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Working with GCA and Polymyalgia Rheumatica

Posted , 14 users are following.

MKSimpson95
MKSimpson95

I was just diagnosed Monday with both GCA and Polymyalgia Rheumatica on Monday and turned 60 two weeks ago.  Needless to say I am still working full time and will be until retirement age of 67 here in the states.  Can anyone share their experiences working with these conditions and whether they needed to go on disability?  I am really struggling...thank you.  Granted, I am only on meds 3 days and have yet to see Rheumatologist.

0 likes, 28 replies

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  • jill58546
    jill58546 MKSimpson95

    Posted

    I just saw my rheumatoid doctor today for the first time.  Not funny but I also started with symptoms 3 weeks after turning 60 in July. I am a full time employee at a medical office and I still have plenty of years left to work. Since July I have made it though the days hurting bad and have not called off. I am also curious on how the next few years will be. I have been started on prednisone and methotrexate because I am also a diabetic. She is hoping the methotrexate will help the sugar levels not be so high and tapering down might be quicker. I hope you the best.
    • MKSimpson95
      MKSimpson95 jill58546

      Posted

      Hi Jill what dosage did they start you at? I see the Rheumatologist next Wednesday now, so glad they are able to move me up, I cannot imagine waiting 3 months to get in to see her.  My internist upped the prednisone dosage to 60 mg as headache and tinnitus have increased.   Thankfully my arm pain has somewhat reduced.

      Also, when did you start the prednisone?

    • jill58546
      jill58546 MKSimpson95

      Posted

      I was started on 25 but can up to 30 if not all pain is gone.  I can’t imagine what you are going though with both PMR and Giant cell. 

      I kept thinking it was just OA. I did not seek medical attention soon enough. Wish I did. 

    • lynda62707
      lynda62707 jill58546

      Posted

      Hi Jill and welcome to a very informative forum, just wish you didn't need it😕! I take it that since you just saw your doc. today, you are just beginning on prednisone?? I too, am new to this (3mo in) and am 67yrs. I had an amazing quick response to pred. a few hours after taking my 1st dosage of 15mg, I was virtually pain free! Since then, I've had a change of Reuhmatologists, Many horrible side effects and a rollercoaster ride of increasing and decreasing my dosages. I'm currently back up to 16mg (after getting as low as 11.5mg), but apparently doing the drop way to quickly. I hope you feel comfortable with your doc. as personally I think this is of up most importance! It took me 2 tries to find my current reuhmy (some folks more than that!). Unfortunately I'm finding not alot of the medical profession is very educated as far as pmr/gca goes....at least that's been my experience. Best advice I can give is don't try to taper to quickly (even if you're like me and want to get off med. ASAP), expect the unexpected as far as side effects, and maybe most importantly, TRY not to get discouraged! (even tho' you may want to jump off a cliff at times.....just kidding, sorta!).😁

    • jill58546
      jill58546 lynda62707

      Posted

      One my rheumatoid doctor so far. Very understanding. Just can’t seem to have the pain totally gone. 30 and I have to go up again. She said I might be one of the rare that has to be on higher doses to get under control. So I just hang in there. 
    • lynda62707
      lynda62707 jill58546

      Posted

      Hi jill, that's all you CAN do is hang in there! Otherwise you have to let go and I hear the drop is pretty scary! smile

      Please keep us posted and let us know how it's goin!

  • Babazaga
    Babazaga MKSimpson95

    Posted

    I was diagnosed with GCA in July 2017 and took Prednisone for 20 months.  I had various reactions to Predisone in addition to the common effects of weight gain, chipmunk cheeks and difficulty sleeping.  Rheumatologists seem to be reluctant to discuss the more troublesome mental effects.  Possibly from the standpoint of not wanting to have the power of suggestion come into play.  I had to do a lot of my own research to validate the mental issues I was having.  Waking up at 4 am or so, I had terrible images go through my head over which I had no control.  It was quite exhausting and disconcerting as well.  I began to think I was losing my mind.

     Good idea to see a rheumatologist  soon and get as much information as possible and do your own research as well.  You won’t enjoy the Prednisone and will look forward to getting off it, but do not rush,  Really important to reduce very gradually.  We finally went off the medication last December and while I still suffer some linger side effects of the drugs, I’m doing well.

    Good luck to you on your journey.  By the way—-I’m 80 and began at 40mg

    • ptolemy
      ptolemy Babazaga

      Posted

      Quite frankly, I could not have lived without pred for PMR it is one of the best things that has happened to me since I was diagnosed.
  • MKSimpson95
    MKSimpson95

    Posted

    Did everyone diagnosed with GCA have Biopsy or were some diagnosed with PET scans or MRIs?

    Thanks!

    • ptolemy
      ptolemy MKSimpson95

      Posted

      Some are just diagnosed by symptoms and a large amount of pred. It depends how confident the doctor is. 
    • EileenH
      EileenH MKSimpson95

      Posted

      PET scans aren't much use for cranial GCA - the brain takes up a lot of the tracer and so it shows up and drowns the smaller emissions from the arteries. Where it is good is for large vessel vasculitis where the larger arteries in the trunk are affected.

      To some extent the same applies for MRI - if it worked well they'd use it rather than the TAB. With contrast they can find some signs. There is also an ultrasound technique that is as good as/better than the TAB but it isn't as widely available as you have to have someone who has been trained to do it.

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