I’m looking for any thoughts as I’m not sure what to do next!
About 3 months ago my husband (60) started getting joint and muscle pain in his shoulders, wrists, hands, knees, hips, pelvis. It pretty much came on overnight. Meaning he had trouble getting dressed and sometimes getting out of bed etc. But usually by the afternoon or lunchtime, he is much better.
He went to the Doctor who thought it could be PMR or Lyme disease potentially, he had elevated inflammation markers and was put on 15 mg of Pred. Not sure the steroids worked as it hasn’t really improved.
Went to a private rheumatologist, and have just had all the results back. She can see no cause of the pain, all bloods and scans have come back ok. Says it’s not PMR due to not presenting the symptoms and that he is male and under 65.
She pretty much said that’s it - nothing more to say or do - when I asked what was the cause of the pain if the tests are all negative, she just said ‘it’s a mystery.’
She had told him to reduce his dose of Pred by 1mg every 2 weeks (he’s now at 12g)
I don’t really know where we go next! I’d thought paying to go private would help but although we’ve probably got info quicker we are just at “you have pain, no idea what it is & no idea what you should do about it”! Any thoughts about next steps would be really appreciated, thank you!
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Oh dear, it’s not nice being cast adrift like that, especially after paying for advice and getting no further forward. I fear the doctor you saw was not up to speed on PMR. The guidelines say anyone over 50 and just because he is male shouldn’t rule him out. Could you say how long he was on 15mg for? 4-6 weeks is needed to deal with the initial infection. It may not have been long enough. 15mg is really a starting dose and so not always effective in everyone. The upper recommended dose is 25mg. There is no actual test for PMR so any that are done are to rule other things out. However, inflammatory markers (ESR & CRP) are commonly raised but not in everyone and many a patient has been told it isn’t PMR because of this, only to be re diagnosed later. If he was on 15mg Pred, it may well have lowered his inflammatory markers because that’s what it does. Sometimes rheumatoid arthritis can present like PMR in the early days and it can also be negative of the RA test. The Rheumatologist should know this but they may have had other reasons to discount it.
thanks so much for your reply. He was on the 15mg dose for 3 weeks. And yes she did say that the steroids have lowered the inflammatory markers and that if he reduced the dose she could see how things really were. The consultant radiologist who carried out one of the scans did say maybe he needed a higher dose, which we mentioned to her & she said she had no idea why he’d say that & that she was the rheumatologist and he wasn’t.
Having said the steroids aren’t working he has actually started taking them earlier in the morning and this seems to have made the mornings a bit better
"Says it’s not PMR due to not presenting the symptoms and that he is male and under 65."
She wants to get out more! A third of patients are male, over 50 is the basis age but you can still get it before 50 - no-one told PMR it can't happen younger and we have several relatively young males. And exactly WHAT symptoms are missing according to her? What an appalling attitude - she has a patient with disability and rheumatological pain, it is her job to investigate properly.
15mg may not have been enough - if 15mg doesn't work, then 20 and even 25mg should be tried. The Recommendations say "lowest effective dose in the range 12,5 to 25mg" Exceptionally 30mg may be required. 15mg is towards the low end of the range - men have more muscle and tend to be bigger, they may need more.
When you go privately you can still get a poor doctor. Just you pay for the privilege of seeing them sooner. That's why we ask where people are and try to fit them with a doctor who is a bit better than average. Sometimes it is worth having a few days away to be able to see a really good one.
Fill in the blanks for me and we'll put our thinking caps on.
Come to think of it she didn’t actually say specifically what PMR symptoms weren’t showing, just that it was atypical along with the age and being male.
I guess if he’s weaning off the steroids and the pain gets worse maybe that will show they were working?
She seemed quite flabbergasted with the idea of a higher dose of steroids.
Yes you’re right, paying doesn’t necessarily mean getting the best outcome. We are in Hampshire & through the private health insurance my husband has he had a choice of 3 rheumatologists, we weren’t really sure how to research them to choose and did some ‘googling’ and they all sounded fine. In the end the other 2 were off for an extended period over Xmas & New Year and the lady we saw was the only one available before Xmas & as we didn’t have anything other to go on went with her.
Here are some guidelines that show the 65 age cut off is rubbish. Yes, males are a lower % but not low enough to rule it out. Lifetime risk for females is 2.4% and males 1.7%.
It took 30 mg for me, and have seen a few others where it took 30-ish..everyone is different. Don't give up..have them rule everything else out and then try a higher dose. I got my life back after 30mg for 6 weeks (yes, atypical, but someone has to be). STILL on 20, about to taper to 17.5 next week. I yo-yo'd a lot over the last 11 months, yet slowly but surely going down. Keep us posted!
