1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

PMR clusters

Posted , 13 users are following.

john1955
john1955

Hi, I have been living with PMR for the last 3 years and am on my second attempt at reaching the Holy Grail i.e. 1mg a day but am self medicating on this occasion. Am experiencing some discomfort at 2.5 but am going to continue on this dosage for some months as it is bearable.  On another matter....has anyone heard of a cluster of PMR sufferers...I live in a rural area and 3 other men (all over 50) not too far from me have been diagnosed with PMR...is this VERY unusual ??

John M

0 likes, 15 replies

15 Replies

  • Handbrake
    Handbrake john1955

    Posted

    Interesting point John, I didn't mention it to anyone at first but it's amazing once you start talking everyone seems to know of someone who has it.
  • tina-uk_cwall
    tina-uk_cwall john1955

    Posted

    Hi john, I haven't heard of clusters but I now live in Cornwall (since 2011), I was diagnosed in December 2013. Through these sites I know of at least 20 other sufferers in Cornwall with pmr and those are just the ones on these forums. Regards, tina
  • jo42444
    jo42444 john1955

    Posted

    I live in Canada 50 mile east of Toronto. I live on a farm in a Rual area. Im 58 and i was diagnosed Dec 2014. I am now down to 3.5 mg. Got down to 2.5 last Nov. Went back to 4 as i experienced a relapse and am weaning a little slower now. My Grand parents were born in Scotland. I like you still have pain but am managing. My dr in the beginning mentioned he thinks it comes in waves. I did meet one person who has it but she was 82 and never got any more pain once she was put on prednisone. So different from my journey. Joanne
    • sheila28713
      sheila28713 jo42444

      Posted

      Hi Joanne,

      I live in Canada as well (Calgary) and also 58. I was diagnosed in September 2013 after 2. Months of symptoms. Both sets of my grandparents are of Scottish descent as welI. No one in my large extended family had auto immune problems that I knew of.

      When diagnosed at 55, the rheumatologist told me I was the youngest she had seen. I am convinced she knows very little about PMR. I dont know anyone else with PMR - just diagnosed myself based on symptoms- as a nurse, I had never heard of it prior to experiencing it. This forum has provided more useful information than anything else.

      I too, have had tenderness just left of centre under my ribs from time to time. Also inner aspect of knees which my rheumy told me was not PMR. So I think Eileen is right that it must

      be MFS along with PMR. I am currently holding steady at 3 mg Pred.

      Sheila

  • ptolemy
    ptolemy john1955

    Posted

    Interestingly enough, PMR clusters were mentioned to me at my first appointment with my rheumatologist. He said nothing had been proved but a cluster effect did seem to happen. My GP said that my village has more than the normal number with PMR as we have quite a high average age. It is an interesting point though.
  • EileenH
    EileenH john1955

    Posted

    Not really unusual - they have noted locality clusters as well as temporal clusters. However - 4 MEN might be unusual. There is usually a ratio of about 2 or 3 women to each male.

    There are also temporal clusters of GCA - they tend to run in multiples of 10 or 20 years. A NASA/ACR study does claim there is a relationship to sunspot activity, new diagnoses peaking a year or so after maxima whilst RA peaks a year or so after minima (I think that's the right way round, there's a thread about it somewhere on the forum).

    Watch that discomfort - if it increases you may need to go back. The excess inflammation may build up, like a dripping tap into a bucket it may eventually overflow and then you have a flare on your hands.

    • john1955
      john1955 EileenH

      Posted

      Thanks for your reply Eileen...the discomfort is mostly in the morning just after rising.  I am going for full bloods at end of month so it will be interesting to see.
  • Flutterbie57
    Flutterbie57 john1955

    Posted

    In mid 2015 I was discussing long term pred/PMR problems with the Chemist. He mentioned that a lot of people around were ' now popping up with the problem' (PMR).
    • EileenH
      EileenH Flutterbie57

      Posted

      I wonder how much has to do with more recently qualified medics being more aware and so are able to diagnose it. That in itself would lead to clusters within a given practice/area with the same rheumy department. And I would be very interested in whether there are fewer fibro diagnoses to balance out the increase in PMR - they have a lot of overlaps and, as I've said before, I'm sure a lot of fibro cases are really something more akin to PMR or MPS.
    • Flutterbie57
      Flutterbie57 EileenH

      Posted

      That was my first thought, that someone in town was now recognising the signs of PMR. My Dr and Chemist did not seem familiar with the problem at first. I was diagnosed by the local Chiropractor I went to. He did say he had referred others to their Drs for tests.

      ​I have had Fibro for nearly 20 years and there are a lot of overlaps. I suspect many people are misdiagnosed. In my case the pain is different. Fibro is an achey type pain which I can relieve to some extent with Chiro/Osteo/Massage, or with excercise and  a massage ball I use to relieve pressure on muscles.

      ​PMR pain came on overnight and was a searing intense pain that I could not relieve with any of the above.

      ​With both conditions my general health suffered for months before real pain appeared. I had fevers, energery levels plummeted, constant sinus and gut problems.

      ​I have however just had about 3 weeks relief from Fibro pain for the first time in 20 years, except for my first few euphoric days on pred. It seeems to good to be true at the moment. I have been going to a French Osteo. His treatment is quite different from anything I have had before.. I am livin in hope.

  • Ouzel
    Ouzel john1955

    Posted

    Northern European descendants mostly; rare in blacks, Asians, etc.   
  • sparklin
    sparklin john1955

    Posted

    Hi John When I first got the dreaded PMR I was about a year into it when my crabby next door neighbour got it and she was convinced that i gave it to her.  No amount of explaining to her that you cannot catch it from other people would convince her that I did not give it to her ha ha
    • sparklin
      sparklin ptolemy

      Posted

      No being crabby comes natural to her ha ha frowntwisted
    • john1955
      john1955 sparklin

      Posted

      I know the feeling.....my brother in law accused me of giving it to him as well....he is having a far worse time than me as he has never been to a specialist rheumy....just went to a general consultant .....
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.