PMR myth busting #2 - that PMR is an older woman's disease

[Fran_Benson]

The second post in our PMR myth busting campaign is live this week.

We often hear from patients that PMR is an older woman's disease. It's true that more women than men get PMR and that the most common age for diagnosis is in the 70s, but many are younger. We also know from feedback that this can cause delays in diagnosis.

We have posts appearing on Facebook (facebook.com/pmrgcauk) and Twitter (twitter.com/PMRGCAuk), an email to all our members and information on our website.

Please share this information with other patients, friends and relatives, in other PMR forums and with your clinicians.

Visit our website for the facts pmrgca.org.uk/pmr-myth-bust...

Be part of the campaign - together we can help more people.

If you want to share your story of getting diagnosed with PMR at a younger age, please do reply and also indicate whether you would be happy for us to use your story in any further marketing.

Fran

[Koalajane]

thanks for this. On a Facebook page (not this one which is really good) it was said there are many people getting it in their 30s.

[Fran_Benson Partner in reply to Koalajane]

That's odd. I'll check it out. I wrote it but I didn't write that, so I'll see what's going on...

[Fran_Benson Partner in reply to Fran_Benson]

Ah, just realised you're not referring to our Facebook page.

[Koalajane in reply to Fran_Benson]

No on another Facebook site

Polymyalgia rheumatica support

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

Might be useful if you linked it to Fran_Benson [Chat if you don't want to put on here] so she can see what's being said.. and by whom..

[Koalajane in reply to DorsetLady]

If I can actually find it again on Facebook!

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

Good luck with that then!

[Koalajane in reply to DorsetLady]

Jane it’s not rare. PMR knows no age! I was just to my new Rheumatologist & she is seeing more & more patients even younger than 30.

This is the comment I saw!

it is on the Polymyalgia Support page on facebook

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

thanks

[DorsetLady PMRGCAuk volunteer in reply to Koalajane]

Just had a look… it’s a private forum isn’t it, and says it’s not affiliated to any organisation- so not sure I’d guarantee validity of some of the replies….

[Koalajane in reply to DorsetLady]

It is used by a lot of Americans.

I go on it to tell them about our wonderful forum and charity!

I find some comments quite concerning

[Mfaepink1973 in reply to Koalajane]

Me too! I’ve recommended to people posting on there that they look on this site as a lot of bad advice was being given out on that group.

[PMRpro Ambassador in reply to Koalajane]

Hope she publishes then!!!!

[PMRpro Ambassador]

Or NOT being diagnosed at a young age? I had the same symptoms from 51 - but it wasn't diagnosed until I was nearly 57!

[Lookingforideas]

I was 61 at diagnosis in January 2020 although symptoms started late November 2019 - now I’m 64 and on my first two or three weeks of 0 Pred - after a very very slow and cautious taper - still on extremely high alert for any recurring symptoms though😳.

I don’t think my story is very exciting - it took a couple of months to get diagnosed and I had already found the PMRGCA info on HU before official diagnosis, so I was dropping info from there into my GP appointments & then to my Rheumy consultant appointment where she prescribed the first Pred prescription - just in time before lockdown 🤪, so maybe that speeded my experience up a bit? but you’re welcome to it if it’s of any reassurance to anyone that (hopefully) it will eventually go away - although I’m still not counting my chickens 🥴

[Gimme]

Tell this to my rheumatologist. He told me quite categorically that I could not have had PMR in my early 40s as it simply doesn't happen before age 50.

I have had a pattern of exacerbating and remitting symptoms since around age 43/44 and was finally diagnosed Nov 22 aged 64. More than one physio in my 40s told me that I needed to see a rheumatologist and I have a long history of going to the GP with extreme fatigue and the classic hip girdle symptoms that we are all familiar with. I was not taken seriously until last year I was seen by a very young and enthusiastic doctor who quite confidently told me that I have PMR.

I saw one of the GPs yesterday and mentioned that although the symptoms that I now recognise as PMR did not start until early 40s, I had had intermittent musculoskeletal problems that I had always put down to sporting injuries, going back to my early 20s. She smiled, and said hmmm, so there has been inflammation all along, interesting.

My observation is that younger doctors seem more open to the idea that age of onset may be much younger than the textbooks suggest. They also seem to understand that the duration might be longer than the magic 2 years and the GP I saw yesterday said that we all want to get me off the pred, but my body will have other ideas and it will take as long as it takes. At last, someone who understands that I am not an under achiever if I don't make it to a set timescale.

Anyway, where I am going with this is that the younger doctors that I have seen seem more receptive to these ideas than those who were older. Maybe they teach them something different in med school these days. But my question is, if that experience is widespread amongst patients, then what impact does that have on the demographic of the doctors that need to be targetted with this campaign and how can that be done? tbh, I don't feel confident about challenging the rheumatologists, I already feel far from robust from the PMR and the pred and less able to stand my ground than when I have been well.

[PMRpro Ambassador in reply to Gimme]

A very good question and one we'd all like an answer to!!! What we need above all is NOT a new drug but a definitive test for PMR. Oh for an antibody ...

[Gimme in reply to PMRpro]

oh yes, that thought crosses my mind often; what we need is a proper test, instead of this maybe/maybe not nebulous diagnosis. The rheumatologist that I saw last week (yet another different one to before) was unsure if my diagnosis was correct Though I was glad that he was entertaining the idea that there might be something else going on besides PMR, which is what I have been saying all along.

[Sailormo in reply to Gimme]

Hi I recently met a Doctor when I was having my knee replacement, hee was so understand he said his mother had pmr for six years,he said not enough was known about it,I whish he was my G P sometimes you feel no one is listening, and of course it really knocks your confidence.