Polymialgia in my 50’s

[Pangolin43]

Hello everyone ,

I am 59 years old and have been diagnosed with PMR. I keep being told I am too young to have it. Is anyone else under 70 with this condition?

[Theziggy]

Yip I got it in my late fifties

[PMRpro Ambassador]

Who is telling you that you are too young? Many of us on this forum developed symptoms or were diagnosed in our early 50s. You are NOT too young, all the guidelines say over 50 as the age range although that is NOT a magic cut-off date, it is just that it is uncommon under 50 and it must be considered it may be something else in young patients and that has to be ruled out.The AVERAGE age at DIAGNOSIS is 72 - since there are a lot of people over 70 who have it, it follows there must also be a lot of people in younger age groups to being the average down.

[Topcar]

I was diagnosed at 62 so not that much older than you!! Hope you get some relief soon take care 🌈

[TheMoaningViolet]

I was 52 when I was diagnosed, and while I was considered to be at the younger end of the spectrum, it was not unheard of at all.

[tangocharlie]

You are nt alone - I got it early 50s and had a hard time getting 2 rheumatologists to accept it was PMR and not fibromyalgia or psoriatic arthritis.

I created a this post a while ago - you might find reponses interesting

healthunlocked.com/pmrgcauk...

[Pangolin43 in reply to tangocharlie]

Thank you for pointing me in the direction of the old posts. They are really interesting to read and helpful too. 😀

[Kendrew]

I was diagnosed after just turning 61yrs.

[Canarylady]

Hi there,I ve got it.

Was 55 years old!

Why do doctors keep saying this to us!?

I ve moved from the seaside to Newbury and my new doctors says I m too young to have it!

Makes me so 😡 mad.

I m going through a nasty flare up at the moment and just can t get past 13 mg of pred,I m working full time over 40 hrs a week again,but need this job to pay my bills otherwise I would love to work partime so I can rest more and get my life back again.

Doctor offers no support whatsoever,I live on my own.

Find some days impossible to move and get out,but we have to!

He has arranged an emergency appointment for me to see a new rhumy but it’s not for my pmr!!just my painful joint situation!

I told him it’s pmr still no response from him,wish I could see my old doctor who was just brilliant and understanding.

Please don t give up!

We re all here for you,other wonderful ladies and gents will be along with good advice soon,hope you don’t mind me answering your message.

Do take care and don’t give up on their it doesn’t happen in younger people.

Best wishes

R

[PMRpro Ambassador in reply to Canarylady]

What hospital are you being referred to?

[Canarylady in reply to PMRpro]

Hi pmrpro,

I m being sent to town lands memorial hospital,

Henley on Thames.

[PMRpro Ambassador in reply to Canarylady]

An outpost of the Royal Berkshire - wonder if anyone knows anything about their rheumatologists.

[Canarylady in reply to PMRpro]

I don t know?

I m just not getting anywhere,as I wrote before my doctor just isn’t interested.

And I ve got that feeling that this appointment will be the same.

I ve got to go back to work now,but will be on after 5,thank you for getting in touch ,

Take care

Ruth

X

[PMRpro Ambassador in reply to Canarylady]

Is this post better than the previous one?

[tangocharlie in reply to Canarylady]

I'm in my 9th year of PMR, currently in a big flare or relapse, and also struggling to get back down below 15 Pred, coming down from 40 in December. It must be so hard trying to work as that will be exacerbating things, I had to give up 4 years ago. Are there any reasonable adjustments you and your employer can make?

[artisam]

You're in good company; I was 59 too when diagnosed. Can often be regarded as an old people's disease so you have to fight your corner, but there are plenty of good doctors and rheumies out there and this forum is a godsend! Good luck🤞

[Arflane97G in reply to artisam]

Totally agree - you have to fight your corner to get the help and advice you need

[Ackrow]

Hi there,

I was 53 when diagnosed 2 years ago.

As others have said the advice on here is great.

Good luck 🤞

[Arflane97G]

I was diagnosed when I was 58 years old after an exhaustive series of tests. Interestingly my new rheumatologist thinks I may never have had pmr but rather another strange condition called reactive arthritis which others thinks I was too young to have! In any case, pred worked for me which I think is the final test. I have been pred free for 2 months (😊) now and should symptoms come back I guess I will start from the beginning test wise rather than it being an assumption it is pmr and I now have direct access to my rheumatologist so hopefully will get sorted out ASAP. Having said that I was fortunate enough to be referred to a rapid diagnostic unit fairly quickly after onset of symptoms. Good luck with your pmr journey

[PMRpro Ambassador in reply to Arflane97G]

Too young for reactive arthritis? That can happen in teenagers but it is most common between the ages of 20 and 40!

[Arflane97G in reply to PMRpro]

Oops my mistake - meant to say too old for reactive arthritis!

[PMRpro Ambassador in reply to Arflane97G]

I have to say - I don't see why you should be too old either!!!

[tangocharlie in reply to Arflane97G]

In Dr Dasgupta's talk with the physiotherapist he talks about the problems of diagnosis and says reactive arthritis is sort of on one end of a spectrum, with it at one end, GCA at the other and PMR somewhere in the middle. If I've understood it right.

healthunlocked.com/pmrgcauk...

[Loopy65]

Diagnosis at 54 here. Many GPs are just plain wrong on this!! Have to admit though that saying under 70 is too young is even sillier than the more usual under 50!

[H8062073]

Good morning, I was diagnosed this last November at the age of 59!!! I was never told that I’m young to have it( saying that I’ve never seen a doctor about this, only phone calls). Started treatment straight away, do exactly as I am told and, touch wood, things are going really well. Good luck with yours and take care.

[NickWarwick]

I was 56. Picked by a physio straight away last summer and agreed immediately by my GP after some blood tests. So i guess some are more clued up than others.

