Hi All - would be pleased to hear from people who are, or who have been in same boat!
Clear cut diagnosis of PMR 9 years ago - CRP was 20 - dramatic improvement with high dose of Pred. Obviously dropped down to 'sensible' dose. Areas of pain back then - neck & shoulders & hips/buttocks.
Several years on approx. 7 or 8 mg Pred. Found reducing very difficult.In recent years done quite well on 5 mg, but GP always pushing me to reduce.
In recent years, pain in hips/buttocks not neck & shoulders.
Currently in throes of a flare & 7 mg not controlling pain. Spoke to Duty Doc at Surgery y'day - he analysed CRP Readings for the last year & is querying if am still suffering from PMR. By chance was booked in for routine blood test today & he said this will be extremely helpful in revealing state of play! Due to speak to my own GP to discuss results next week.
The Duty Doc is suggesting I might have Fibromyalgia or Osteoarthritis..... would be delighted if no longer PMR, purely because I'd be pleased to come off Steroids - as I'm sure we all would, in an ideal world!! If it turns out to be something other than PMR - a) will it be treatable? & b) will be disappointed to have been on Steroids, possibly unnecessarily for some years!
All thoughts/comments welcome - thanks!
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Dottidevonian49
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I can totally relate to what you are saying. Diagnosed with PMR 13 years ago, because of ongoing pain and fatigue Rheumatologist ordered a PET scan 2 years ago....it showed no inflammation......con sequently Fibromyalgia was diagnosed, horrendous pain/fatigue and very difficult to tolerate meds!.....PMR does go after a certain amount of years, different for everyone....but Fibro, no end to it!....I am still on steroids, Rheumie thinks I possibly have both....but given a choice I know what I would rather have!..
I don’t have your ‘length of service’ as it were, but had a definite diagnosis of PMR plus probable GCA four years ago. Was on 40mg then, now on 6.5mg. Like you my CPR is low (1-2) but I feel that can be attributed to the dose of pred.
Rheumy and GP both say I have OA and I agree. It seems tome that I have both PMR and OA. Some pain is addressed by pred, some by codeine and paracetamol.
It’s very possible to have more than one condition. Obviously I hope this isn’t the case for you 🤞 x
The key to me for PMR verus other diagnosis ( although I have some as well) was the early morning 3 am extreme pain all over. Waking up feeling that to try to get to the bathroom was going to take a lot of effort and pain. However by the end of the day having moved, I was getting less symptoms and could feel 85% better. Also the pain was even between the 2 sides of my body, both shoulders, both hips, did you have this?
Look at the results of your blood test with an open mind. Your results will be normal if your dose of Pred is sufficient to "mop up" the amount of inflammation being produced.... think of a balanced set of old fashioned scales. Alternatively, they may be normal because your PMR has gone so no inflammation is being produced. But, ESR and CRP may be raised for other reasons. This is why symptoms are so important and the whole picture should be considered. I hope you are able to get some answers soon.
There are doctors who seem to have a fixation with the idea that PMR "morphs" into fibro - personally I don't agree with them but what can happen is that your immune system and your body "learn" the behaviour patterns in PMR and hang on to them. You get progressively deconditioned and that can make muscles ache. But there are other possibilities. It is well known that diagnoses made by GPs are notoriously unreliable - about half are not PMR and they also miss PMR that is.
Don't be fooled by the symptoms changing - I've had PMR for some 20 years and some of the places affected changed with each flare. My flares of disease activity happen after I have been stable at a dose for some time but I have never got to zero. At one point I needed nearly 20mg to be pain-free and function well but being put on tocilizumab/Actemra reduced the pred dose to 7mg. Whatever it is I have obviously involves the IL-6 inflammatory substance - but also something else that still needs some pred, 7mg is great, 6mg lets bicep tendinitis develop within a few weeks.
PMR isn't the disease - it is the name for a set of symptoms that has an underlying cause, there are several. One can be what is called a polymyalgic onset of an inflammatory arthritis. In the early stages of LORA, Late onset RA, it is impossible to tell the difference between PMR as we mean it and LORA - there have even been studies! I suppose this could give the impression that PMR turns into LORA but I'm not convinced. You can have both of course.
