Newbie under 50 years old

[Purplegirl70]

Hi, I was diagnosed with PMR about 3 weeks ago and have been looking through the posts on here to try and find out more about the condition and the prognosis. According to what I have read online I am younger than the majority of people who have this disease (I'm 47 - hardly a spring chicken) and just wondered how rare it is for someone under 50 to be diagnosed with/develop this disease?

[DorsetLady PMRGCAuk volunteer]

Hi, And welcome,

Yes you are on the younger end of the spectrum for PMR, unusual but not unheard of.

There is quite a lot of info regarding PMR despite it being a little known illness in the outside world.

This is the charity’s Info

pmrgca.co.uk/content/resear...

and this is my take on both PMR/GCA

healthunlocked.com/pmrgcauk...

Both should give you a bit more insight, but please come back with any specific question as and when.

[PMRpro Ambassador]

I think it is a lot more rare to be diagnosed with it than to develop it - and if that sounds crackers it is because I think lot of people under 50 have it but are fobbed off with "your age", "depression", "somatism" (with an underlying hint of "it's all in your head"), "fibromyalgia". None of those respond to pred - PMR does.

So the figures on how many under 50s develop it are skewed - you can't include the people who have it but aren't identified. I was 51 when I first noticed the symptoms - they might have been hanging around before that, I can't remember!

This is a post on another PMRGCA forum with a load of links to reliable reading matter and sites:

patient.info/forums/discuss...

[Marilyn1959]

Hi Purplegirl, hind sight is a wonderful thing. I posted a post a few months ago when I realised that I had probably had PMR for years without realising it and that my diagnosis came a few months ago aged 58 after a significant flare. Thinking back I can pin point the start to age 50. Several members responded saying they too thought they had had the disease for years without knowing it. So agree with PMRpro age related figures are skewed. Pleased you have an early diagnosis so that you can begin your recovery journey. All the best.

[Purplegirl70]

Thank you all for responding. Looking back I have had some of the symptoms for 20+ years but was told it was because of bad posture or hereditary (both myself and my mum have rounded backs). It started getting really bad about a year ago when I noticed I was struggling to climb stairs that had previously not been an issue and currently I struggle to walk more than a few feet at a time. The steroids have helped to an extent, here's hoping the improvements continue. It sounds as though I have been lucky inasmuch as my GP was prepared to diagnose it given my age, albeit the 3rd diagnosis.

[PMRpro Ambassador in reply to Purplegirl70]

I wonder if you also have some myofascial pain syndrome going on - that has confused the issue for me in the past and I had suffered from it from my late 20s. One physio told me it was "bad posture" and my own fault - luckily a more intelligent pain clinic doctor here pointed out we adopt the posture that hurts least! Chicken? Egg?

[Marilyn1959 in reply to Purplegirl70]

You say the steroids have helped to some extent but you are still struggling to walk more than a few feet at a time. Was wondering what dose they put you on? I am also presuming you have been taking steroids since diagnosis three weeks ago?

My Rheumy expected my symptoms to be at least 80% improved in just three days of taking 15mgs a day of pred and they were.

Hence my questions, because I am wondering if your dose is high enough to control the underlying inflammation?

[Purplegirl70 in reply to Marilyn1959]

Hi Marilyn1959, I've been taking 15mg a day since diagnosis. My Dr said last week that my muscles will take longer to regain strength and gave me some exercises to do. Is this common?

[PMRpro Ambassador in reply to Purplegirl70]

I think you probably need a slightly higher dose. By current standards 15mg is quite low - the recommended starting dose now is the lowest effective dose between 12.5 and 25mg/day:

rheumatology.org/Portals/0/...

Recommendation 3.

There is no loss in strength in PMR - that is mentioned in almost all criteria. Once the inflammation is reduced you should be able to move better - unless, as I suggested before, there is something else going on. Myofascial pain syndrome is common alongside PMR and can affect mobility greatly.

[Purplegirl70 in reply to PMRpro]

Thanks. I have a telephone appointment with my GP on Friday so will try and bring the topic up

[Purplegirl70]

Thanks PMRPro I'll have a look into that.

[Dorbor]

Not common but more often than one thinks. Our support group has at least three people under the age of 50 sufferingfromPMR