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Finally a diagnosis

Posted , 9 users are following.

Bert5560
Bert5560

I haven't been on this PMR website for a long time. But it has taken a PCP, Endocrinologist, ' Orthopaedics, Nueurologist and finally a new Rheumatologist to give me a diagnosis of PMR. I've had X-rays , numerous blood tests and of course an mri of my torn rotator cuff to come to this conclusion! The torn rotator cuff was what started the whole stiff painful body aches. My rheumatologist said that it wasn't unusual for something like the cuff tear to trigger it, I am on only 10 mgs of prednisone right now and it has helped. Instead of my usual dancing type aroebics I now do a stretch type exercise that I bought on DVDs. It seems to help , I hope I continue to feel better. I wish the same to the rest of you who have this painful condition!

0 likes, 8 replies

8 Replies

  • Bert5560
    Bert5560

    Posted

    I meant aerobics!
  • Anhaga
    Anhaga Bert5560

    Posted

    Glad you are doing well.  Similar in my case - broken leg the trigger (probably on top of all the other stresses in my life at the time).  I'm at 9 reducing to 8, and my own program involves as much stress avoidance as possible along with the mandatory gentle exercise, healthy diet and rest.  I'm lucky I can live this way just now, and I am beginning to understand that I haven't been this fortunate since University days a lifetime ago.
  • Danrower
    Danrower Bert5560

    Posted

    Same here Bert

    @ 53 years old (12 years ago), fully torn rotator cuff precipitates  PMR , never diagnosed, and orthos did both shoulders and a knee to operate me out of PMR. Only one shoulder needed to be done. When in there, he said, gosh, a lot of inflammation!

    PMR went into remission as I healed from the surgeries.

    12 years later, @ 64 years old, surprise divorce,  8 weeks later, Bam, full blown PMR. After 8 weeks of misdiagnosis, Started on pred.

    I postulate that VERY frequently, PMR is precipitated by physical or mental stress. I have had both awaken the beast, 12 years apart.

    Consequently, I avoid major stress makers.....like marriagelol.

    Good luck Bert.

  • IssyR
    IssyR Bert5560

    Posted

    Hi,

    Reading your comments it sounds like there was an 'event' that triggered the PMR...i didn't know this...i had pneumonia 3mnths before this all started, i'd had to have a rib resected so as they had access to clear out an empyema so quite a big op...would that be a trigger?? I've been on pred since Sept '14, i've managed down to 7mgs pred but when i've tried to go to 6mg i am in a lot of pain...7mg i'm a bit achey but manageable. My doctor has never mentioned referring me to anyone and only just prescribed alendronic acid last week. He's never tested my blood sugar or BP it worries me a bit after reading a lot of the posts on here. I live in Scotland so it's the GP (General practitioner) i see and just worry he might be a bit too general....anyway glad you finally got a diagnosis xxxx

    • FlipDover_Aust
      FlipDover_Aust IssyR

      Posted

      It seems quite common that an 'event' (or series of events) triggers PMR - I had 8 weeks of bronchitis and some huge family stresses prior to getting PMR diagnosis. There is also some speculation that there is a genetic component (although not that I know of in my case). there also seems to be a 'personality type'... the busy, active people.
    • EileenH
      EileenH IssyR

      Posted

      First of all - it is perfectly normal in the UK in general for PMR to be diagnosed and managed by a GP - however, when they have a patient on long term steroids they are supposed to do blood tests every 6 months or so and any GP who doesn't check BP on any patient probably isn't following best practice guidelines and particularly when you are on pred. If a patient suspected to have PMR does not respond in the expected way to 15mg/day of pred,  or is particularly young/has normal blood tests but suspicious symptoms then they should be referred to a specialist. This should also happen if GCA is suspected. 

      You should have been sent for a dexascan before being handed alendronic acid - since the downsides of it are now beginning to be appreciated and it should only be given for a maximum of 5 years - I didn't need it at the start, after 3 years on pred at above 10mg most of the time my dexascan readings hadn't changed. Obviously I didn't need it - I'd only taken 4 tablets before questioning it.

      I imagine that even in the UK a pharmacy can check your BP for you and probably get a better reading than when you are a bit uptight at the surgery!

      As for the triggers - PMR is a disorder of the immune system where it goes into overdrive, being unable to recognise your own body as "self" and so it attacks it by mistake, damaging tissues and causing the inflammation which leads to pain and stiffness. Stress is well known to have an effect on the immune system and it doesn't matter whether it is mental or physical stress and physical stress can be due to injury or infection and also overdoing things.

      There isn't one thing that can be identified - it is known that people with Scandinavian genes have a higher rate of developing PMR and it is very unusual in black populations - though NOT unknown. Busy active people do seem to be badly affected - but is that because we notice it more when we are prevented from our normal way of life? But in the end an event of some sort overloads the immune system and causes it to crash - it doesn't have to be PMR, there are all sorts of autoimmune disorders and which label you get depends on the symptoms you display. Rheumatoid arthritis, lupus and Type 1 diabetes are all autoimmune disorders that you will recognise the names of - but there are a lot. 

    • EileenH
      EileenH IssyR

      Posted

      PS - where in Scotland are you? Did you know there is a very active support network in Scotland?
  • pauline36422
    pauline36422 Bert5560

    Posted

    yes bert it was shock. i blame for my  pmr  nearly 4 years  back.   it also took  18 months before i was eventually  given the correct  diagnosis.   and it was ay my neices  suggestion who is a gp in another part of the  country.  when i was telling her of all my probs, that when she said it sounds like pmr.    so on my next  gp visit i mentioned it to him.  he then said ok we will try you on steriods.  and that was it.   so now 4 years on still struggling,  with the pain,  tho i am dowm to 4.5  of steroids  and the help  with  bowens  the pain is almost gone 
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