How rare is it to be diagnosed with PMR at age 45?

[LeonardCohen]

I am writing to ask advice from this excellent Forum which has been such a help to me in the 3 years since I was eventually diagnosed with PMR, having had a nightmare obtaining help and support due to Covid, lockdowns, lack of face to face appointments etc.

My own journey remains a struggle, but I'm following slow tapering and trying to kick start my adrenals from that difficult reduction stage of 7,6,5 mgs of Pred, which I have only learnt about because of my fellow PMR sufferers on this Forum. At last I have a Rheumy showing interest and helping me with this.

My 45 year old son just told me this weekend that he has been suffering with extreme pain in his lower back, neck, bilateral shoulders, and struggled with weakness in his arms and very heavy legs for the last few months. He has tried seeing a physio and a chiropractor , but was seen in a private consultation last week and was advised to ask his GP for blood tests to check out inflammatory markers. These came back as raised. The GP has given him a preliminary diagnosis of Polymyalgia, although he agrees it is rare in someone under 50, and very rare for his age (He was 45 in May ) He has been given 20mgs of Prednisolone to take daily over the next two weeks , then will be reviewed. He is normally a very fit and active man , who has always been a serious runner/harrier , completed marathons, half marathons, triathlons, and currently cycles for well over an hour several times a week to get to and from work. He is still managing to cycle, but has felt too ill to go running for the last 4 months. He lives in a different part of the country from us and probably thought I'd worry about him, so he has kept much of this from us until recently. But with this initial diagnosis being PMR, like mine, he felt he could share the news. Incidentally, after only 24 hours on Pred, many of his symptoms improved dramatically, but he still had some neck pain at the weekend when I was with him.

I have read Kate Gilberts excellent book and she strongly advocates that people of my son's age should be seen and diagnosed by a rheumatologist rather than a GP. My huge concern is that an assumption of PMR has been made and he may not get further investigations to absolutely rule out other auto immune illnesses, or indeed any other cause. I want to advise him to seek a second opinion, and definitely ask to see a Rheumy, as I am concerned other causes of his symptoms will be missed.

Can anyone give me advice please? Does anyone have experience of PMR being diagnosed in one so relatively young?

[piglette]

Although it is usually mentioned that people get PMR when over 50, there are people on this forum in their 40s who have PMR, so it does happen.

[LeonardCohen in reply to piglette]

Thank you for your prompt response, piglette. I think I'll suggest to my son he considers joining the forum himself, so he can be in touch with these younger people. Thanks

[PMRpro Ambassador]

Mine started at 51 - yes, over 50 but I wasn't diagnosed until I was nearly 57! The GP didn't know what PMR was I suspect and the rheumy I did eventually see wasn't wanting to say PMR although I was pretty much textbook really other than no raised markers and I had a perfect response to 15mg pred in under 6 hours. He wanted it to be an inflammatory arthritis although nothing has changed in the 15 years since to suggest that it is and my rheumy is a world expert in PMR. Many rheumies are very dismissive of PMR, thinking it is a benign disorder of the elderly - but that is changing. It is a highly complex and potentially very disabling illness and is now considered an integral part of a spectrum of disease including GCA and LVV.

Prof Sarah Mackie in Leeds says she has quite a few patients in their 40s. Yes, it is rare, relatively speaking, but there are recorded confirmed cases of GCA in patients in their 30s and the youngest patient with a dx of PMR in the literature was 24!

pubmed.ncbi.nlm.nih.gov/967...

One problem is one of bias - so many doctors believe it CAN'T happen in younger patients so when a younger patient appears with the typical symptoms they dismiss it as impossible. This leads to a fairly typical response of deciding it is fibromyalgia - despite raised markers - and the patient being led to believe there is next to nothing that can be done or an inflammatory arthritis which is then unresponsive to the DMARDs offered.

The basic blood tests should rule out some of the possible differential diagnoses but the rheumatological alternatives probably are better investigated by a rheumatologist - but the time required to get a referral may extend into months. Where in the UK is your son?

[LeonardCohen in reply to PMRpro]

Thank you so much for your prompt response and sound advice, as always, PMRpro.

