I am enquiring if anyone here on this site has been or was diagnosed with PMR under the age of 50 or knows of people who have been?
All the research I have done online seems to insist that you can only get it if you are aged 50 or over. Although, I found a medical report that said 2 women in their mid 40’s in the USA presented with PMR but this was rare…
I am 43 -almost 44 and I have had some unusual and horrible symptoms over the past 3 weeks. They do seem to point to PMR but apparently I am too young?
I am having investigations for the symptoms through my GP and my hospital but they don’t seem to be getting to the bottom of what is going on.
Symptoms are:
Sudden onset Fever/high temperature got worse at night.
Neck and shoulder aches which are severe along with a headache which is mostly located to the back and side of my head. The neck ache and shoulder ache is worse in the early hours of the morning and again when I wake up in the morning and my neck and shoulders are stiff. It eases up as the day goes on but doesn’t completely go away.
Last night I had awful night sweats around my head and neck. My pillow was soaked on the side I was sleeping.
Blood tests this week showed high CRP and ESR which led my doctor to send me to A&E.
While at the hospital yesterday one of the inflammatory markers went down but one remained high. I do not know which one.
Rheumatoid arthritis is prevalent in my family. I have 4 family members who suffer with it. My sister being one of them and her symptoms started when she was 44.
Any advice would be greatly appreciated. I am returning to hospital on Monday for further investigation and thinking of mention PMR to them but I have a strong feeling they will dismiss it due to my age.
Thanks 😊
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MsWhistledown
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Yes you can - as you’ve found out it is rare- but that doesn’t mean it doesn’t happen… and many under 50 do find it difficult to get a diagnosis because of that. However there are younger members on here who hopefully will be along to reply.
Have to say all your symptoms do sound very PMR ish…and maybe GCA [although again age comes into it, so might be Takayasu's arteritis]
….and I’m guessing as you have RA in the family that is the one thing you are being test for…. to rule in or out.
If you can find an enlightened doctor who can get past the age thing they may be willing to consider PMR/GCA or TA and start you on a trial of steroids. Hope so, please let us know what happens on Monday.
I’m back from the hospital and I have been released. With no sign of serious infection and inflammation levels coming down (although not back to normal). Viral infection has been the possible cause with tenderness under my eyes relating to my sinuses. Sent home to rest, take paracetamol, lots of water and inhale steam.
My headache and stiffness was improved this morning although not completely gone. Neck pain has improved but again not completely gone.
Could this all be down to a viral infection?
If things don’t improve this week however I will return to my GP and ask for further investigation.
Yes, you CAN have PMR under 50 and Prof Sarah Mackie in Leeds says she has had several patients in their 40s. There are several papers/articles which specifically warn about missing the diagnosis because of a fixation on age. It isn't common - but that does NOT mean it doesn't happen. The youngest patient with PMR in the literature was 24!
I hate to say this, but what you are describing COULD fit with GCA and that could put your sight at risk. I don't know what the youngest non-juvenile GCA patient has been but I do know there was a man in South Wales who died of a stroke - and he had had unrecognised GCA. He definitely had it - the pathologist found it at the post mortem for a sudden death,
There is also Takayasu's arteritis, histologically identical with GCA, which is usually found in under 40s - quite what makes them think the propensity to develop GCA disappears for 10 years and then returns defeats me!!!! It is also NOT limited to young Asian females, it has been found in a variety of ethnicities. One lady on the forum in the past was originally diagnosed with Takayasu's and noticed it had been changed to GCA on her notes so asked why - because you are now 50 was the reply. And how ridiculous is THAT?
I have told you this not to scare you but so you have some facts to present if doctors insist it can't be GCA.
You could arrange an urgent eye examination through UES:
and they could examine the back of your eyes to see if there is any sign of AAION - the optic nerve becomes pale and swollen if there is a restriction of blood flow to it and one cause of that is GCA. It can be chronic like angina or sudden like a heart attack.
