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Was anyone referred to Endocrinology?

Posted , 4 users are following.

pat38625
pat38625

Just got diagnosed last month with PMR and am on 20mg pred.  I have appointment on 8th January at Endocrinology.  Has anyone else been referred and if so how did they get on.  Would appreciate any comments/answers.

1 like, 9 replies

9 Replies

  • EileenH
    EileenH pat38625

    Posted

    PMR is usually a rheumatology question - the only people I know who have been referrred to endocrinology were sent towards the later stages of their pred reductions if they had problems with adrenal function. But that isn't likely to be a problem at this stage so I do wonder if your doctor has other suspicions. I will be interested to hear the result though.
    • pat38625
      pat38625 EileenH

      Posted

      Thanks Eileen I will keep you up to date after I have been seen at Endo.  I have attended Endo for about 10 years off and on (re: mysterious weight gain, thin skin) have had every blood test going and cortisol measurement in urine 24 and 48 hour samples many times and everything showed up normal.  In the end, was just discharged June this year Dr. said it's just a mystery and I did appreciate her honesty.  So this time it will be interesting.
    • EileenH
      EileenH pat38625

      Posted

      I wonder if it was unidentified autoimmune problems that have finally crystalised into something like PMR? Did the 20mg pred achieve a dramatic result?

      I had had "something" for about 15 years - fatigue and other non-specific things. HRT helped although there was no evidence of anything bizarre with hormones. The PMR appeared shortly after I decided to stop the HRT (bad move that). With autoimmune stuff though there are losts of cross-over symptoms. There is a consultant in the NE of England who treats all his ME/chronic fatigue syndrome patients as if they are hypothyroid even though their blood results don't show anything wrong. But they do far better as a result.

    • pat38625
      pat38625 EileenH

      Posted

      The 20mg pred was like a miracle magic pill.  Within a couple of hours and then a couple of days I was starting to feel normal.  I was diagnosed 14 years ago with ME but have never experienced pain like I have with untreated PMR.  My thyroid has always shown normal and this one size fits all drives me round the bend.  
    • EileenH
      EileenH pat38625

      Posted

      Me too - since an awful lot of doctors adopt that mantra with PMR and IT DOESN'T WORK!!!!!!!!!

      Yes - that sounds like me and pred - 15mg and 6 hours later I got up from the computer and walked downstairs normally! When I had the ?ME I didn't have pain - I just felt AWFUL! Not sure which was worse though!

  • tina-uk_cwall
    tina-uk_cwall pat38625

    Posted

    Hello pat, sorry to hear of your diagnosis. As Eileen has said in England we tend to be referred to a rheumatologist regarding PMR. Get the the web and research this condition, it's not terminal but it can sometimes be a real pain the the neck- literally! Then when you next see your GP perhaps they can refer you to a rheumatologist too. The research will ensure that you are better informed re your treatment plan. It appears that not just in England but the world over PMR treatment and recovery plans can be a bit hit or miss. Look up the Bristol plan, that is regarded as the best along with the plan that Eileen has created, many of us attempt to stick to that one. Slowly but surely, that is definitely the way forward. Good luck pat. Regards, christina 
    • pat38625
      pat38625 tina-uk_cwall

      Posted

      Thanks Christina, I have done a lot of research and this site has been a God send to me and reading about peoples experiences has armed me already.  I don't care what drs say, I will be managing my pred as and when they start to reduce it.  I know for sure I am not going back to the type of pain I experienced.  My ESR was 124 and CRP was 46.7 back in November, it is greatly reduced now.  Will look up the Briston plan.  Thanks again.
  • 3party
    3party pat38625

    Posted

    I agree with EileenH.  I would add only this: I live in the U.S., where the standard of medical care is poor, unless you are very lucky.  My GP prescribed Prednisone eventually, and that is where I am now - dependent on them.  BUT the one truly superb physician I deal with around here is an endicronologist, a world-renowned guy who just happened to want to live on the Oregon coast.  I saw him recently about other things, and specifically asked him about PMR and whether he had any insights.  He was very clear that PMR itself does not involve hormones, and he thought he had nothing to add to the very little the GP had said.  Thus, unless your doctor is completely off-target (which seems unlikely), s/he suspects something else going on.  Every had your thyroid tested?
    • pat38625
      pat38625 3party

      Posted

      Thank you for replying.  My first appointment is next Thursday at Endocrinology.  I was discharged in June after attending Endo for 10 years.  Gaining weight, skin thinning, hair thinning, no appetite and every blood test and cortisol test came back normal.  My thyroid has been checked maybe 5 to 6 times a year and it's slap bang in the middle/normal range.  But it will be interesting next week when I go.  Thanks again
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