i have just been diagnosed with PMR
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hi all i have just been told i have pmr and put on 15mg a day i am only 42 so it come to a bit of a shock , the pain is so much better now i was just wondering if there are others te same age as me out there
0 likes, 10 replies
EileenH berniboops
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I was 51 when mine started but not diagnosed for 5 years because "too young, normal bloods..." The last person who joined this forum of your age I asked to persuade their doctors to publish something about them, even if it is only a letter to a journal. But I imagine you regard 50+ as pretty old and I'm rather more than that now.
We're a friendly lot - so please feel you can ask questions and make comments.
You will want info I expect - follow this link
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
and you will find a range of links to places with good and reliable info.
Where are you - in the UK or the US? Or somewhere else?
debbie27473 berniboops
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EileenH debbie27473
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That's why I hope the rheumies will publish when they have young patients. There is one report in the literature of a 24 year old male, and a 37 year old was found at pm to have had undiagnosed GCA. We need reports - because we patients know it happens, but the doctors don't believe us. Illness doesn't obey the rules!
debbie27473 EileenH
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On a lighter note, I had to laugh at 'drug seekers'. Who'd want to feel like this, I thought. Then I remembered the effect Pred has on my partner. He gets really high and silly. The first time he was on them he was crawling round the kitchen floor, looking for 'the' squirrel in the cupboard! Sounds funny now but it was a bit scary at the time! I kept asking him if he felt better (he has COPD and had a chest infection) and he said 'No but I don't care now'. Luckily he only has them for a week at a time. (40mgs a day).
EileenH debbie27473
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At least your partner has an inkling of what you go through - he doesn't look ill either does he! At least he is friendly with pred - my granddaughter needs it almsot permanently for asthma and is absolutely awful when on high doses plus the inhalers! And she's a teenager too ;-)
More support groups I suppose would help. Membership of the NE support group - they actively support research. Distribution of info leaflets in practices, education of our own GPs. Participation in trials when offered the chance, replying to questionnaires and things. I'm a patient rep for one of the research groups - earlier, patients were invited to join in discussion providing info about signs/symptoms and so on. I think we're past that at present but there may be more at a later date.
But asking questions on the forums, answering newcomers with what you have learnt or experienced always helps. The doctors are becoming more aware of what goes on on the forums and some of that is percolating through into studies. I participate in all 3 forums - I've heard stories from hundreds of patients over the last 5 years and I have a memory like an elephant! I spend a couple of hours a day every day on my emails!!!!
MrsO-UK_Surrey debbie27473
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tina-uk_cwall berniboops
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larchan berniboops
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berniboops
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Debkimly berniboops
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