That isn't a 100% answer but it might help. They can examone the back of your eye - the ED often doesn;t have the equipment.
However - if you develop ANY visual symptoms, please go straight to the ED/A&E, preferably at an eye hospital if there is one close to you but the ED if not.
Thank you so much for replying and with these links which I can use for Monday. It is good to know that there are younger people that are being diagnosed.
I was actually just watching a GP programme with an elderly PMR patient and she got the "only happens in over 50s" spiel but he didn't tell us that it is very very unusual in black and Asian ethnicities and the lady concerned was Jamaican judging by her accent! He also announced it affects upper body - but actually it can affect the hips too. They tend to pick and choose criteria!
It makes me wonder how many people are wandering around today barely able to move and they just put it down to old age. When something could improve their lives
My now retired GP put PMR symptoms down to old age for 5 months. Pharmacist urged me to insist on bloodwork for RA. Markers came back very high. Urgent referral to a Neurologist, who diagnosed PMR.
I think that's the one I saw a while ago, one morning she just couldn't get out of bed she said. I was gobsmacked for several reasons: it had come on suddenly, the young GP knew what it was, she wasn't that old (late 60s?), and Caribbean rather than the stereotypical Viking/northern European ancestry.
Although the medical profession do tend to give you the idea that when we reach the age 50 the PMR jumps up and down saying “goodie they can get PMR now”, people under that age can get it, although it is much rarer. The main problem is that diagnosis is a matter of eliminating other things. Taking around 15mg of steroids for a week or so and seeing if they suddenly make life worth living again can point to PMR. High inflammation markers can indicate PMR, but that does not happen to everyone and the markers do not just get raised for PMR, but for other things too, even a cold. I hope that things can be sorted out for you next week.
I am one of Dr Mackie's patients and I was under 50 when I got PMR. 2 years on and I'm almost back to normal.
But it did take one hell of a journey (8months) of many medical people not knowing what it was and diagnosing all sorts of things before I finally got taken seriously by a Rheumy.
Thank you for sharing your experience. I am glad to hear you getting back to normal now. I’m thinking I might insist on being referred to a rheumatologist considering my symptoms and family history. I also have autoimmune thyroid disease/under active. This was only diagnosed in June this year. I have heard that once you have one AI disease you can often develop another one…
I’m sorry you’re having a bad time and hope you’ll get some answers and treatments soon. I too have RA in the family and definitely had PMR symptoms in my 40’s however due to my age it was dismissed. It took a physio telling the GP what tests to run for me to be diagnosed and by then I was over 50 with truly debilitating symptoms. I’d never even heard of PMR back then. I’ve heard a few people on this forum talking about their diagnosis and they were in their 40’s. Good luck with tests and hope all will be okay for you x
You can have PMR under 50. I was 48 but they did take a long time to allow me onto steriod which did help dramatically.. I am now 56 and they are still not sure what my auto immune is. I am currently stable and doing well so I am not so worried about diagnosis at this point. Good luck on this journey!
I didn't get any kind of diagnosis until last year, aged 64. I have had these symptoms on and off since around aged 43. So if I didn't have it then, I'm inclined to believe that I don't have it now. One rheumatologist agreed that I had probably had it for about 20 years and one said quite categorically, I couldn't possibly have had it so young, so it seems to depend on who you see. Mind you, besides the auto immune issues, there seems to be a question mark over some endocrine involvement with my illness now. From my journey, I found out that there is a lot of cross over in symptoms with these AI illness and you have to allow them to investigate to find out what is going on for you and that can take time. Plus, you can have more than one condition at once, which can confound diagnosis. And on top of that, even the experts don't agree with each other. I learnt that you need to be a lot more dogged in accessing medical support than I have been, and that can be hard when you are not feeling well. So, what I am saying, is keep on at them until you get an answer that you are satisfied with and don't expect it to happen overnight. And if you get any involvement with your eyesight, then treat it as an emergency. I had an emergency with my eyesight in May, which turned out not to be GCA (thankfully), but I got to see an ophthalmologist. Out of everyone that I have seen, she made the most sense, she reassured me about the possibility of GCA, but she also answered a lot of my questions about PMR and I felt so much better after I had seen her. Best wishes in getting the answers you need.
