How old were you when diagnosed with PMR? - PMRGCAuk

PMRGCAuk

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How old were you when diagnosed with PMR?

Polywotsit profile imagePolywotsitPMRGCAuk team member389 Voters

Please select one:

30 Replies
Polywotsit profile image
PolywotsitPMRGCAuk team member

Hi. This is a poll we did about 3 years ago and we'd like to see whether the patterns have changed at all. Thanks for responding!

allykat profile image
allykat in reply to Polywotsit

Hi Kate, still waiting to hear, do you want those with just GCA to respond?

Cheers

Kathryn

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to allykat

Sorry Kathryn!!

There will be a separate poll going up today for people with GCA.

Kate

PMRpro profile image
PMRproAmbassador

This is an incomplete question Kate - it isn't knowing when you were diagnosed that is as important as when the symptoms started. I had had it for over 5 years before being diagnosed - it still keeps me in the 50-59 age bracket. Just.

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to PMRpro

Hi. Yes, people can wait a long time for diagnosis, but the question we are asking is specifically about diagnosis, repeating the question we asked before. Perhaps if there is anyone else like PMRpro whose onset of symptoms would put them in a younger age bracket, you could reply below or send me a private message?

Thanks!

PMRpro profile image
PMRproAmbassador in reply to Polywotsit

Of course - I forgot to mention before that we are a skewed population in any case! Online surveys are notoriously biased - it'll change in about 20+ years but I hope to goodness I don't still need the forum ;-)

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to PMRpro

Definitely! No claims to being scientific! But isn't it interesting to see we have a response from somebody 90 or over. My Dad is nearly 89 and spends most of his waking hours on the computer - so things are changing.

PMRpro profile image
PMRproAmbassador in reply to Polywotsit

On another PMR forum one lady is now in her mid-80s and another is either nearly or over 90 - both very active online.

I do hope they aren't trying to persuade that nonogenarian to get off pred asap as it's bad for them to be on it for long...

Sallyaches profile image
Sallyaches

I am hoping that with awareness that you can have PMR in your 50's you might get diagnosed a bit more promptly. This might not produce scientific data but I would trust it more than my G.P.s sweeping statements that start with 'Generally' or 'in my experience !'

PMRpro profile image
PMRproAmbassador in reply to Sallyaches

To which I suppose the response is "And exactly HOW many patients with ... have you managed?"

mlizscott profile image
mlizscott

I was diagnosed with pmr/ gca at 66 but looking back I can see that I certainly was suffering with pmr for several years before the diagnoses.

lillegirl profile image
lillegirl

I was diagnosed PMR/GCA at 63, but can actually think of PMR symptoms that surfaced at least 3 yrs before!

lillegirl profile image
lillegirl

Although this is a good poll to have, it will not be a true reflection of those over a certain age that are possibly not as computer literate as others, and therefore do not use IT, or use the forum.

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply to lillegirl

You're right. It only tells us about the people using the forum. But that in itself is worth knowing. It is not meant to be a representative survey.

gailmax profile image
gailmax

Very Interesting.

HeronNS profile image
HeronNS

Diagnosed at 68 after more than a year of serious symptoms and repeated trips to the doctor.

allykat profile image
allykat

What about those of us who only have GCA? Do you want us to respond or will you be doing a separate poll?

NursePeggy profile image
NursePeggy

i had symptoms for about 4 months. Every time I went to the doc I was told it was a virus. Eventually I was talking to a friend one day and she said it sounds just like PMR. I had never heard of it before. I looked it up, went to a different doc, told him my symptoms and asked for a blood test. When the results came he diagnosed PMR !

bowler profile image
bowler

was diagnosed at age 54 with GCA but I had PMR symptoms a couple of years prior to that.

Rose54 profile image
Rose54

Hi

I self diagnosed age 61 however for 4 years previously GP diagnosed CFS finally agreed with me started on Preds and within 4 hours like a new woman.

Rose

Greensleeves profile image
Greensleeves

Interesting how the 50-59 age bracket has grown Kate.

I'd like to also see a 'what month ' of the year were people diagnosed poll.

So many seem to begin symptoms from September to the Winter months.

In the 4th year now and the PMR is still active.

xx

kulina profile image
kulina in reply to Greensleeves

I agree Greensleeves, that would be an interesting survey.

lesley2015 profile image
lesley2015

56 years old.

Zany profile image
Zany

Symptoms began in December diagnosed end of March, at 67

Zany profile image
Zany in reply to Zany

2015

magmapearl3 profile image
magmapearl3

63

magmapearl3 profile image
magmapearl3

63

Rimmy profile image
Rimmy

I hadn't seen this since I joined the forum and think it worth 'reviving' this thread for others to participate. Agree can't regard as 'scientific' and it doesn't tell us how many years prior to diagnosis we may have had PMR - but it certainly highlights (so far anyway ) that this is NOT (necessarily) a 'disease of old age' - but often (especially given long prior periods without or incorrect diagnosis) of 'middle age' .

Rimmy profile image
Rimmy

Oh dear I see the 'GCA' poll put up at around the same time as the PMR poll about a year ago was also a bit messy as many seemed to confuse it with the PMR one - but nevertheless there is potential for some of this kind of 'raw research' to be conducted here and on similar forums as 'results' may be interesting - but just can't be regarded as 'gospel'.

AussieKid profile image
AussieKid

I should be in the 60-69 bracket