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 🥴
Of course your inflammation markers are returning to normal ( whatever your normal is) it’s because the steroids are reducing the inflammation. Some doctors don’t seem to understand the first thing about steroids !
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 …
🙏
My advice is just stay adamant to what you end up discerning/feeling in 3 weeks. Remember, they work for you, not the other way around.
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. 🙏
To be down to 8.5 after only 9 months is IMHO much too quick a taper so no wonder you’re struggling. You should still get the pain relief you got when first prescribed steroids, if the pain has come back it’s because you are on too low a dose to control the inflammation. To borrow PMRpro’s analogy the untreated inflammation will build up like a dripping tap into a bucket until the bucket fills and you have a flare.
Best wishes
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 🙏
Hi, can the pain in the buttocks, hamstrings and trochanter be one sided. I have had pmr for 6 yrs and the bucket dripping effect has caught me I think and back on 5mg which still don’t think is enough but Gp saying stay there till rheumatica NURSE appt - yes nurse. I have terrible pain in one side which never goes but not bilateral? I am still stiff in shoulders and girdle but am managing
When it is one-sided I think it tends to be myofascial pain syndrome on top of the PMR - they do often go together and are caused by the same inflammatory substance, IL-6, but it is forming trigger points in large muscles (hard knots of muscle fibres) and inflaming the muscle fascia. The trigger points make the muscle tend to tighten to protect itself and in the low back and buttock can irritate the sciatic nerve. Trochanteric bursitis is also quite often allied with PMR.
My rheumy uses NSAIDs with a PPI for the stomach and I find a hot water bottle over the painful area helpful. Piriformis stretches and exercises for trochanteric bursitis may help. They don't sort mine but do ease the pain.
Fascinating thankyou. My revered orthopaedic consultant says piriformis syndrome doesn’t exist. Yet other countries operate and many scholarly articles. UnfortUnfortunately when I take ppis I bleed internally so wont take. But thanks for the advice. What a disease it is
That's nice of him!! Personally, I don't care what it is called but there is something that a lot of people CALL piriformis that improves with the treatment suggested for it. It is called empirical medicine!!! (Empirical medicine is a treatment that is based on experience and observation, rather than systematic logic, and is used when the cause or nature of a disorder is not precisely known."
Can you take H2 antagonists like cimetidine? If not - NSAIDs with a proper meal for a short period are likely to be OK. Even if it is just an 800mg flooding dose of ibuprofen once which is what I do when this cycle sets up and I can't move.
At home in Italy I get extracorporeal shockwave therapy for trochanteric bursitis which is amazing - not fast as it takes a few months altogether and very noisy but it stops the pain and has NO side effects. There are physio depts in the NHS that use it I think - and private offerings.
Not heard of physio treatment. I have been taking Ppi for 20 yrs for a sliding hernia. My issue is I cant sit which is entirely necessary with feet pain. Tends to ease if stand which tells me it’s squashing the nerve when sitting. The same dr has diagnosed me with wear and tear🤣🤣🤣🤣. All this started after a near fatal cycle crash yet it is wear and tear. My broken shoulder and forearm and serious head injury were “ viewable” the buttock and leg pain hidden. Thanks for the heads up. I only have to take one 500 mg and get a bleed top or bottom so am very cautious. I was never on high doses of pred to know if helps but doesnt on low
Fair enough then - better not use it, sorry, I misunderstood what you meant. Sounds like your doctor sees what he wants to see!
It doesn't just sound like "wear and tear" to me - can your GP not give you access to some physio to see if they can provide some relief? Stretches and heat often can make a difference.
I ve had physio, acu, chiro and massage without avail. I find the stretches nigh on impossible due to my skeletal problems. Had it for 2 yrs since the accident. Guess am stuck. Thanks for input. Lots of other countries will operate to free the ligament that traps the nerve
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.
Thank you for sharing 🙏
I think, judging only from a quick look at your previous posts, that expectations for tapering are a bit too high. PMR can last a long time. Pred is not a cure, only a medication to control the symptoms, mostly because it is a strong anti-inflammatory. If your PMR is still active, which after only a couple of months it's likely to be, tapering should be done with the utmost caution. What you might in the normal course of life consider slow can, in relation to dealing with PMR and pred, be too fast. My recommendation would be to stay at your higher dose of pred and exercise patience, especially as you initially did so well at 15 mg. It can be hard to get a handle on things if a flare develops too quickly after starting pred, generally because of too rapid a taper.
Hope you soon get things sorted.
Oh, and judging from what I've read on the forum over the years (never having had the experience myself) I'd not be too quick to see a rheumatologist.
"It isn't slow if it works."
Such a learning curve, so much to consider 🙏
It is indeed. When I was first diagnosed and had such a brilliant reponse to 15 mg pred, and then easy taper (after five weeks at 15 then dropping 1 mg a week) I assumed I'd been cured and would be done and dusted in three months! Well, little did I know! My doctor had failed to tell me that pred would only dampen the symptoms. However, when pain started to come back at 9 mg I went on-line in the middle of the night, asked if it would be okay to up my dose (my doctor had only told me to stop tapering if I had pain) and found the answer in a forum rather like this one.
The answer as I understood it was to go back to where I was okay (10 mg) and after stable again taper MUCH more slowly. Worked a charm, but I was lucky, and returning symptoms were hardly more than niggles before I increased pred.
It took me years to get to zero, but most of that time a small dose sufficed.
Really hoping I’ll get there too! Early days I guess 🙏
Here's a little account I wrote years ago about ambivalent relationship with pred:
I tried a couple of things to help with the pain before I knew about the PMR. deep tissue massage - however now knowing more I would ask them to be very gentle as the muscles need to recover. Baths with Epsom salts - I don't like baths but this really did help. I also bought a small massage gun - again I would be careful now knowing about PMR and keep on lowest setting I bought a Lola one as easy to hold.
before I was diagnosed with PMR 4.5 years ago, I had pain in mu buttocks and hamstrings (in fact sitting in the car I struggled to get comfort - although I’ve not much padding on my bum at all🤣)
Was diagnosed with PMR (over the phone) and put straight on 15mg. Within a few hours my pain had greatly subsided.
These years later I’m currently on 2.5 and suffer aches & stiffness in my fingers, but don’t know if this is ‘cos I’m that much older, and I’ve now been diagnosed with osteoarthritis in my right knee. My CPR last month was 0.08.
Good luck on your journey and just listen to all the wonderful people on here. We’re all in this together.
Not what you're looking for?
You may also like...
PMR and Parkinson's Disease
Pmr and diabetes
Prednisilone to Methotrexate/ private Rheumy/too young for PMR.
PMR and foot pain
Hip pain , pelvic muscle aching , knees and thighs
Related Posts
In PMR is there pain or no pain when not moving?
PMR or not?
Relapsing PMR
PMR and muscle spasms
Has any one with pmr had awful pains and stiffness in the pip joints in their handsModeration team