Thank you and yes I will keep on at them to get to the bottom of this. I already have autoimmune thyroid disease, so yes like you said, we often have more than one, so I am wondering if this is another I have developed.
Same here. I am waiting for a neck scan to look at my thyroid. My blood results for TSH and T4 were normal, but I have pain in that area and the doctor says that it seems enlarged. I'm trying not to let my imagination run wild. Like it does.
Make sure they test your T3 if you can. This is actually the most important marker to tell if your thyroid is struggling. I had to get mine tested privately because NHS doesn’t test it. If you ask for it sometimes they will test it. Some labs won’t. Having the scan is really good though. It will definitely show up if anything is going on. Good luck 😊
I am 55, and was 49 when it started. I have PMR according to my current Rheumy, but he still writes PMR (OBS= and possibly a Reactive arthritis in my journal! He does not want to go against other doctors. I was on a long journey to get here, through neurology and endocrinology several times, but then again I do not have elevated CRP, and they never test ESR here. I had the exact same symptoms as you describe, but also lost a lot of weight (was overweight).
Maybe besides all the links you have received here, also try to tell the doctors, that NOTHING in your biology/physiology changes on your 50th birthday! It is an arbitrary number picked at random at some point in time. BUT if the criteria says that you NEED to be over 50, then of course it becomes a self-fulfilling prophecy that no one under 50 has PMR - good luck
Hi, I was diagnosed with PMR at 44 in 2020. My symptoms started in June 2020 as aching and pains I put down to being less active in lockdown. The onslaught of symptoms happened very quickly for me, bi-lateral pain in shoulders, arms and hips and very ‘classic’ PMR symptoms to the point where I couldn’t get up from a chair, sit on the toilet or turn over in bed. I phoned my GP and had an extremely understanding doctor who told me that although I was too young she would prescribe me the steroids because I was really suffering. Within 3 days of being on 15mg of Prednisolone I was back to my normal self. This was end of August 2020 and I saw a Rheumatologist in December 2020. She couldn’t deny it was PMR. I spent 2 years on steroids, got to 0 once and went back on within 2 months due to a flare but I have now been off steroids for 18 months and things seem fine. No pain, I’m weight training and exercising again. I stay on this group as my safety blanket because I don’t want to try and find them again if I ever have a flare but touch wood all is well. So to answer your question yes you can get PMR in your 40’s but it is rare and I was lucky to get through it so quickly.
Thank you for sharing your experience. It is so good to hear you had a positive experience with your GP.
I have had some weird symptoms with my legs and hips prior to what I am suffering now with my shoulders, neck and head. I have had radiating aches in my groin and thighs and sometimes it goes down my whole leg. And I have noticed for sometime I can no longer do more vigorous exercise. It leaves my muscles and joints aching so badly especially my hips and legs and I get so fatigued. This never used to happen. I used to feel better for exercising. So, I wonder if this is connected. I have stiff hips and back but at the moment it is my neck and shoulders along with my head that is causing so much pain. Lying down makes it worse.
100% yes. Mine started when I was 48/9, however, they don’t like diagnosing it pre 50 years old. Eventually I had a PET/CT scan that showed it crystal clear.