That said they persist with the notion that the exit route is pretty binary and as per their text book. Not true sadly.

Won't pretend anything other than this is a crappy disease, which has completely stuffed me from doing lots of things that i used to. But the advice on this forum is excellent, so pay attention.

Nick

[S4ndy]

Yes I was 46 the first time and it went into remission. Came back with a vengeance when I was 54 and I am in my 5th year now!

[Pangolin43]

Thank you so much everyone.. The comments are really helpful and I don’t feel alone with my worries. Can I just ask if anyone gets swollen and sensitive hands and fingers? 🍎

[PMRpro Ambassador in reply to Pangolin43]

I did - synovitis and tendinitis in my fingers was very uncomfortable. There is a condition called RS3PE which causes swelling of hands and feet.

[Pangolin43 in reply to PMRpro]

Thank you. I will investigate. My hands have little or no grip in the mornings. ☹️

[tangocharlie in reply to Pangolin43]

I have that, feet/ankles/lower legs in particular. I'm in a long flare/relapse at the moment that's lasted about 5 months, and since being on a high dose of Pred the hands are now OK - I'm amazed that I can do things like open bottles that I never used to be able to do. The legs were OK at 40 Pred but the problems returned with a vengeance once I got below 30, I'm now on 15. Whatever the cause of it is, it's something steroid responsive, perhaps another autoimmune thing. Both rheumatologist and GP are stumped. I was tested for heart failure, water tablets did nothing, I'm told to wear support support stockings which only seem to push the problem up to the knees. I'm keen to know the root cause as it does crop up in PMR forums. Maybe something to do with lymphatic system? When Covid restrictions are over I'm going to try physiotherapy and accupuncture

[Carrollee]

Hi 👋. I was 58 when symptoms started and 59 when diagnosed. Nobody ever suggested I was too young. All the best 🤗

[PMR2011]

I was 51 when diagnosed and thank goodness had a good rheumie who did not think I was too young. GP was clueless!

[Blonde61]

Hello

I am 59 and was diagnosed with PMR 6 months ago.

[Hidden]

I started having symptoms at 46 but as I was pre menopausal drs just put it down to that, I'm 50 now and 2 yrs post menopausal and was always told I was to young and it was menopause that was causing it, then finally got diagnosed and put on prednisolone in dec last yr. Got to admit I thought it was age creeping in until it got to the point where I would end up in tears just going to toilet and even having the shower water running on me was so painful, I'd never heard of pmr before and I was a community carer for 20yrs and never came across it

[Pangolin43 in reply to Hidden]

Thank you for your reply Karen. How are you managing now?

[tangocharlie in reply to Hidden]

I do wonder if menopause had anything to do with my PMR coming on as mine coincided. After all, it is basically a total re-wire for your body. At the time I declined HRT as there was a lot of bad press about it causing cancer etc but again who knows, maybe some timely replacement hormones might have helped. I wish we knew more about PMR in younger women, we are invisible as our bodies are 'too complex to study'.

[tangocharlie]

I'd urge you and other newly diagnosed people to become a member of PMRGCAuk and help fight for better diagnosis and treatment, particularly educating doctors, as treatment is a matter of luck depending where you live and how much your doctors know about these relatively rare and baffling diseases

[Casperluv]

Hi yes me! I’m 58 I was diagnosed yesterday after suffering pain in my shoulders and hips. It took me ages to get out of bed some mornings. I’m shocked at diagnosis considering the average age is 70!

[PMRpro Ambassador in reply to Casperluv]

The AVERAGE age is 70, the spread ranges from 50 to 90+! I was 51 when my symptoms started, nearly 57 when diagnosed because too many doctors were fixated on the 70 figure which is almost as much a myth as the 2 year duration.

[spikyPMR]

me - diagnosed at 58 - I too get startled looks from medical professionals …. - and diagnosed as atypical which just increases the surprise - doesn’t really matter as the Pred allowed me to move again.

[Casperluv in reply to spikyPMR]

Thank you

How long does the pred take to work? I started taking on Tuesday this week my hips feel bettter but shoulders still feel sore

[TeabagsOak]

I was 49 and it took me five very painful months to persuade my GP that I had PMR as she was adamant you couldn’t get it under 70!

[tangocharlie in reply to TeabagsOak]

How was it eventually diagnosed? And are you getting treated now?

[TeabagsOak in reply to tangocharlie]

Hi. After 13 telephone consultations where i was given several blood tests ( all normal) prescribed various things… naproxen , hrt, high dose hrt, antidepressants to name a few …. I demanded a referral, which was refused. I then said I can’t get out of bed, I’ve had 13 appointments and nobody has even agreed to see me. She gave me an appointment the next week which in fairness lasted an hour and she had to virtually lift me on to the bed, she checked everything and proudly announced I had PMR ( which I had self diagnosed four months previously)

Within 24hours of taking steroids I was sooo much better. This was 2.5 years ago and I’m still on 4mg( been up and down) and have never seen a rheumatologist and have been left to deal with it myself (thanks to this group!). Hope this helps

[tangocharlie in reply to TeabagsOak]

Glad to hear you eventually got listened to. I hadn't even heard of it before I was eventually diagnosed. Sorry to hear you still have it now but 2.5 years isn't that unusual. My theory is if you get it younger it hits harder - only going by tales of others on here. Still so little is known about PMR but at least we know even if not all the docs know that there is no fixed time to have PMR or age to get it. Glad you find this forum useful, it's been a lifesaver for me

[TeabagsOak in reply to tangocharlie]

Yes, I agree.

I’ve found that sugary, sweet food and lots of carbs makes me worse.

Drinking more water helps.

The rest…. well, who knows!!🤷🏻‍♀️🙄