Polymyalgia is it or isn't it

18months ago I was diagnosed by my doctor as having polymyalgia. I had been having lots of stiffness and pain in my left shoulder and neck and some in my right. I had had problems before with my neck and right shoulder which was due to osteoarthritis and I had managed this with anti inflamatories for many years When the pain in my left shoulder persisted I eventually went to see the doctor. After an xray and blood tests she diagnosed the polymyalgia and put me on a high dose of 40mgs steroids. She said that if it was polymyalgia then the steroids would have a marked effect within the week

They did and the pain was significantly reduced within that week the doctor advised me to keep at that dose for several weeks than gradually reduce the amount of tablets , and if my symptons returned to go back up to the previous dose. This I did over the next few months but during that time I had a bad fall onto my left shoulder, and my right shoulder was playing up more at that time also. I ended up being unable to move my left arm hardly at all and was very limited with my right. An -ray showed no dislocation I was put on more anti inflamatories and given physio. This went on for several months and no one could tell me if the pain in my shoulders and arms was as a result of arthritis and fall or the polymyalgia or both as I again had the pain in shoulders and down arms and couldn't lift my arm very much. After 6mths of physio the physiotherapist said I had a frozen right shoulder and if it got worse to go back to the doctor. At this stage I could just about lift both arms above my head d with a small weight from both the front and side . a big improvement on how it had been. I had continued to reduce my steroid tablets and was down to 20mg /15mgs. when I took only the 15 mgs I started to get the pains back again. On seeing my doctor she said things had been going on long enough and as I didn't seem able to reduce the steroids any more she would refer me to a Rheaumatologist , and also took more bloods.By the time I got to see the consultant 4months later I had managed to get the medication down

to 5mgs a day but was not symptomless I had just learnt to live with it. All this time I had continued to take my regular anti inflamatory tablets and had also had a steroid injection in my left shoulder as another doctor has said the pain was due to the arthritis inflammation in the shoulder joint.

The consultant reviewed my bloodtests and sent me for x rays of my hands and a MRI scan on my shoulder .She said that the steroids would reduce the symptons of various problems and that she didn`t feel that it was polymyalgia I had

She advise continuing with reducing the steroids. I went back 3 weeks later she hadn`t yet got the results of the MIR but she sai d it wasn't polymyalgia or reaumatoid arthritis . At this stage I had had a trip at work jarring my left shoulder again and I had a lot of pain in both shoulders arms and hands. When I asked what was causing all the pain she said it was the arthritis and advised me to discontinue the steroids.but to increase the anti inflamotories

By this time I had been of work several weeks and when I went to the doctor for another sick note they said not to take so many anti inflamotories, so I cut them down and I am now taking no steroids and my usual dose of anti inflamatories and painkillers 2-3 times a day

my next visit to the consultant she said the MRI showed that I could have a tear in the tendons in my shoulder and she would refer me to the orthopaedic consultant.

I go to see him next week I am still having pain in both shoulders and my neck , my fingers are painfull and I get pins and needles in my hands when doing anything. I can just about lift both arms up but with no weights and only for about 10-15 lifts front and side before its too painful My neck is stiff and I have lots of headaches and feel tired most of the time.when I have my left arm bent say carrying something or holding a book it starts to hurt from my neck and collarbone right down my arm to my hand . This will go away if I stop what I am doing and just let my arm hang or put it out straight, bit this sometimes takes a while and even the painkillers don't dull it

to sum up and sorry its such an epistle but I would like to know if any of these symptoms are similar or the same as others out there with polymyalgia I feel that is what most of this is and I am tempted to restart the steroids say on 20mg just to see if that relieves the symptoms I am having. My last blood test show a small rise in the markers they look for that indicate PMR abut I had not long stopped the steroids when it was taken. I am due to have another in a couple of weeks to see whats happening . maybe that will shed some light, maybe No seems to be giving me any clear answers and its getting me down I am still off work but cant afford to stay off so I need to know the future prospects are

I would be grateful for any feedback and if anyone else has had similar diagnosis problems

10 Replies

  • What you describe is just like the symptoms I had for 5 years that no-one could identify - 6 hours after taking 15mg of pred they were markedly better!

    Confusing frozen shoulder and PMR is quite common and it may be the first signs of PMR. Have you ever tried Bowen therapy? One of the things they say it is particularly good for is frozen shoulder - and it also helps with a few other things that often are found along with PMR and in my book, if it helps some of the pain that is a definite positive. No side effects (except a mild one on your wallet) and very relaxing. If it will help then it will be seen to do so in the first 3 sessions - if nothing has changed it probably isn't worth persisting. However - it may also help your headaches if they are due to tight muscles which they were in my case.