It would be a shame to miss out - could you pay out of pocket for one session with Rod Hughes in Chertsey? He is our go-to hero - because he THINKS before saying something.
Perhaps there was a good reason why she was the only one available??!! Follow the excellent advice on this website, there are a lot of people here who know what they're talking about, unlike your rheumatologist.
I am in Hampshire too and I self funded and saw a different rheumatologist from you . I did have to wait a few weeks to see him because of Christmas and New Year, worth the wait though! He was very helpful. I was diagnosed by a GP in late Dec, and I was started on 15 mg of steroids daily. I am about to increase to 20 mg daily after emailing the consultant as I am not improving on 15mg. I have had a blood test today to check if my CPR level has changed from December and then another blood test a month hence. I am then going to pay for a follow up appointment as he says a differential diagnosis for my symptoms may be sero- negative arthritis linked to Crohns disease which I have had for many years.I hope you get the help and the answers you need and deserve very soon.
For what its worth, my rheumatologist here in the US started me on 20mg of prednisone last week. So far its helped a bit with symptoms, but hardly dramatic improvement.
Thanks for the response. I’d say I’m feeling about 20% better, maybe 25%. I have a follow up with my rheumatologist in 9 days snd Zi’m currently thinking he should have started me out at 25mg rather than 20. He may well want to also put me on Kevzara. Do you have any knowledge about that biologique?
Both my rheumatologist and my girlfriend (an MD but not a rheumatologist) are pretty sure I have PMR. Of all the various disease candidates out there that I have researched, PMR makes the most sense (I’m a lawyer with good research and reasoning skills and lots of opinions!😜).
My CRP and sed rate test results were quite elevated and all the other disease candidates either don’t fit my symptoms or don’t fit the many blood tests I have had in the last 4 months. I’ve been tested for everything from cancer to hypothyroidism to various forms of vasculitis.
Kevzara was just approved by FDA for PMR treatment on this side of the pond in Spring of ‘23 I think. Its the first biologique approved in US for PMR. It had previously been approved for rheumatoid arthritis.
I’ll send a note out as you suggest.
BTW, I got an error message when I clicked on the link you sent.
We know about Kevzara, it is an IL-6 inhibitor like Actemra which is used in some countries for PMR even though it is only approved for GCA. However, only the US is using Kevzara thus far and I think there are maybe one or two on the forum who may be using it. However, it is unlikely to be much different to Actemra and it isn't a 100% answer either.
Hi again DL—Just a quick note to say that you were right that my unsatisfactory response to 20mg of prednisone a day was indicative of me having something other than PMR. My doctors informed me on Thursday the 29th that my skin/fascia/muscle biopsy conclusively establishes that I have eosinophilic fasciitis not PMR. Some of the symptoms are similar but some are different and, unfortunately, very high doses of prednisone are required to treat it (up to 80mg a day for someone my size).
In any event, I wanted to let you know your intuition was right. Thank you for all the work you put in on this site.
Thanks for your reply… just had a quick look at EF - as you say similar in some ways to PMR, but hopefully can be controlled in a much shorter timeframe.
As for higher dose of Pred, they do sound scary, but I was on 80mg for 2 weeks and then 60mg for 8 weeks at beginning of my GCA [had already lost sight in one eye due to very late diagnosis and needed the 80mg to preserve other one] and it wasn’t as bad as you think. Although I won’t say it was a walk in the park… but then no powerful drug is.
My gosh what an attitude, ‘I haven’t a clue, so tough’. Had she thought of fibromyalgia? Even low vitamin D levels can cause that sort of pain. Did your husband have a blood test for Vitamin D? In fact there are several other things she could have considered, even rheumatoid arthritis. I am just gobsmacked.
Thanks for your reply. Yes she tested for vitamin D & B12 both were fine. Had nerve tests for carpal tunnel syndrome, chest & hand X-rays, wrist and hand ultrasound. None of which showed any particular issues. There was a very slight sign of ostio arthritis in one finger where he had an old cricket injury. Lots of blood taken and tested. Tested for rheumatoid arthritis which was negative too. The tests did feel pretty thorough, and seemed to rule everything out, but then that seemed to be that!