It started with what was thought to be a frozen shoulder. That progressed to the other shoulder a few months later. I also had extreme pain trying to bend my legs and across my hips. My inflammatory markers in my blood were high and have stayed high. I did a trial of 15mg Prednisilone and within a matter of hours, my pain has become much more bearable. I’d become so ill that I couldn’t shower myself or get dressed so I wasn’t bothering. Turning over in bed was a nightmare. My biggest problem was getting a diagnosis because of my age and also because I have Ankylosing Spondylitis. The two things are very different for me. I suffered terribly with side effects from the steroids so in the end I stopped taking them. Of course all my symptoms have returned. I’m about three years or more into this now. I have carers in every day to to help. X
In the UK, yes. Some countries allow the use of a biologic drug called tocilizumab which is used for GCA or a newer one called Kevzara which is for PMR but the UK hasn't approved them. They are very expensive -about £12K a year.
I was diagnosed by my GP at 48 and 9 months. However, not a single rheumatologist here (USA) will agree with his diagnosis because of my age. It is so frustrating because they want to treat me with a vast array of other drugs instead of steroids since they don’t agree with my diagnosis.
My symptoms started with sudden onset hip girdle pain. Within a month I also had severe neck and shoulder pain, and upper arm pain. I could barely walk, couldn’t dress myself or get in and out of bed or the car without assistance. It was worst upon waking and eased up if I could keep moving to the point where my boss bought me a standing desk so I didn’t have to sit down. A month of PT didn’t help at all… the only thing that gave me any relief was deep heat (like a hot tub).
My GP ran a gazillion tests to rule out RA, Lyme, menopause, RA, thyroid, etc. He took xrays. The only thing that came back abnormal was my ESR. He suspected PMR and gave me a trial of prednisone. Within 4 hours the pain eased and in 24 hours I was 80% improved.
I am now at the 4 year mark and at 1.5mg (down from 20). I am still fighting rheumatologists who want to put me on other medications. It’s maddening and frustrating. (My GP left the practice and they haven’t found a replacement so I am in a precarious position if the next GP won’t treat me. In the US GPs rarely treat anything a specialist can.)
Given your symptoms, I would want them to rule out every other possible diagnosis since PMR can only be diagnosed by ruling out other things. And given the headaches I would push for GCA testing before they put you on any steroid trials.
Could I just ask is itching of the scalp and above the eyebrow, like something crawling under the skin a symptom of GCA? Also had some tenderness to touch on the scalp and side of face about 3-4 weeks ago?
Itching is not one of the common symptoms of GCA, but that’s not to say it couldn’t be - never was in my case. But tenderness on scalp certainly is, and side of face could be if it’s near jaw area.
There is a Facebook PMR support group with over 17,000 members where this question is asked a lot. Yes, there are plenty of people who get it under 50.
It is far.more likely to be something else therefore you must be investigated fully and should be referred to rheumatology if they suspect PMR (or aren't sure) because of your age.
Please, as PMRPRO says, go to A&E if you have any visual disturbances or that headache changes.
Hi. I am 51 and was diagnosed 18 months ago so I was under 50 then. I was fortunate as my doctor's uncle had been recently diagnosed so she had been studying it! I had slightly raised CRP (18) but ESR was fine. Started me on steroids and immediately felt no pain. I'm now down to 3mg and although I do have a little pain every now and then and have had to tweak either the amount I am taking or lengthen the taper I am feeling pretty good (menopause too doesn't help!). She said that your markers are only part of the diagnosis is how you feel and how well you react to steroids. Good luck!
FWIW I was diagnosed at 51 or 52 and it took a while then (about 14 years ago ) because at that point GP and rheumatologist said PMR was very unlikely as it mostly affected late 60s and over 70s! Am glad there’s greater recognition that PMR can affect people at a younger age than previously assumed. I told the rheumatologist (when I was finally referred) that I was sure it was PMR as nothing else seemed to fit and he was very doubtful too til he did some tests. To her credit the GP did realise I had something seriously wrong and it was not, as I’d assumed, repetitive strain. I’d gone to see the GP for referral to a physio for my presumed RSI. So she ordered a major blood panel. It is depressing though how unfamiliar GPs still seem to be about something which affects so many. And hope PMR awareness will keep expanding and it won’t be so easily dismissed as a possibility in people who fall outside presumed age thresholds.
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