    Starting you at 40mg for query PMR is silly - lots of things would respond to that high a dose so it can mask what is going on and it is mostly totally unnecessary for PMR. The latest recommendations are to start on 15-25 mg and then reduce slowly- depending on the patient, not a fixed idea.

    Ordinary pain killers do little for PMR and the pain you describe when holding a book/carrying something is very typical of something called claudication: the blood supply to the muscles is not good enough for them to cope with repeated activity (as in lifting weights) or sustaining a position (holding something). I couldn't even hold a mobile phone to my ear without it happening! That is a sign of GCA/PMR. Once I was on 15mg of pred it was much much better.

    If your blood markers were rising soon after stopping pred then that is suspicious - get them done again. You could try a moderate dose of pred, 15-20mg and see what happens as evidence.

    I really struggle with the concept it is too risky to put a patient on pred that works - but perfectly fine to tell them to take NSAIDs which have some horrible side effects too but don't really work for the pain...

  • Hi katking,

    Oh lordy, do they sound familiar - oh yes!

    A quick run down: bilateral aches in upper arms, followed by shoulders (significantly worse in left - now know OA), general fatigue, although no weight loss or hot sweats etc. Extreme difficulty in sleeping due to pains in shoulders, couldn't turn over in night, couldn't lift arms above shoulder height at all. Frozen shoulder diagnosed, and treated for 18 months with physio and 3 steroid injections. Nothing worked, took so many painkillers day and night I kept a diary to ensure I didn't overdose! Finally after a few months of excruciating head problems (supposedly from my frozen shoulder/trapped nerve), lost sight in right eye and GCA diagnosed in A&E!

    Right now on to you, if it is PMR the only thing that will alleviate pain is Pred, as you found out initially, although for PMR 40mg is a very high start point, not steroid injections, not anti-inflammatories [which shouldn't be taken alongside Pred - can cause stomach problems] and nor any painkillers.

    I find arthritis pain is different from GCA pain, its more targeted than general in the shoulder - does that make sense? Can't really explain it any other way, sorry.

    If you try 20mg of Pred, you should know within a week whether its working or not, maybe only a few days, but don't use anti-inflammatories as well. Trouble is, the Pred will also mask other pains (like it did at 40mg) And of course, all your other problems i.e torn tendons etc will exacerbate the inflammation! It's a bit of a vicious circle all told.

    As your GP diagnosed PMR in the first place, she obviously had good reason to - and I think that's what you have, but unfortunately all the other things have come along and muddied the water. Don't think you've been helped by the number of consultants you have seen, they all seem to be looking for something different.

    I would be inclined to speak to GP, stating you are totally confused by the conflicting messages you are getting - and say you want to give the Pred a try at the higher dose and see what happens.

    I sincerely hope you get it sorted, and quickly, you've gone through enough already.

  • katking, apart from the falls you seem to have been experiencing conflicting advice so it isn't at all surprising that you are still looking for answers after all this time.

    I would go with your gut instinct and re-start the steroids at either 15 or 20mg and see whether you feel any better, at least by about 75%.

    At the same time, you should try and ditch the anti-inflammatories and the painkillers - if it is PMR, then anti-inflammatories and painkillers are unlikely to reduce the inflammation that is giving rise to the symptoms. Plus long-term use of anti-inflammatories carries serious risks including the risk of kidney damage - I learnt this the hard way when I, too, took anti-inflammatories in the vain hope of dulling my pain due to the failure of anyone to diagnose PMR.

    Also, if this is PMR, the 10-15 arm lifts you are doing, either with or without weights, will only serve to aggravate the inflammation at this stage as your muscles will be intolerant of exercise and will take longer to recover.

    If the main problem does turn out to be a tear or injury to the tendons in your left shoulder (and long-term, high dose steroids can lead to this), which is having a knock-on effect leading to other painful areas, then you will need referral to a physiotherapist for specific exercises to solve this problem.

    Pity you were started on as high a dose as 40mg for 'just' PMR, unless of course the GP suspected the linked condition, GCA. Such high doses are generally reserved for those with GCA. A 40mg starting dose when not needed only serves to put you at risk of unnecessary side effects.

    Is there another rheumatologist to whom you could be referred for a second opinion? Depending in which part of the country you live, we might be able to recommend someone.

  • Funny this should come up on my mail this morning .

    Have been thinking to tell my doctor that I want to reduce steroids . You are almost a mirror image to me .

    Diagnosed November 2014 put on 40 mg steroid . Got down to 9 mg 3 months .

    Levels CRP ? Have stayed since then around 30 .