I think you're saying that I should trust the diagnosis thus far, and hope my son will be followed up appropriately. He lives in Outer London, postal address is Kent. I suspect that he might not have had such a swift reaction, rapid blood tests and immediate results, had the GP not been nudged by a private doctor.

I know exactly what you mean about the likely delays in seeing a Rheumatologist. The NHS is not seeing PMR patients as urgent, because of all the other pressures on the service. I was seen briefly by a Rheumy back in 2022, treated almost dismissively because it was 'Only PMR!' But because of all my problems with tapering and reawakening adrenals, I asked my GP to re-refer me. It has just taken almost 9 months for me to be seen by a Rheumy, but at least they are now being much more supportive. Incidentally I live in the North East of England.

I will ask my son to look into the work of Prof Sarah Mackie, if she is interested in younger PMR patients. He worked for 10 years at Leeds Uni so is familiar with the city. I will also encourage him to join this excellent Forum himself. Thanks again

[PMRpro Ambassador in reply to LeonardCohen]

And as mentioned by someone else - if your son needs a private rheumy who believes in PMR in under 50s - Rod Hughes in Chertsey. Sarah is actually recruiting for one study - I wasn't listening properly when she said, but it is possible to contact her by email about it so it wouldn't be unreasonable for him to write to her about "young PMR".

[mpartrid]

I was diagnosed at 46, 2 years and 5 months ago, currently down to 3.5mg. Have seen 2 rheumatologists during that time including Rod Hughes who both agreed with the diagnosis.

[LeonardCohen in reply to mpartrid]

Thank you for your prompt and relevant reply. Very similar age to my son at onset of PMR. I'm delighted you have managed to get down to 3.5 mgs, well done. It's taking me much longer, as I'm still struggling at the classic difficult stage of getting below 7, then 6, then 5 mgs. In my case I think I was left too long without a diagnosis, then left too long without good advice about tapering, and without support.

Obviously, because of my experience, I want to try and help my son have the best outcomes and best advice he can get. Although I have said to him, his Mum's experience and journey with PMR, doesn't have to be his. I was 68 at onset and nowhere near as fit as he is. Thank you again for your comments.

[S4ndy]

I was diagnosed first when I was 46. I didn't take steroids at that point and after a few years I was no longer symptomatic. However when I was 54 PMR reared it's head again and this time was much worse. I needed an initial dose of 30mg to get 70% symptoms relief.That was in 2016.

I failed to get below 10mg for a long while and so saw a Rheumatologist. Using a very slow taper I got to 5mg by 2019. I stayed there under my consultants advice until 2024.

A couple of months ago I saw my consultant and we decided to try a very slow taper to 4mg over 2 months. I have been able to achieve this. He advised me to stay there for a few months then maybe try another slow taper.

All I will say is that the degree of symptoms I had when I was 46 was mild compared to the reoccurrence in 2016. I had to give up working. I do have other health issues though so probably these had a major effect on my decision.

There's quite a few of us who have been diagnosed in our 40s or 50s on here. Interesting, my son, who is 43, has recently been complaining of extra hip and shoulder girdle pain. He has not been diagnosed with PMR though.

[sidra1968]

Yes, anything is possible. For instance, my husband had a CRVO (Central Retinal Vein Occlusion - essentially an eye stroke) at age 43..the Dr. who has been in practice for 40 years had never seen it in anyone that young (usually 70+), but alas, it happened nevertheless.

Throw in a possible heredity component, and I would not be surprised at all if it's PMR. Glad the Pred has helped him so much.

[LeonardCohen in reply to sidra1968]

Thank you for responding sidra. Sorry to hear about your husbands difficulties, especially at such a young age. I hope he is managing ok.

Although it has been a shock to learn of my sons diagnosis, in someone so young and superfit, I can only feel relief that it has been picked up quickly. Hopefully he will get the treatment he needs, a lot sooner than I did three years ago, as he obviously wants (and needs financially) to keep working full time. Best wishes.

[sidra1968 in reply to LeonardCohen]

Thanks Leonard. Actually, he has made a 95% recovery after one eye injection. And literally BECAUSE of the young age, the Dr. said he has never seen a recovery like his...the photos of the back of his eye are a night and day difference in 2 years. His body even grew new vessels to pool the blood into. Again, his young age and body helped do that..all quite interesting from a scientific viewpoint (to me anyway)