Hi, advice please! I had a PMR diagnosis so put on prednisone then rheumatologist diagnosis of not PMR but fibromyalgia so tapered off prednisone. Finished prednisone in Sept. Pains returned referred to physio which worsened Pains so was discharged. Got a appt with Dr finally but had a 6 week wait. That appt was a week ago. Turned up to appt and waited for an hour as Dr way behind. Finally left as was very frustrated and it was by now 4.50pm (clinic shuts at 5pm). I had kids to pick up at 5pm. I messaged my Dr a somewhat blunt email that night. He was very apologetic and recommended that I go on amitriptyline, melatonin, Vit D, folic acid, and B12. (This was because of a lecture he'd attended about fibromyalgia). I picked up the scripts but the next day developed a cough so didn't start the medication. After the cough got worse aggravating my asthma I got a virtual Dr appt from a random Dr who said to go back on prednisone for 25 mg for 5 days to help with cough. About 4 hours after taking 25 mg my pains had decreased to I'd say 4/10. (Prior 8/10). So now, I'm completely confused...prednisone doesn't help with fibromyalgia Pains as I understand? I also suffer from bursitis so it could be that Pains have decreased because of prednisone reducing inflammation in bursae. It's so frustrating and a never ending circle.
Fibromyalgia or PMR: Hi, advice please! I had a... - PMRGCAuk
Fibromyalgia or PMR
You are right steroids have no effect on fibro and steroids are the only thing that really works on PMR. So it should be quite easy to knock one of them out.
I have so much sympathy for you! I would be tearing my hair out but, of course, this would solve nothing. Please read the following which may be helpful:
verywellhealth.com/fibromya....
Hi, thank you, good information there. The Dr originally thought I had PMR but after referring me to a rheumatologist (who then disagreed and said it was fibromyalgia), the Dr went with his diagnosis of fibromyalgia. I've had numerous blood tests and I have according to Dr no real PMR markers.
I'd say that at the very least you have BOTH, which is perfectly possible. But I suspect you have PMR - whatever the rheumy thinks. Keep looking for a sensible doctor.
Thanks, I'm at a loss what to do. I could stay on prednisone as I have heaps of it here at home but I'm not keen. I'm not keen either to go on amitriptyline etc either as I really don't think they'd do anything. The fact that prednisone has helped though to my mind at least shows it's doing something even with the bursitis issues. I have no obvious markers for PMR in latest bloods either.
That doesn't mean a lot - my markers were never outside the normal range, That is found in about 1 in 5 patients - but it doesn't mean they aren't raised for them. The range is what might be found in a large population of people, not one single person.
Please can you provide a link for the "1 in 5" figure. I've only recently started seeing that quoted. Previously, I've read a few percent.
See first paragraph in this -
ncbi.nlm.nih.gov/pmc/articl...
Thank you. That's an excellent article from a very good source. However, it does does not say that "20%" or "up to 20%" of PMR patients have normal blood tests. It says, "In a sizable proportion of PMR patients – from 7% to 22% – ESR is not raised at the time of diagnosis. However, in these patients, CRP is usually raised." That means that it's very common for ESR to be normal, but the C-reactive protein test will "usually" be positive instead.
That said, it is a very useful paper because it goes on to say that, "The normal values of both of these biomarkers at the time of diagnosis were rarely reported." It quotes three studies showing 1.2%, 0.6% (1 in 177) and 2.3% (6 in 265). So it would be better to say "up to 2.3% (or 1 in 44) PMR patients have both normal CRP and normal ESR."
The paper also says, "Some speculated that PMR might be an incomplete form of giant cell arteritis (GCA), manifested in the regions in the proximity of axillary, subclavian, and/or femoral arteritis. A biopsy-proven GCA can be present without elevation of ESR and CRP [6], and in the literature GCA with normal ESR and CRP at diagnosis is much more frequent than PMR with normal values of inflammatory markers. Accordingly, it might be hypothesised that PMR patients with normal values of both ESR and CRP have an occult GCA."
Yes I know what it says, I read it before I linked it…😊
Depends on the publication your read - up to 1 in 5 I should have said but I really do think the 1 in 5 is closer to reality.
If the rate was as high as 1 in 5, I'd expect all experienced GPs and rheumatologists to be familiar with such cases.
Why? Many of those patients never get to a rheumy and any given GP probably sees quite a small number of patients in their career - so an even smaller number of low marker patients. I am also quite a sure that there are a lot of undiagnosed PMR patients wandering around with labels that say "fibromyalgia", "somatism" and other such things. To get those figures, they have to do a lot of patients and analyse the data. And they don't.
The fact that some doctors are prepared to diagnose patients as having PMR despite their blood tests being normal, while others refuse to (even when they respond to steroids), is a valid but different point. It is very possible "up to 20%" of PMR cases are undiagnosed or misdiagnosed, but I've yet to see a study conclude that. The above study finds that up to 2.3% of diagnosed PMR patients have normal bloods. It follows that the study can only have included data from doctors prepared to diagnose.
