The age thing...

[79andCounting]

I just read someone's issue with their rheumatologist denying PMR due to her age and that brings up something I've been wondering about. When I was going through a divorce at age 27, in an extreme amount of stress, I developed pain in neck, lower back and both hips. Over the years knee & shoulder pain followed.

At various times, by various doctors I was told my pain was due to the "early stages of arthritis", arthritis, bursitis, tendonitis, capsulitis and simply 'inflammation'. Decades of pain, interrupted sleep, loss of range of movement, at times unable to dress myself, etc..

Finally at age 78, excruciating thigh pain was added to the mix and after four months of testing and repeat testing, I was diagnosed with PMR. Within hours of taking Prednisone, ALL pain in ALL parts of my body was gone and over the past 3 months I've regained a lot of the range of motion in all joints.

My point is... do doctors have their heads up their collective butts about the age thing? I've read stories from many other people who were told "they're too young for PMR". How and why did they decide that 50 is the 'magic' age to develop PMR? And how can we get them to rethink that?

[piglette]

I believe there was someone in their twenties who was diagnosed with PMR who was mentioned on this board some while back. I suppose the bulk of people are over 50. Perhaps young people do have PMR and no one has realised!!

[Gimme]

Same here. I've had PMR symptoms since mid 40s, which followed a pattern of flaring and remitting. It was always there in the background, but I had some really bad flares that left me almost crippled for months. I was 64 when finally diagnosed. By chance, I was talking to my neighbour recently and she had PMR early 30s after the birth of her second child. However, she was diagnosed and on pred for about a year before she got it under control. She gets very occasional mild flares, but does not want to go back on pred. Both me and my neighbour had the miraculous response to pred that so many of us are familiar with, when nothing else touched the pain. My sense is that younger doctors tend to be more clued up. The doctor who diagnosed me was newly qualified and then when I saw the senior partner GP soon after he confirmed the diagnosis. But the rheumatologists have always ummed and aaahhed.

[Sophiestree]

I understood that in young people it was a diagnosis of Takayasu which then changed once past a certain age.

We're bloods taken when you were younger? I think it's a real problem where younger people get dismissed when presenting symptoms. I recall telling my GP on several occasions about my vice like grip headache but it was put down to my stressful job.

[79andCounting in reply to Sophiestree]

Yes, I've had countless blood tests done and the CRP was always within normal range, that's why it took SO many years to get a diagnosis. It was only my immediate reaction to Prednisone that finally convinced the rheumatologist.

[BettyE]

My PMR (aged 69 at the time ) was first misdiagnosed as arthritis for which my GP apologised but said he'd taken one look at my hands and jumped to a conclusion. Would that all would be so honest.

I was asked to stay for blood tests when I said that, most unusually, I had lost some weight. 'Phone call next day saying " Come back, we know what is wrong with you"

Four hours after my first dose of 30mgs, of Prednisolone all pain disappeared. I have wondered since what my bloods showed to give such an instantaneous diagnosis and why so many have to wait years.

[Rugger in reply to BettyE]

It is likely that your bloods showed raised inflammatory markers - CRP &/or ESR. If you look at my posts with "Graphs" in the title, you'll see how my markers went up with an increase in symptoms and down with an increase in the dose of prednisolone.

My GP knew what was wrong with me and confirmed it by the same blood tests. (age 68 at the time)

[BettyE in reply to Rugger]

Yes, I did later learn about ESR and CRP but why, if they were so conclusive in my case, do so many have to wait so long for diagnosis to be confirmed.

[Rugger in reply to BettyE]

Unless the doctor suspects an inflammatory condition, they won't routinely check the CRP & ESR. The 'usual' blood tests such as full blood count, kidney and liver function etc, don't show up the very things that might clinch the diagnosis. It's a process of elimination and they have to suspect something to request the appropriate test to confirm or deny their suspicion. Your weight loss was the red flag that alerted your GP to something else going on. (We also hear that some folks' CRP & ESR aren't raised in PMR, so that further muddies the water.)

We are both fortunate to have had GPs that diagnosed us without too long a delay.

[Gimme in reply to Rugger]

And then there are those of us who have never had raised inflammatory markers. But we may still get the magical response to pred. That's how my diagnosis came about. I was given some pred following a severe chest infection.