    Early 20s knocked down by drunk suffered severe concision . Middle 20s diagnosed with neuralgia . Have never really been without head neck shoulder pain Always put it down to accident and work . Was a draughtswoman . Recent years pain more intense and was relieved when the doctor said after blood tests it was PMR .When I started steroids 15 mg the pain was much relieved but didn't go completely . Since falling and twisting my neck to avoid hurting my self last summer , I ended up in hospital a few days later with severe head pain .

    Saw neurological specialist who told me that all the other specialists I had seen were wrong and that I had Multi migraines . Through this last lot of cold weather I do know the difference . And some of this is definitely Neauralgia . I also have osteoarthritis in neck and shoulders etc . I am 67 . Because there is no improvement I believe I haven't got PMR . Don't like what the steroid are doing to me . Thining hair , have now recently been diagnosed with glucoma thought to be related to taking steroids . I am very much a crafts person , painting sewing , willow work etc . What to do ?

    I want to reduce steroids again regardless of next blood test result on Tuesday and see what happens . Headache is permantly there except at night when laying flat . Also other pains mentioned depend on what I have been doing regarding craft . Twice in last 6 weeks have had quite severe falls while walking in mud with our dog . Always land on bad shoulder .

    So I am hoping my doctor will support me in going back to basics . I know coming of steroids takes a long time but feel that it will prove PMR one way or the other .

    I wish you well on this journey of discovery 🌷🌷

  • If you just want to reduce the pred to get off it altogether it isn't half as longwinded as reducing to identify the right dose for PMR. The slow reductions we recommend on the forums are to reduce the chances of return of pain due to the reduction being too big leading to missing the right dose or suffering from steroid withdrawal rheumatism which is easy to confuse with a flare. If all you want to do is get off pred you can reduce to somewhere in the region of just under 10mg very quickly - it may be unpleasant but if you aren't wanting to use the pred for PMR you haven't got the confusion problem.

    Getting below 7mg is another matter and everyone will be different of course but another approach is to switch you to hydrocortisone which is felt by endocrinologists to be better than using pred in the discontinuing steroids game and persuading the adrenal glands to work properly again. You can have a synacthen stimulation test once you are at somewhere IRO 5-7mg and that will tell you whether your adrenal glands are CAPABLE of producing cortisol, the natural steroid. You don't have to stop taking pred before this can be done, just for the 24 hours before the test (i.e. since the morning dose the day before) which is done at 9am and once it is finished you can take today's dose as usual, just a bit late.

  • You bet they are polymyalgia symptoms. Sadly once one has it it comes & goes & no two people aren't the same. Lack of it showing up in blood tests does not necessarily mean you are free of it. The only test I know is to up the steroids to say 20 mg per day & see if the bad pain suddenly goes away.

    High doses of steroid have lots of side effects which again are specific to the individual. We usually end up knowing what dose suits us best & deciding our own steroid level.

    Of course one gets other injuries which compound the pain so it is not an either or but a both cause & the pain has to be relieved by appropriate additional painkillers.

    Do hope you get some relief!

  • Hello Katking

    You must be feeling pretty frustrated, and adding that to a load of pain is a horrible situation. However, please don't start medicating yourself again with steroids. You have already taken quite a lot of them over a fairly lengthy period and it sounds as though you haven't had the most consistent treatment from your doctors. Steroids are powerful drugs that build up cumulative effects in your body. They are not a short term fix. In your position I would trust the rheumatologist. And don't mess about with your medication without talking to your doctor first, whatever people on this thread might advise!

  • Sorry, Kate, if I am one of the "people" you have referred to in your post. Katking asked for feedback from anyone who had experienced problems in diagnosis, and I replied with the best intentions of offering support following my own experience with a very rough path to diagnosis, and especially the damage caused to me by long-term anti-inflammatories - far worse than any subsequent side effects experienced from steroids. Katking mentioned she was tempted to re-start the steroids at a lower dose and following my experience I simply agreed with her to follow her gut instinct. I apologise if you feel I have overstepped the mark in my reply to her. Those of us who continue to reply daily in support of others on this forum do so with the very best intentions of helping from our vast experience - hopefully we get it right more than we get it wrong!

  • Hiya, I'm not wanting anybody to apologise! It's just that I have to remind the forum from time to time. If I didn't I wouldn't be fulfilling my role as administrator properly. It's just something I have to do to keep us all covered.

  • Hi thanks for all the replies It helps to know others are having the same kind of difficulties. I didn't like being on the steroids so I am very reluctant to start them again which I wouldn't without medical advice, Things may be clearer after I have seen the bone doc, but if not then I will probably ask my own GP about another blood test and restarting steroids to see what happens

    keep you all posted

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