There is a study that quotes figures for misdiagnoses. I think it may be this one, based on a single hospital in Italy with a leading group of specialists in PMR/GCA:
ncbi.nlm.nih.gov/pmc/articl...
This is not a particularly good paper in terms of its English but it does illustrate the complexities of diagnosis
ncbi.nlm.nih.gov/pmc/articl...
and I believe PMR has been inderestimated as a disease and dismissed as benign when it most certainly is not. Some specialists are beginning to understand that but are being dismissed by traditionalists who regard it to be a one-size-fits-all disorder and it is the patients being uncooperative that results in flares and persistent symptoms.
The first paper only looks at misdiagnosis and under-diagnosis by Italian GPs; it effectively assumes that the assessing rheumatologists' judgement was perfect. They confirmed 41 cases of PMR diagnosed by GPs, overturned 93 in favour of other diseases, and found 169 cases of PMR the GPs had missed. It found most of the problem was caused by a lack of specific training.
The second paper is from India, where PMR is much rarer than it is in northern Europe. Therefore, rather than offer new or local insight, it summarises the many studies that it references from around the world. As we'd expect, these many studies sometimes contradict each other to some degree. They also sometimes throw up a fringe conclusion that does not emerge by consensus.
Far be it from me to be picky - but being published in an Indian journal doesn't actually mean the authors are Indian nor that the work was done in India. The authors are from Poland - and I imagine the article was welcomed in India since many Indian doctors end up working in the UK where PMR is common.
All your points are valid. My point was that the paper summarises a large number of studies from parts of the world where PMR is more common. Rather than attempt a consensus on diagnosis, it reveals an enormous spread of observations, some of them contradictory.
Nobody wants to be on pred but it’s the only thing that works for PMR.
They tried to palm me off with Fibromyalgia too and this seems to be the default diagnosis when all else fails due the myriad of symptoms. They really do not like PMR diagnosis if you have normal blood work either. Response to steroids suggests it is not Fibromyalgia but suffers have tender points and the pain sounds different too - more nerve like than muscular. I was given a score sheet of symptoms which covered most parts of the body but even at my worst I did not qualify. Vitamin D and folic acid did nothing for me either with only relief from steroids
Thank you, you're right, fibromyalgia as even my Dr said was the "default". He's at a loss what to do. He attended a lecture about fibromyalgia where the specialist put fibromyalgia patients on and anti-depressant, folic acid, B12, melatonin and Vit D and supposedly it's meant to help and has shown good results. I have all over body pains pretty much everywhere and constantly. I have been under huge stress the last 2 yrs so that's probably a likely cause/factor. I'm only 48 so rheumatologist is adamant I'm too young gor PMR. I hope things improve for you.
Indeed, you are a young person! But you don't have to be 50 or older to have PMR. You mention the prednisone helped your bursitis. Did it help pain anywhere else in your body? I hope you get answers soon.
Thanks Monkey321 - keep educating yourself and challenge these doctors. I’ve seen three rheumatologists now - no. 1 made the diagnosis, no .2 said it can’t be PMR but later changed mind and no.3 was adamant it could not be PMR too. I went back to no. 1 who said it’s possible to have symptoms at 47 with normal blood markers and the people n this forum certainly fit this category. Steroids do help with many other conditions however so it is tricky
Thank you, it's a very frustrating time, it sounds like you've been through similar things. Very annoying when you have to chase up rheumatologists whose opinions all differ
I was told as a v recent acquirer of PMR that rapid response to pred was diagnostic ( we were querying a couple of possibilities and my response to pred in 6 hours nailed it).
That's good you got a clear result, ie, that the prednisone helped so likely to be PMR.
No a bit firmer than that , as good as certain.
Not entirely true I'm afraid - if only it were! But it is a very solid brick in the wall of evidence.
Thanks you for that. Teach me to take the professionals at their word!☺️
There is actually a post today from someone who had a very good response to pred - but now it turns out from x-rays and other tests he has RA! It is supporting evidence - no more. RA can present looking exactly like PMR and even experts get it wrong - it isn't their fault but it is a good policy to keep an open mind.
I am sorry that you have had all this uncertainty about your diagnosis and I can full well understand the despair that goes with that, when all you want is to be made well again. Like you, I was in the younger age range i.e. in my 40s, when I first had symptoms of PMR, and I really do believe that I have had it on and off, flaring and remitting, all that time, undiagnosed and untreated. I've read the whole thread and picked up on some of the comments on medications offered.
My inflammatory markers have never been raised so the blood results are not the clincher, it is the symptoms, but I'm damned sure that I have PMR (and I have had to endure the same umming and ahhing from different doctors about my diagnosis). As has been pointed out, some PMR patients don't show raised ESR or CRP. Anyway, whatever they want to call it, whatever I have is extremely responsive to pred and that would not be the case with fibromyalgia.
