PMR DIAGNOSIS

[Blossom72]

Hello, my GP has almost diagnosed me with PMR, only thing preventing him is my age, 47. Have had the symptoms for 15+ years, but now getting to unbearable level. Waiting on appointment with rheumatologist next week. This is first time PMR has been mentioned. Can I ask you all what age you were when diagnosed? TIA.

[DorsetLady PMRGCAuk volunteer]

Hi,

Most a lot older, but quite a few in low 50s. Below 50 is unusual- but not unheard of.

Hope you soon get a definitive diagnosis.

[Emerlad_70]

I was 70 when diagnosed but have had it about 3years before

[powerwalk]

Can I ask what have your symptoms have been? Just wondering as I had a lot of symptoms for a long time before I was diagnosed. Though I was in my fifties when diagnosed. Thank you.

[JulianJ]

I was 55 when I was diagnosed, took a few months and that was mainly be being a man and not going to the doctor

[Soraya_PMR in reply to JulianJ]

😂🤣

I recently dragged hubby to the docs: “How long have you had this problem?” About a year he replied. “Why did it take so long to come and see me?”

Because it took a year of nagging to get him here!” I said.

[JulianJ in reply to Soraya_PMR]

It wasn't a year for me, but there was some nagging. Since getting the diagnosis I have opened up a lot and am now quite happy to talk to anybody about it, but before I was the typical man!

[Constance13]

Welcome.💐

47 IS young, but you won't be the youngest on here!

15 years of symptoms? Doesn't sound too much like PMR!

The experts will be along soon but it would be any idea if you explained those 15 years first.

[Soraya_PMR]

As you’ve been waiting 15 years, then another week to see the rheumi is not too bad. Best that the rheumi sees you ‘as you are’ with all the aches, pains, stiffness etc in it’s full glory! The diagnosis would be hindered by pred I think.

I’m inclined to agree with Constance, PMR at 47 is not unheard of, but if these are the same symptoms since age 32, then it’s more unlikely (but not impossible). It’s only relatively recently that the guideline age has dropped from 60+ to 50+

I think your GP is doing the right thing by seeking rheumi opinion.

Are your ESR and CRP raised?

What are your symptoms over 15 years?

[PMRpro Ambassador]

If you have had the symptoms since your early 30s - that does make PMR as the diagnosis less likely. Not impossible though. 47 is no problem - PMR doesn't ask what birthday you got to last time! But there are several things that can present looking just like PMR - "inflammatory arthritides with a polymyalgic presentation".

Why has your GP ignored you for 15 years? And why has he plumped for PMR?

[OutdoorsyGal]

65, and I would not have lasted for 15 months, never mind 15 years, with my symptoms. I barely tolerated 15 days! It was not a gradual onset but an almost overnight aging of 20 years! And prednisone reversed it practically overnight.

Good luck getting your diagnosis sorted out.

[Hidden]

The more I read and learn about PMR, the more I believe it’s not a definitive condition. That is, symptoms, onset age, treatment response and remission/end of disease etc.

It seems a majority present with similarity. But then there are variables; age, gender, symptoms, bloods, scans...It’s been said before; this isn’t a one size fits all disease. So stick with what you feel and want. Maybe a few develop the condition earlier than the ‘norm’ ( or indeed later) but that doesn’t rule it out. I’m no expert, but it’s a syndrome full of anomalies and sometimes we have to fight for best referral/treatment options and this site is an informed and invaluable resource. Knowledge is power so keep informed and don’t give up.

[PMRpro Ambassador in reply to Hidden]

It isn't - PMR is not the illness, it is the name given to a particular set of symptoms which can be due to a range of underlying conditions - inlcuding a few cancers. What we talk about here is probably a vasculitis, closely related to GCA, which responds well to moderate doses of corticosteroids. Some of the other causes also respond to pred though generally not as well or need higher doses. Unfortunately too many doctors believe that response to moderate dose pred is a diagnostic tool - it isn't, it is one of a range of clues. But given there is no cure yet and management is all in terms of quality of life, as long as they find something that works I suppose we have to be grateful!

[Blossom72]

Thank you so much for the comments. I’ve had pain for around 15 years. A lot of time unbearable. I live on Naproxen. I need to take every day even then it doesn’t take pain away totally. CRP is usually in 20s not sure what ESR reading is.