Hi, I came back from holiday with a stiff neck and shoulder pain it has lasted for 4 weeks .. I thought at first it was because the Airbnb I stayed at had only one pillow and I normally have 2 ... but when the pain didn't go away decided to see a Dr i should mention I have daily pain from a rotor cuff tear that they have said I am to old to operate on being 75 woman ..the only early appointment with a Dr was with a locum at a Sat clinic at another surgery, I explained my symptoms and she did an exercise test and when I told her I couldn't lift my arms above my head ...she asked if I had jaw or head pain I said no .... she said she wanted to take a blood test to test my ERS .... 2 days later my test came in on checking it my ERS was high ...so decided to see my DR but no appointment available and my Dr had not time to see my test ... They said they would phone 2 days later today she phoned and said she believed it was Polymaliga and she said to collect a prescription for a steroid course. I am concerned that in not having seen me and just on one blood test she came to the conclusion ..Surely more tests are needed before diagnosis and to be put on steroids ( with their side effects) as I believe polymyalgia symptoms can be mistaken and can hide different ailments ... am I right or wrong to think so ?
pmr help newbie: Hi, I came back from holiday with... - PMRGCAuk
pmr help newbie
Hello Dedikodu and welcome to this lovely and supportive forum.
To be honest it sounds about right to me. The description of your symptoms and examination by the GP and the ESR test is sufficient to diagnose. The final test is whether the steroids improve your symptoms (or deal with the inflammation). Some get full relief in a few hours (for me it was the next morning, 20mgs and it was miraculous) others over a period of weeks.
Many on here were made to wait for months and their symptoms became so bad that they were unable to function, getting out of bed, dressing etc.. a real challenge. I hope that you are not there yet.
Others with knowledge and more experience will be along soon, probably with questions as well as advice. Take care of yourself, if you do have the miraculous response be careful not to overdo it as symptoms may return, so rest as often as you can. Let us know how you get on. 💐
my doctor took a couple of months before my diagnosis was made. She thought it was PMR but wanted to rule things out first. I waited for an MRI and then had blood and urine tests. At this stage I was seeing her weekly and continuing to have ESR blood tests. After ruling out other things including myeloma she started me on prednisolone.
Hi and welcome.
You are right there are other things to be checked on but the symptoms and a raised ESR are really very suggestive of PMR - and your response to the course of pred is also a very helpful indicator. If it is rapid and dramatic, it usually means the suspicion is confirmed - the inability to raise your arms above your shoulders is very typical.
Yes, there are other tests that should be done but they won't be altered by the short time on pred - a full blood count for haematological disorders can be done later. If your symptoms respond well to pred then these concerns are reduced anyway. Many people were diagnosed over the phone during Covid so you aren't unusual.
If the pred doesn't work, they will have to think again - although first they need to try at least 20mg if they start lower. You only respond well if the dose is enough, at least 15mg. But for the moment, try the course of pred - it really is part of the diagnostic process.
Hello Dedikodu,
And this seems about right to me too. Doctors usually do Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP) - two blood tests and this is enough along with your symptoms. I had both results close to 100, when PMR started in 2020.
Another factor will be how you will react to Prednisone (usually 15 mg to start), the pain should be gone after few doses. With me all pain was gone after just one dose of Prednisone, next day I was normal person again.
Good luck and have good health!
The trouble with PMR is there is no way you can easily say someone definitely has it. It is a matter of deciding that it is not anything else and slowly eliminating all the other possibilities. Rather hit and miss. A good test is giving someone steroids for a week and seeing how they react. I read somewhere that only around 60% of people initially diagnosed with PMR actually have it. I am sure the opposite is true too that those diagnosed with something else actually have PMR. PMR can last a long time normally at least two years and often longer. You should start to take it easy and rest, rest, rest. PMR is very good at taking over and if you don’t go along with its whims it can turn round and bite you!
"I am sure the opposite is true too" - it is indeed. A study came to the conclusion that a similar percentage of incorrect diagnoses of PMR that wasn't and not PMR that was were made by non-specialists - mainly GPs it must be said. Adding up to something like 70% of diagnoses involving PMR ...
It does seem in that case that around 30-40% are misdiagnosed in both cases. I have heard that around 40% of ALL problems are misdiagnosed by GPs, so statistically PMR fits in with everything else misdiagnosed!! I should say that is at first visit. Doctors assume that you will come back if they are wrong, or you get better, or die!
Hi Dedikodu and glad you found this group! So much information and expertise and, more than that, support when you need it.
My GP diagnosed me over the 'phone - it was 2021 and I'd just had my second covid shot. No-one was seeing doctors. They did a blood test later but she prescribed Prednisolone at 15mg and that cleared any pain within about 4 or 5 days. I had never heard of PMR before but I looked it up and, sure enough, if the steroids clear the pain that can be used as part of the diagnostic process.
Your symptoms do sound like PMR and, if the pain clears once you have started taking the steroids then that would seem to confirm it. I was lucky that (a) she was aware of PMR and that she prescribed so quickly - it meant that I could function once more and didn't have to wait as some have.