Fibromyalgia is neurological and PMR is autoimmune and therefore inflammatory. It seems like the confusion happens most in patients who might have both. Possibly you fall into that category.
I wouldn't get too hung up on the fact that amitriptyline happens to be an anti depressant. I doubt that they are dismissing your symptoms as depression, if that is your concern, especially as tricyclics (of which amitriptyline is one) are not so often used as a first line treatment for depression nowadays. But it does have an awful lot of uses for all kinds of conditions, from IBS to a whole range of neurological conditions and can be very effective in some patients. Ultimately, it is your choice whether you want to give it a go, but if it does turn out that you do have both PMR and fibromyalgia, I would expect that either pred or amitriptyline alone are not going to give you complete relief of all your pain.
Personally, I would give the Vitamin D at the very least a go, whatever your final diagnosis turns out to be and whatever other meds you are on. If you live in Britain, you should arguably be taking it in the winter anyway, even without PMR. It won't give you any immediate relief from the pain, but it does have some inflammatory action and I have seen some studies that have shown that after 6 months use, it has helped patients to reduce their pred. The rheumatologist that I initially spoke to was adamant that whatever else I took, I should definitely be on Vitamin D. A lot of patients with PMR have been shown to be low on Vitamin D and since most PMR patients tend to be in the older age range, they are more likely to be deficient anyway. On a personal note, I have found that taking Vit D, folic acid, B6 and B12 (i.e. the vits involved in the metabolic energy pathways) seem to have helped me manage the awful fatigue that I have experienced with PMR, but it took a few weeks before I started to feel better.
Hope you get some answers soon.
Thank you. I'm in NZ and summer just started here. I have to take 1 Vit D once a month so will continue to take that. Vit B12 is out of stock in NZ till February so will get it then. Always good to hear from people like yourself with real experience (not a remote Dr or rheumatologist). I was on pregabelin in 2021 and reacted to it badly and although it's different to amitriptyline, I'm not that keen again to take anti-depressants.
I can understand that caution about switching to new meds. My friend has a neurological condition and she did not get alone with pregabalin either. I experience problems every time they try to change my asthma meds, even though I am fine on the original ones. And I had problems with amitriptyline when given it for my IBS. I didn't take it long enough to find out if I was OK on it as I developed an allergy almost immediately and broke out in a rash all over my body and my asthma got really bad, so I had to come off it directly. The challenge for prescribers is that they don't know if an individual patient will suffer side effects or an allergy until they try it.
I have fibromyalgia, PMR & bursitis. All I can tell you is what helps me!! For fibro pred does nothing (had fibro 12 years before PMR joined in). But amitryptylline at night relaxed muscles & helped me get off to sleep. Not a good nights sleep, but some us better than none. There are drugs to help fibro like Gabapentin & Pregabalin. Sadly, I was unable to take either, the side effects were too great. I was on folic acid for 6 months this year, but only because blood test showed I was very low. Now stopped. Bursitis, the only thing that has helped us steroid injections, I’ve had two now. First one lasted 4 months, second one two weeks, but I had a bad fall which messed it up again. My blood tests show I don’t need B12 or B6. I was prescribed calcium & Vit D when PMR started, been taking them for 4 years. I tried melatonin, bought some while in USA, but no help at all. This year I was re-examined & tested (by pressing pressure points on the body) for fibromyalgia. In my case, all pressure points tested positive, so I still have it. Fibro should not be a default. Consultants can test the pressure points to diagnose. Keep pushing to find out what’s going on!!
I basically diagnosed myself. I developed PMR during covid, after my second jab. Our GP surgery was virtually closed - the lead GP died of covid and another was pregnant. Phone appointments only, with a month wait. A locum told me to get a massage.
Much research and a month or two later, it was a toss up between PMR and fibro. I diagnosed myself with PMR simply because my research said fibro pain is constant, PMR pain is only when you move. This was true for me. As long as I stayed still I was fine. Moving was both difficult and painful though. However I do have tender points, but they're not used in diagnosis any more.
Anyway I at last got a GP who listened, but I had to request the blood tests for ESR, CRP, RA factor etc or I wouldn't have got anywhere! By the time I went on 15mg pred (effective within 12 hours) I had also developed GCA.
So don't let them mess you about, stick to your guns!!
Same with me - if I could keep still the pain would subside and was definately worse in the morning too. I’m not sure Fibromyalgia sufferes get any respite - their pain sounds more chronic
Yes, a friend has it. She had to go away on a 3 week pain management course. We're lucky in some respects, at least pred works to alleviate the symptoms!
Totally agree and I also live in hope that PMR won’t progressivly get worse and eventually die down
Fingers crossed!
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