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4 Years and still not sure if I have PMR.

Posted , 9 users are following.

jenny90481
jenny90481

Hello, Is there anyone that could advise me please. I was diagnosed 4 years ago with PMR and GC even though I had

normal blood results. I was put high dose steroids and my pains disappeared in 3 days.

I have been on a rollercoaster ride ever since. I have had 1500mg iv. and numerous kenalog injections. I have now managed to get down to

2mg. I have now got to the stage that I cannot get up from a chair, cannot turn my head, shoulders ache and feel really down.

Every time I see a different rhuemy and apart from the one who diagnosed me they all think I have not and have never had PMR or GC (GC was diagnosed with ultrasound).

All I know is that I am in really bad pain and stiffness.

I don't know what to believe or do. Should I increase my steroids for relief or just live with this pain?

Also do you think that all the steroids I have taken has done long term damage.

Jenny

1 like, 24 replies

24 Replies

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  • jennifer99312
    jennifer99312 jenny90481

    Posted

    Hi Jenny  I HAVEN'T BEEN IN THE GAME FOR AS LONG AS YOU ONLY 4 MONTHS AND I'M ALREADY DABBLING WITH THE DOSE.   IN MY HUMBLE OPINION WHO CARES WHAT THE UNDERLYING CONDITION IS  CALLED IF THE CORTISONE WORKS AND GIVES YOU QUALITY OF LIFE IT'S WORTH TAKING..  WHAT'S THE POINT OF BEING IN COMPLETE MYSERY AND PAIN IF THERE'S A MAGIC PILL TO HELP.

    EVEN IF IT DOES HAVE SIDE EFFECTS YOU CAN REDUCE IT AT YOUR OWN PACE.  BUT AS I SAY I'M NO EXPERT AND NEWLY DIAGNOSED HOPE YOU FEEL BETTER SOON JENNY

  • judy93591
    judy93591 jenny90481

    Posted

    Jenny, my exact feelings. Why be alive and incapable of even moving!!! 
  • tony92243
    tony92243 jenny90481

    Posted

    Hi Jenny, sorry to hear about your pain and other issues,  I am in a very similar situation to you but no GC , I after nearly 3 years don’t have any definite diagnosis at all. They ‘think ‘it may be PMR or Fibromyalgia etc. I started on 40 mg and tried to reduce by 5 mg every 2 weeks , this didn’t work at all , took 18 months to get down to 3mg with numerous flare ups , tried to stay on 3 mg but pain became to much so have gone backwards up to 7 mg which isn’t to bad so far!. As far as I’m concerned don’t put up with the pain , up the dose to a manageable amount. I understand the body does produce up to 7 mg on its own so don’t think staying on that for me would do any harm?

    Regards,

    Tony.

    • EileenH
      EileenH tony92243

      Posted

      "They ‘think ‘it may be PMR or Fibromyalgia" - then they need to do a bit of homework. If pred helps: IT ISN'T FIBROMYALGIA!!!!!

      Have you got raised inflammatory markers?

    • jenny90481
      jenny90481 EileenH

      Posted

      Hi Eileen. It Jenny again.

      Is there a much of a difference  between PMR and something called Ankylosing spondyitis?    

      I had blood test results today as usual all normal.

      Now my rheumy has said " definitely not PMR" I must not raise my steroid and to have a  MRI scan.

      She really thinks I have Anklosing.    I told her to remember I was positive for GCA and that PMR and GCA are related.  She really got annoyed when I informed her that I raised my steroids.

      real bummer of a day!

      I would be really grateful for you comments on this.

      Jenny x 

      I told her to remember I was positive for GCA and that PMR and GCA are related. 

      So what is she going about.  She didn't have a answer and got really angry when I said I had increased my steroid.  

       

    • EileenH
      EileenH jenny90481

      Posted

      In the early stages of AS it is frequently confused with PMR. AS is a form of inflammatory arthritis which mainly affects the spine but also can cause peripheral symptoms too. I know a few people who were dx'd with GCA or PMR (or both) and in the end it turned out to be AS. For one lady they think it was the AS affecting her neck that had caused the GCA-type symptoms - she had never had a positive TAB. But she happened to mention to one of the top PMR rheumies (who she saw after seeing a host of numpties) that her pain was in the first half of the night, not early morning. It can be confirmed by specific imaging and it responds far better to other medications even though pred does help some. 

      Out of interest: does your pain respond to Naproxen? AS does, PMR doesn't.

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