I understand you wanting to check for anything else but I'd try the steroids first and see what happens. Good luck.
Sounds similar to me - I came back from holiday with backache and decided it was my heavy rucksack. Went to GP unable to turn in bed, night sweats, pains all over etc. Steroids worked like a miracle. If they work it is indication of PMR I believe.
Would just like to say that you shouldn't be afraid of Prednisolone because of possible side effects. Most people don't get any, or only very mild ones if that.
In my case I returned to the human race more or less the day after my first dose, and have had virtually no side effects from Pred, even though I've now had PMR for rather more years than I would like. The Pred has prevented the disease from taking over my life, and allows me to live more or less as I would have expected to live at my age (74).
So take the advice of the people here who know what it's like to be in your position, and don't be afraid of Prednisolone. It really is a wonder drug to those of us who have PMR.
I would like to thank the people who replied and relieved my initial concerns. I took my first dose of Pred four tabs total 20mg this morning with porridge and cinnamon as I have a gut problem ... I was surprised when I asked the pharmacist if they had gastro-resistant tabs due to as said my gut health problem they didn't do them ... they have been around its said for 60 years you think they could put modern gastro film round them... I will keep in touch and tell newbies etc how I get on.... what a nice community it's a pity we are brought together through pain....
PS I am normally an active person getting in my brisk 10,000 steps but have been a little fatigued since this Possible PMR ... I notice people have said i should rest ....does that mean I should cut down ...Also I being offered Phiso .... but last when offered this for my rotor cuff tear it made it worse and more pain ....is the PMR physio gentler or worthwhile .... thanks again
on exercise, my GP said look st the pmrgcauk information packs and website pmrgca.org.uk/get-support/i... and they say if you feel much better on pred don't think all fine, rush off and do as much as usual, maybe do half, and see how it goes in terms of pain and tiredness. 5 months in I can swim and walk without issues, thinking of adding yoga but i do need a rest midday. Advice I had here too, build up gradually, take rest days between more active days. Muscles can take longer to recover.
As you live in the UK, EC tablets are available - but think it needs to be stated in the prescription from the doctor.
If it’s just that particular pharmacy, then suggest you find another one that does stick them.
This lists all brands and doses -
bnf.nice.org.uk/drugs/predn...
You can still exercise, but maybe not as much as previously - certainly at the start - and not all in one go. So spread your walking out more during the day, and start at a lower number of steps for a while and build.
Physio - you need one that fully understands PMR. PMR affected muscles don’t like too much repetitive actions nor too much pummelling!
See this re exercise booklet from charity -
pmrgca.org.uk/information-a...
Plus maybe have read of this introductory post -
What an uneducated pharmacist - there IS e/c pred in the UK, it comes in 5mg, 2.5mg and, when you can get it, 1mg tablets for tapering. But as DL says, it must be stipulated on the prescription written by the doctor, you can't choose at point of delivery.
DL has said the rest - yes you can continue walking/exercising, but make sure you are not doing too much. We usually suggest starting with a much lower level than you are used to and rest the next day to assess if you have any sore muscles - if you don't you can add a bit and assess again, building up a few minutes a day at a time. The rest day is as important as the exercise day until you are sure you can manage. It is far easier for PMR/pred bashed muscles to develop DOMS (delayed onset muscle soreness) and then they also take far longer to recover. Ligaments and tendons may be a bit less robust too. Brisk is also relative - I can manage brisk for a 100m or so, then have to slow down if I'm going far!!
Physio - now there is a contentious subject. It is absolutely essential the physio understands PMR and I fear most in the NHS DON'T! They rely on repetitive strengthening exercises and they are often poison to PMR muscles. I found aquafit in a warm gym pool brilliant but starting at MY level, not that of the rest of the class, and after a lot of problems a few years ago it was a few sessions of hydrotherapy at the hospital pool that got me mobile again. The physio also did massage and manual mobilisation of the trigger points where the inflammation is focussed and painful (you may feel worse before you feel better and it isn;t for everyone) - but I don't live in the UK and we have amazing, mostly German-trained, physios here and, like almost every healthcare professional I have come across here, they actually KNOW what PMR is. In the UK even medical staff go "What?????", think you mean fibromyalgia and will even assert you have fibro or it turned into fibro (no it doesn't).
I am now on my second day on Pred and have got movement back in my neck the pain has dissipated a little. I take the third dose today and then tomorrow the Dr will phone for an update and I hope a further blood test to see if the ESR which was 131 has gone down.
I know that I haven't had a definite diagnoses of PMR but I have read of a supplement called Kurk also known as Vitality has anyone had a experience with it? or is it just another expensive con ? thanks in anticipation ...
looking at price, I wouldn't waste your money - or at least not until you know what definitive diagnosis is..
It is just turmeric in a fancy formulation really. I know quite a few people who swore by it used in cooking, especially with garlic and/or ginger - all natural antiinflammatories. But I also know quite a few who found the much higher doses in supplements caused adverse effects. There are contraindications - can't take it with anticoagulants for example, and it can worsen gastric symptoms. Dietary turmeric is usually OK though.
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