reply was directed at. If nothing appears - it is to the originator of the thread.
AA- nhs.uk/medicines/alendronic...
Threads often wander -and nothing to do with the amount of wine consumed -although that is often mentioned😊
😊😊
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