Having said ‘well what’s the cause of the pain then?’ has led her to book him in for an ultrasound scan on one of the shoulders and to take maximum paracetamol doses
We’re not sure at the moment, possibly yes. He thinks the steroids dent the pain and seem to work for 14-16 hours. When he’s taken them early in the morning at about 0600 & then he goes back to sleep when he wakes again he can get out of bed easily and do most things without too much pain although is still a bit stiff
If steroids are doing that it is a positive sign for PMR. But for some people the antiinflammatory effect lasts less than 24 hours. It is particularly obvious if the dose you are started at isn't high enough to clear out the accumulated inflammation entirely and that leaves a low threshold before the inflammation builds up to symptoms level again.
It wasn’t mentioned no. Yes she did make an effort with a lot tests and scans etc, but as they all either came back negative or she didn’t feel the symptoms etc indicated PMR (or anything else) she felt it ruled everything out, without any suggestions as to what he should do next, other than slowly taper off pred & take paracetamol, but the pain has to be coming from somewhere
Hi, the GP thought it was either Lyme disease or PMR. He had a test for Lyme which showed a possible past infection, & he had a 3 week course of antibiotics, but things were still the same after that. For the suspected PMR she put him on steroids which got rid of the pain for 3 days but then after that it came back and so after 3 weeks of being on the steroids without any real improvement she referred him to a rheumatologist
But the point of the tests and scans is really to rule out the other stuff - which she has done - and I don't understand why she rejects PMR. Many of us here would say it is pretty typical of PMR and HER rule-outs are false premises ...
For what it’s worth, I was started at 20mg, by a GP very familiar with pmr. The inflammatory markers came down quickly after three days, but I still had pain. She consequently put me up to thirty mg, and after three weeks, the inflammation was as good as cleared up, and I was able to taper down.
If it is pmr, then You will find you need lots of patience, and taper very slowly.
I appreciate you probably don't want to fork out more money, but if you say roughly where you live and how far willing to travel we may be able to suggest another "tried and tested" Rheumy who at least knows what they are talking about.
Which is more than can be said for the one your husband saw...
Hi, we are between Southampton & Winchester. Happy to travel along the coast to Bournemouth or Portsmouth or further north within Hampshire. A physio mentioned a Dr Edwards in Southampton. Of course it’s possible that my husband doesn’t have PMR, but something more than ‘done all the tests, don’t know what it is, goodbye’ would be good 😊
Might be worth raising a new posts with info you put in reply above asking for suggestions… then you can look them up before making a decision. There was a member who mentioned Southampton and Portsmouth recently. Obviously not a football fan or wouldn’t have mentioned both in same sentence….😳
I live quite near, in the north of the New Forest. I usually go to Salisbury, where I’ve seen one rheumy, who diagnosed fibromyalgia & OA, but not PMR. The second one was about 8 years ago, who just re-diagnosed fibro. The third one (who I was going to pay privately, but I got to top of NHS list) was a very bad experience, but was recommended by my GP, who was very sorry about the whole episode. He, also, spent a long time re-diagnosing fibromyalgia & also joint hypermobility (which I’ve had for a long long time). I’ve been on the waiting list to see a rheumy in Southampton for a year. Every 2 months they send me an email asking if I still want to see a consultant. This was for Ehlers Danlos Syndrome, not PMR. For 3 years of PMR I just worked with my GP, read this forum, & didn’t feel any need at all to see a consuktant. It was onky when my OA got worse that I was referred. If you find a good gp, who diagnoses, then prescribes, I’m not sure why there is a need?! In your case it looks like the Dr wants the diagnosis of a rheumy. Tbh, the two rheumies who diagnosed fibromyalgia just gave me an updated brochure & sent me in my way. Did the rheumy prod your husband in about a dozen or more places over the top half of his body? That’s the tests for fibro (along with symptoms). Painkillers rarely really help fibromyalgia. Steroids don’t help, I found. There are other drugs for fibro, like Gabapentin, if that’s what the final conclusion is. Sorry I don’t have a recommend in our area, but feel free to try Salisbury, you may have a completely different experience. Two out of 3 of mine weren’t bad, but weren’t about PMR.
Seems like the most logical thing to try, as the low dose of pred does help, is not to taper down unless there is a good reason to make diagnosis more definitive, but rather to increase. Some people simply need more pred than others.
It is also possible, unfortunately, for people to have both fibro, which is not helped by pred, and PMR which nearly always is if the dosage is right.
Lyme is not the only disease which can cause body aches and pains. This item from the Mayo Clinic suggests there can be a link in some cases to viral infection although there is no known specific virus. ( mayoclinic.org/diseases-con... )
Also, if someone is in the early stages of treatment for PMR it's really important to recognise that it is a fairly serious systemic condition and it's wise to take things easy for a while until the inflammation is properly under control and then one can start building up fitness level again. I hope your husband can get sensible treatment and feels better soon.