[NCStateLine]

What’s with many doctors thinking PMR is for extremely old people? Mine told me he hadn’t seen it (or I suppose realize he had seen it) in anyone under 80. I was 66 and thank God for a wonderful Rheumy where I got a second opinion. He told me that was ridiculous and they see it in people in their 50’s more commonly now. I was 66 with no markers and 20mg of pred eliminated all symptoms in 2 days. Currently at 4.5 and all remains great. I read somewhere through this site that average age is 69 of onset. Don’t remember what study that was from.

[79andCounting in reply to NCStateLine]

In my opinion, the "average age of onset" is actually the "average age when doctors finally look for it"! Having said that (which I truly believe) things are WAY better these days. In the 1960s & early '70s, when in my teens & twenties I suffered with thyroid disease for twelve years before a single blood test was even taken. I pestered doctors multiple times a year during that 12 years with my list of symptoms (some of which like low body temp, low blood pressure, dry skin, etc they could see for themselves) and they offered me diet pills & tranquilizers, suggested I take up a hobby, get a part-time job, do volunteer work etc. They had a preconceived notion that I was a bored housewife looking for attention and didn't even consider the fact that something was wrong with me! By the time it was diagnosed I could barely function. So, while I complain about some of their stodgy old-fashioned ideas, I'm also very grateful that women are taken more seriously in today's world.

[PMRpro Ambassador in reply to NCStateLine]

Well he was way off - the admitted average age of diagnosis is 72 - and since many older patients have it, there need to be a load younger than 72 to bring down the average!!!!

[Body_bonkers]

The strict adherence to age is just ridiculous and I’m sure it is not applied like this to other medical conditions. My symptoms started at 47 and told the GP’s something was systematically attacking my body but after multiple visits and normal bloods they dismissed me as just getting older ? and needing to loose weight ! About eighteen months later my feet had this unusual swelling and I saw a young registrar who gave me a PMR diagnosis. I could not be treated however due to age so had to wait for rheumatology consultation. By that time I could barely dress or wash myself and was contemplating sleeping downstairs. I became so weak, lifting a kettle was difficult. I previously had no mobility issues. Nothing I had tried helped but the feeling from the first dose of steroids I shall never forget - within hours most of the pain and stiffness disappeared. Despite this the GP’s still did not think I had PMR ! Having had an atypical PMR diagnosis from second rheumatologist and just turned 50, I hope this issue is now behind me. A third rheumatologist was emphatic it could not be PMR even at 49 despite not having a clue what else it could be. I was lucky to see that registrar and sincerely hope it is a sign that education is improving. I’m glad you’ve finally found some relief too

[79andCounting in reply to Body_bonkers]

😊

[PMRpro Ambassador]

The youngest patient mentioned in the lierature classified as having PMR was 24 years old. They were both male.

There was a paper published in 1985 which mentioned "a mean time to discontinuation of pred of 23.7 months". I believe that figure has been picked up on and totally misunderstood. Mean is the time for half of patients to stop pred and that is possibly not far off - but half of us need notably longer and quite a few of that short half relapse within a short time. And it is compounded by the fact that they aren't looking for it in younger patients so when they do see it - they deny it.

pubmed.ncbi.nlm.nih.gov/403...

[Gimme in reply to PMRpro]

That's what I think too.

[AtopicGuy]

The history of PMR and GCA makes interesting reading. This article is from 2000:

clinexprheumatol.org/articl...

My auntie, who died in the 1970s, used to say "Rheumatism is what they say you've got when they don't know what you've got"!

[DorsetLady PMRGCAuk volunteer in reply to AtopicGuy]

Well at least Polymyalgia Rheumatica sounds better than original description of Senile Rheumatic Gout…

When diagnosed in 2012 my GCA was referred to as Temporal Arteritis by the registrar ophthalmologist even though that was one artery that wasn’t affected…and the only thing I have in common with ‘the blind harpist’ is the sight loss…😊

[AtopicGuy in reply to DorsetLady]

Indeed. Imagine telling a friend you'd been diagnosed with "senile rheumatic gout"! Creaky old drunk, perhaps?

In my day, blind people were encouraged to become piano tuners, not harpists. I was fascinated whenever the guy visited my primary school in the '60s.

[DorsetLady PMRGCAuk volunteer in reply to AtopicGuy]

Creaky old drunk

Couldn’t possibly comment! 😳

[Gimme in reply to DorsetLady]

🤣

I think I might qualify.