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i have just been diagnosed with PMR

Posted , 8 users are following.

berniboops
berniboops

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

10 Replies

  • EileenH
    EileenH berniboops

    Posted

    There are a couple but you are right in thinking you are a rare breed. Not least I suspect because many rheumies refuse to consider it in anyone under 50 - and some set the bar at 60!

    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
    debbie27473 berniboops

    Posted

    Hi Bernie. I was 54 when I was diagnosed and they told me I was very young to have it but I know we have a couple of people on the forum who are around your age. It seems to me that as time goes on, younger age groups are developing this disease. Makes you wonder why? Good luck with your progress through this and keep in touch with the forum. It really is a lifeline, with always someone to listen and advise when you are having a bad day and on the good days its nice to be able to share your experience with and help the others to hopefully feel better. Take care. Debbie
    • EileenH
      EileenH debbie27473

      Posted

      I think there are plenty of people out there with PMR in their 40s - but with labels of fibromyalgia, depression, "hysteria" and even "drug seekers".

      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
      debbie27473 EileenH

      Posted

      Hi. Does the fact that we use this forum help at all? Is there anything else any of us could be doing? I'd love to help with anything that could stop patients going through what many of us have!

      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
      EileenH debbie27473

      Posted

      In the US they often label fibro patients as "drug seekers" - anything that has no definite diagnostic test and hurts basically means they suspect they're looking for narcotic pain killers. Not that they do anything in PMR...

      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
      MrsO-UK_Surrey debbie27473

      Posted

      Debbie, as you live in Devon, are you anywhere near the support groups that meet in the Plymouth and South Devon areas?  A very active one meets in Taunton and I'm sure they would be only too pleased for any offers of help.  I can send you further details by PM if necessary.
  • tina-uk_cwall
    tina-uk_cwall berniboops

    Posted

    Hello there, what a bummer! Nope I can't match that. I was 52 and even then I thought I'd been dealt a bad hand! You are on medication now and say that you are feeling so much better so that's great. This forum is great as you probably have worked out that very little is known about this condition and that includes the specialists and drs who care for us? Hopefully you will have researched this condition and appreciate that you will be with us for the long haul, but of course we all look forward to the day that this wretched condition burns itself out and we will be free from the medication. Look up the Bristol PMR plan and that will give you a little idea of how your treatment regime should be staged. Drs tend yo want us off the prednisolone but until then find a cure or come up with a better medication, preds just have to do wether we or the drs like it. Remember the medication must fit the inflamation and not the inflamation fit the meds. Hope to read all your experiences etc. good luck Berni (are you a female, only asking because my brother was called Berni but I do know it's also a female name). Regards, christina 
  • larchan
    larchan berniboops

    Posted

    Hi Bernie- I was 49 and wasn't that surprised because I had been in 3 car accidents and had 5 major surgeries and kind of believed as my GP suggested that all of this physical trauma may have been my trigger for PMR. My GP and I are learning about it all together. I brought him some info I got from EileenH the day before yesterday when I was in to see him for remnants of the flu- the flu not covered this year by the shot. I have in 9 years yet to see a Rhuematologist because my GP has a close friend who is one and I feel comfortable with them discussing my case and keeping it all in one file, as it were. I am no lonbger on Prednisone and do still have debilitating pain but just prefer living med free as much as possible although I do take a 6 week course when I flare. We all have our own ways of dealing with chronic pain and no one is wrong or right with what they choose for themselves. I wish you peace and comfort as you adjust to your new standard of living- the girls here are encouraging and can answer your questions as you go along.
  • berniboops
    berniboops

    Posted

    ty all so much for the warm and very helpful welcome i am still trying to get my head around it all
  • Debkimly
    Debkimly berniboops

    Posted

    I would suggest having your GP get you in to see a rheumatologist. I was first told I have PMR but actually have severe RA.
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