Good morning AVDB, I am sorry that your husband is suffering like this . I too have had PMR since April 2022 . When I went to my GP in July he started me on 20mg pred , he said if it worked in a few days then that would prove that it was PMR. It didn’t work for me so he stopped it . My inflammatory markers were very high . At the time I was looking after my terminally ill partner , so all this was going on whilst I was caring for him. I suffered until I was referred to a rheumatologist in the September who said emphatically that it was PMR and started me on 15mg pred, miraculously this time it worked and the pain started to ease after a couple of weeks. Perhaps if he was to try pred again , but to give it a bit longer to have an effect as he may find that it works this time . I do hope so 🤞🤞
I know what you and you're husband are going through. I was 53 when the exact same thing happened to me. It took 4 months for my GP to do a blood test. In the meantime I'd had all kinds of tests, scans and physio and I was just getting worse. However, within a week of starting on 25mg after the blood tests I could feel a huge improvement and within 14 months I was symptom free and had tapered off the steroids even with a minor flare up.
I thought that I was it. But unfortunately PMR had other plans. It came back when I was 56 and I've been on steroids since, I'm now 60. Tapered down to 2mg last year but it flared back up. I'm now on 6mg and living a full and active life and have accepted that steroids help me do this. There are downsides but at the moment I'm not rushing to get off them. The great advice on here has always helped me and is more often than not better than you get from 'experts'.
I do hope your husband gets things sorted and if it is PMR, based on my experience, then there is hope that he can return to a life that is not too different from a pre PMR life.
Why do so many medics put such blind faith in blood tests, assuming they are always accurate? They are not, everyone makes mistakes, including Lab Technicians. The symptoms you describe are exactly the same as those I had. 15mg of Pred did not even touch the sides and had to go to 25mg before the blessed relief came. Blow the medics you have seen and go to 20mg for a few days and if pain is subsiding stay there for a while and then start reducing but by no more than 10%. If the pain is no better at 20mg go to 25 for a few days.
I think it is because they are tangible and many ARE fixed within a range and they are deranged when something is wrong and that gives them a sense of security, I worked in labs originally and what WE were taught about labs wasn't the same as medics learned until they came to work in the lab. In those days the medical staff in the lab would interpret the results if they were confusing - not sure that still happens. And the ESR/CRP aren't always raised - that is known - but many doctors either don't know or don't believe it.
It took 30mg to start with with me and the symptoms disappeared very quickly almost overnight. If it was me I'd try a much higher dose to see if it mops up the inflammation, and if the pain doesn't go away then that could rule out PMR. (Bearing in mind no painkillers will help, only steroids for this condition) I am now down to 2mg taking a very slow reduction over time.
I noticed that your husband went to see the Rheumatologist via your his private medical insurance. If I was in his situation I would be calling my insurers and explaining that you need a proper second opinion from a PMR specialist. Telling them how you've been fobbed off. I would ask to be referred to Dr Hughes at Chertsey for that second opinion and make a short break out of it. I was 46 when first diagnosed well under the so called "normal"age! My rheumy goes on symptoms not blood tests but he's in Essex. Hope you get some answers soon x
His type of insurance only pays for 3 visits to a consultant each year & he’ll be having his 3rd to the rheumy in about 6 weeks time, after that any visits have to be paid for himself. He would consider paying, but not for someone who just says I don’t know what it is keep reducing your dose of pred because you don’t have PMR, I mean if that’s all we’re paying for I can say those things at home to him for free!
We would certainly consider going to Chertsey for a 2nd opinion as we used to live in that area, and it’s not that far.
I think we’ll have to try to use this final (?) visit to the rheumy in a few weeks time well, although not sure what to ask!
If you are going to have to pay in future then I think I'd spend it on a trip to Chertsey - you will certainly get a sensible opinion from Rod and he will discuss it with you as intelligent adults!
Is there any sense in keeping that 3rd visit for another possible event or is it 3 visits for each event and the clocl resets?
It’s 3 visits per year, not each event sadly. The rheumatologist has arranged for a shoulder ultrasound between now and the next appointment, I think in an attempt to prove it’s osteoarthritis. But I don’t think osteoarthritis presents itself overnight in both sides of jaw, shoulders, wrists, hands & hips.
I hadn’t mentioned it in my posts, but his mother had scleroderma which is an immune disease so perhaps he has a family propensity to that kind of thing, plus a week or so before the pains started I had norovirus which he seemed to avoid catching & at the initial appointment she did think perhaps his immune system had gone into overdrive fighting the virus and it had kicked off the pain & stiffness, but after the test results everything seemed to be discounted. She was shoo-ing us out of the door basically & I had to say “well he’s still in pain so what’s causing it”
I would certainly tell the insurance company about such an experience. No doctor I was paying for, even if through insurance, would shoo ME out the door without a sensible opinion first.
