Thank you everyone for all your replies, each and everyone has helped me to have a better understanding of PMR and steroids. My doctor said he would phone today to see how I was going with the increase to 20mg daily. It’s been two weeks and I’m still experiencing pain in the backs of both thigh muscles and sometimes across my buttocks especially in the evenings and nighttime, first thing in the morning . It’s not stiffness and is no way deliberating, I don’t have pain or stiffness anywhere else. I know last week he said because I have normal inflammation markers he was beginning to think I didn’t have PMR. When I first went on 15mg daily I went from not be able to dress properly, walk properly to being free of pain! It was only when doc said to taper that things seemed to go wrong! Can this be PMR with just my thighs in pain? Should I ask to be referred to a rheumatologist? Any help or advice, I’m quite nervous of what he is going to say. 🙏
PMR and pain in thighs: Thank you everyone for all... - PMRGCAuk
PMR and pain in thighs
Hi,
I certainly experienced pain at the back of my thighs when first diagnosed with pmr. I can remember it well because it made driving very uncomfortable, let alone trying to get upstairs! It took three weeks on a relatively high dose of prednisolone to get this discomfort under control.
Thank you for sharing 🙏
Relief from PMR pain and stiffness should be at least 70% of the level of pain at the start if you are at the correct dose, but you do have to help it by pacing yourself and not trying to return to the level of activity you had before. Splitting the dose can help with 24 hour relief and worked very well for me. Maybe discuss this with your doctor today.
Thank you have that on my list of questions just nervous he is going to dismiss PMR because of low inflammation markers 🥴
we’ll just spoken to doctor. He said I had to reduce from 20 to 15 mg today, he also said I wasn’t to stagger my steroids, he still isn’t sure that I have PMR as inflammation markers are normal. I asked about a referral he doesn’t think that is necessary and is going to see me in three weeks time. I’m really quite nervous now, so let’s see what the next three weeks brings ☹️
Okay - well good luck, and suggest you keep a diary so you can report chapter and verse next time you speak to him.
I keep a daily journal however I’ll make sure I keep a record of how I feel, aches and pains etc 🙏
Good - just seen your reply to PMRpro on where you live.. a quick trip to Chertsey to see our “go to Rheumy’ could be on the cards . Will leave her to provide info …
🙏
Hamstrings can be involved in PMR and trochanteric bursitis involves the piriformis muscle which would cause all the symptoms you describe - and very common along with PMR. Look up some stretches on the internet - that will probably help.
Up to 1 in 5 of PMR patients don't have raised markers - or at least, not raised above the magical "normal range" they are so fixated about. Normal range isn't a range that is normal for an individual, it is the range seen across thousands of patients. It is the range of readings seen in a very large population (10,000 is a common sized group) of nominally healthy adults and which includes 95% of the subjects. 2.5% will be lower, 2,5% will be higher - and still OK. But that also means that some who ARE sick may have very low readings or who aren't sick have high ones, My ESR trundled along at 16-18 for weeks during a dreadful flare where I could barely move - MY normal is low single figures so it was very raised for me but not outside "normal range" so no-one turned a hair. I still have symptoms after 20 years - that doesn't mean it isn't PMR, my internationally recognised as a PMR expert rheumy is confident enough it is, I am just an outlier. I had a response to pred just like yours - and whatever it is, it looked like PMR and behaved like PMR. Ergo, it most likely IS PMR. Nothing else has appeared in that time to suggest anything else.
Here is some reading for your GP - it isn't just patients saying this:
ncbi.nlm.nih.gov/pmc/articl...
journals.lww.com/md-journal...
Thank you so much for your reply and information, I’m feeling very low at the moment, it’s just so confusing and exhausting. I’ll read attachments and see how I get on. Thank you again 🙏
We know - especially when you are given a glimpse of what could be a better QOL and then the GP develops cold feet.
If you meet with a lot of resistance from him, a single private appointment with a carefully selected rheumy might convince him that you do fit the picture for PMR. It may be worth considering - are there other GPs in the practice? Sometimes that can help too,
Yes I’m considering looking to see how I can get an appointment with a rheumatologist 🙏
Where are you?
West Sussex
Is Chertsey an option? Rod Hughes is an excellent PMR rheumy and not blinkered with regard to age, blood markers and not entirely typical presentations. Several on the forum go to him.
I’ll certainly look him up 🙏
finder.bupa.co.uk/Consultan...
And I have this number for him
02 07031 3403
But contacting Jody Evans his secretary by email is probably your best bet.
🙏
West Sussex
hi I do commiserate with you as I have bad aches in hips etc as I am reducing. Now using a walking stick when needed. Have given it a month from 9 to 8,5 but aches persist. My gp didn’t think I had it as markers not raised much but a day of not taking steroids by mistake soon showed me I was back to square one with not being able to climb stairs etc. I have now seen 2 rheumatologists (one privately as 8 month wait NHS)- 1 every 6 months but feel I’m battling a bit on my own so do understand how you are feeling. Havent seen GP since diagnosis. This website is really helpful. I’m 9 months in and just wishing I could reduce the steroids but know it’s a slow process. Osteoporosis now diagnosed so having to take AA. Pretty fit till I turned 70 but think too many virus jabs triggered my immune system. Take it a day at a time - it might help.
Thank you for your support and understanding. 🙏
If you decide to see a Rheumatologist privately do take advice from this forum. Many of us have had bad experiences with rheumatologists and PMR a is notoriously difficult to confirm, inflammatory markers being only one of the determining factors.
I suffered debilitating pain in my lower back and legs which was thought to be sciatica and treated with increasing amounts of pain relief until finally my ESR and CRP were tested and BINGO, I started pred.
Your doctor is being cautious in starting you on steroids which are known to cause a lot of unwelcome side effects. A short sharp use of them at a high dose might be an experiment by him and will not lead you to a life of tapering doses, but if it is PMR you will need them for as long as you need them. So I understand why your doctor is looking at alternatives and I hope you will be encouraged by that and not feel too gloomy. We have all been there, and your name suggests you are normally a “sunny” personality, so try not to stress about it when the sun is shining, xx
Thank you your reply has helped me as I’m feeling low at the present time. Just need to get my head round this 🙏
My very first PMR symptoms were in the backs of the thighs, running horizontally across, and also in my buttocks, just like you. I went to PT thinking I had over stretched those muscles and began exercises that did help. Then a few weeks later the excruciating bi-lateral shoulder pain began as well and I was eventually diagnosed with PMR. My blood values have always been normal so my rheumatologist was hesitant to begin steroids without seeing inflammation on a PET scan. I am now at 12.5mg of prednisone and just began Kevzara one week ago as well. Good luck.
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