However, at the present - if you are like me, you may need more pred as the PMR takes an upward swing. The test has to be whether MORE pred reduces the pain - if it does, it is something inflammatory and not fibro. But if you have had a lot of relatively pain-free years so far - then the pred was not in vain and the pushing you to reduce may have been the cause of the situation now. For some of us, whatever it is lasts a long time, sometimes for life. All that can be done is manage the pain and other symptoms. I've been on pred for 16 years and it has given me a better QOL and enabled me to do things I couldn't have without it. So don't ever feel that sort of regret,
However - the other problem you will meet is adrenal function. At 6mg I can get by in that respect, at 5mg I am more fatigued and struggle with any stress. Long time since I got lower than that!! And that is also going to be a slow journey for you with no other options.
But I would want to know what happens if you treated this as you would have treated a flare a few years ago - when you wouldn't have questioned needing more pred.
I have both fibromyalgia and polymyalgia. If I could choose one it would be Polymyalgia. I’m partly biased by the fact I can’t take the tablets that help fibromyalgia! But fibro goes on for ever, & involves many varied challenge. Polymyalgia usually/nearly always improves, goes away. Steroids are horrible, I get that.but nobody seems to realise how lucky us PMR sufferers are!! There is a drug that lets you live your life again. Maybe you can no longer be an Olympic cyclist, but we have a lot of posts from people travelling the world on holidays, & living a fairly normal life while knowing it’s not forever that things will be a bit difficult. I’ve put on 3 stone, I’ve had a lot of adrenal issues, I sweat so bad I drip, & our marriage has been on the rocks due to my moods & instability, but these can be worked through, & do resolve. Just my thoughts, sorry if they are gloomy! I have hypermobility & my kneecap dislocated during a fall two weeks ago. I’m on crutches, in a lot of pain, I’ve got a lot of ligament/tendon damage & we can’t go on holiday (cancelled four last year, none due to PMR). Guess I’m trying to say that each ‘disease’ brings its only challenges, & for me anyway, PMR does not bring as many as others!! I’m grateful for it!! I hope you have PMR, but there are drugs & help groups for fibromyalgia! Good luck!
totally agree with Pixix. FM on its own (15 years now) was just about bearable, unless I have a real flare. Add in GCA + PMR and it not only muddies the waters, but is truly debilitating. 2 days' ago arthritis in spine was confirmed. My hips' buttocks and spine went into spasm as I tried to get out of bed. Couldn't move so wet myself. Now awaiting further appointment with GP plus physio. Rheumy nurse not interested in back problem - says it's a GP matter. Holistic approach? - NOT! Also wants me to reduce pred asap (currently on 11mg). I don't think so ...
Ouch - been there but not quite as bad as peeing myself but I did need an ambo to take me to the local hospital, not in the UK I hasten to add. The ED was useless, just a tramadol infusion that did not a lot, but luckily I had a rheumy appointment a couple of hours later and they took me round there and HE sorted it out. At the time, there was no sign of a fracture but a year ago they did find one - despite a perfectly reasonable dexascan. MY rheumy considers something like that HIS business.
Have you been sent for an x-ray? A common cause of back muscle spasm is spinal fracture and it MUST be ruled out as both I and tangocharlie will attest.
Hi thanks for swift reply, PMRpro. The lumbar XRays were "inconclusive" re fracture possibility, but picked up the arthritis. Will phone GP Monday as pain getting worse. Taking max doses of paracetamol plus dihydrocodeine, rubbing in voltarol 3 times daily. I've been told to keep moving - potter around house slowly but not bending down more than I have to, and walking a total of 400 yards per day. But I'm wondering now whether the walk is wise. O dear, have even lost my sense of humour this time.
Was it a sideways x-ray? And there IS rather more of the spine than just the lumbar region! I think (not sure) mine is a thoracic compression fracture.
Hi PMRpro. One sideways and one frontal xray. Am learning to breathe through the pain. Will phone GP surgery Monday. Thanks for taking an interest - I feel very alone and weepy atm.
I happen to have a pair of crutches which I make use of as required - achilles tendon problems, back pain for example. It helped a lot when the back pain was particularly bad - not least because you tend to lean forwards to try to relieve the pain and relieving the strain on your back muscles makes such a difference, If it is muscle - a hot water bottle should help. If it doesn't - they need to do more than just say take painkillers, the UK answer to everything!!
Thanks PMRpro. I shall use my sticks till I can get proper crutches. Heat doesn't seem to help so think I'll ask for further xray or maybe scan. Wish I hadn't sent daughter's crutches to Ukraine! Never mind, I can still knit for them.
Many thanks to all of you who've posted comments re. my post about diagnosis - all very helpful! Feel have much more insight now re. possibly having more than 1 condition..... this is a great forum/platform 🙂
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