With a bit of luck, the ultrasound will show bursitis not OA and she will have to eat her words - and have learnt something. Not that I am wishing PMR on your husband!
"US and MRI were equally effective in confirming bilateral subacromial and subdeltoid bursitis in PMR. This finding, in view of its high sensitivity and specificity, could be used as a new diagnostic criterion for PMR."
It would still be worth your husband speaking to his insurers as they might allow a second opinion especially as a Rheumatologist on their books has delivered a less than satisfactory experience. It's worth an ask in my opinion.
Did the inflammatory markers reduce in line with the dose of prednisolone? If not, and the inflammation is still there, why should the symptoms improve? Some autoimmune diseases need much more than 15mg to get a good response.
If the inflammation did come down, but the symptoms stayed the same, it's unlikely to be an autoimmune disease. Are any of his actual joints swollen? Arthritis is disease of the joints; PMR is a disease of the muscles; vasculitis (eg. GCA) is a disease of the blood vessels; myasthenia gravis is a disease of the nerve-muscle connections. All of them are autoimmune and should respond to prednisolone, if the dose is high enough. Is the pain in the actual joints or the muscles that surround each joint to keep it stable?
When the doctor first put him on the 15mg of pred 1 of the inflammatory markers came down from 47 to 18 after a couple of weeks. For the 1st 4 days his symptoms went away completely but then they came back again.
The doctor referred him to the rheumatologist as the symptoms hadn’t improved and the doctor wasn’t sure if the inflammation markers were those you’d expect to see for PMR.
After the latest visit to the rheumatologist and tapering down to 12mg she said there is now no inflammation although the steroids are potentially masking it. But he still has the pain.
They carried out tests and scans for all those things and none of his joints are swollen and the tests were negative for everything she could test for. It’s difficult to say exactly if it’s muscle or joint pain, quite possibly just muscular.
I was diagnosed with PMR by a Doctor in April 22. I had most of the symptoms your husband had. I was tested positive for Lyme by a Rheumatologist Sept. 22 and weaned off steroids.
I still have symptoms at present and blood markers are normal and Lyme now negative. Like your husband I'm a mystery! He ain't alone.
I guess I better go tell my board certified rheumatologist that he misdiagnosed me with PMR last week because I’m 60 and male. In other words, I suggest your husband get a new rheumatologist as the one who said he can’t have it because he is under 65 and male seems misinformed.
Hi, I can completely relate to your husband's story. That's exactly what happened to me except I'm a 48 yr old female. The Dr has told me on more than 1 occasion that "I'm a mystery". It's been 2 yrs, endless bloods, ct scan, ultrasounds, x rays, tried pregabelin, prednisone etc. Was told pmr, then fibromyalgia and still ongoing. I have no advice but just expressing you guys empathy. Hang in there, keep pestering Dr as your husband knows his body the best.
Because my Dr initially thought pmr, then rheumatologist diagnosed fibromyalgia and he went with that. I have bursitis too. My wbc and crp been up last 2 years and he can't figure out why. Now my knees are swollen, got x rays today.
If pred worked - NOT fibro. Raised CRP - NOT fibro, Bursitis is also common in PMR.
You need to find a second opinion from a rheumy who knows the difference. It may mean a private one if you can afford it but don't go to just anyone. Where are you?
Coming back to my original post with an update…my husband has been tapering off of pred and is now at 9mg, fortunately things appear to be slowly improving, or at least mostly not getting worse on the reduced pred. He’s a bit achy in the mornings & sometimes needs help putting certain clothes on or shoes, but generally things are reasonable and he’s living a normal life, which is a big improvement from where he was
He had 2 more scans in both shoulders looking for osteoarthritis (which is what the rheumatologist had said must have appeared everywhere overnight in multiple parts of his body to cause his pain!) and there is no evidence of any.
He’s going back to the rheumatologist in about a weeks time (yes the one who said impossible that it’s PMR as you are a man aged 60!) and will see what she says.
As things seem to be slowly improving over time he’s not so stressed about it which is good. I think he is happy to continue tapering off the pred and then there’s probably no need to see the rheumy (especially as he has to pay after the 3rd visit) and I think if it does flare up again we’ll definitely consider some of the recommended rheumys mentioned.
Thanks for everyone’s comments, they’ve been really helpful x
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