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GCA

Posted , 8 users are following.

judy93591
judy93591

Eileen, this is to you. You have read of my beginning headaches on right side, down side in front of ear, progressing to blurry vision.  Rheumy couldn't be convinced to try higher dose as blood markers have NEVER been elevated. I had negative arterial biopsy. Low and behold, yesterday appt, guess what, "trial for a week on 40 mg"

My headache went away this AM about 30 min. after med. no change yet in vision. I had return of headache after about 12 hrs. Took Tylenol. Does it take a few days for full relief of headache/vision return?  Thank you for all the help!

0 likes, 7 replies

7 Replies

  • iellen32
    iellen32 judy93591

    Posted

    Inspite of your question goes straight to Eileen, the best person to give the right advice I am posting a reply as an attention to you.

    I hope you get the answer you need and you will.

    Wish you the relief of your symptoms.

    xxx

  • john1717
    john1717 judy93591

    Posted

    I have kept a supply of 10mg and 5 mg tables of pred just incase I start getting GCA symptoms. My rheumatologist told me to immediately take 50  to 60mg pred if the symptoms begin and get myself to an emergency room. I carry the pred everywhere I go.
    • iellen32
      iellen32 john1717

      Posted

      You are lucky for having such a great rheumy!

      It's always better to prevent mostly when our sigh is in danger.

      Take care.

  • Sheilamac_Fife
    Sheilamac_Fife judy93591

    Posted

    Doesn't sound a big enough dose to clear all the inflammation. I too have a stock of 5mg tablets for emergency should GCA symptoms occur. And that would be 60mg initially. 

    Im sure Eileen will be along soon to advise you, or somebody else who has GCA. 

     

    • judy93591
      judy93591 Sheilamac_Fife

      Posted

      Persons with a Rheumy who is so agreeable, are SO LUCKY,  I tend to think in the US the Dr.s aren't very learned in PMR/GCA?  I am happy mine will at least give it a test to see!  I have been VERY FRIGHTENED!
    • iellen32
      iellen32 judy93591

      Posted

      They know about. The thing is they seem to disregard our symptoms. Sometimes the blood test is done after the consultation(!). Then the nurse calls saying if it is normal or high - I never know exactly my current markers though. Now I go for the test some days before the appointment.

      They do the tapering too fast, so at least once s year I have a flare up then it takes a longer time to get the point I was before.

      Today I will see him, the blood test was already done. Hope everything will work better this time.

      If properly treated GCA may be kept under control - the doc and the patient must work together though.

      Stay well.

  • Kdemers
    Kdemers judy93591

    Posted

    Your symptoms are the most important information your dr. Has.  Blood markers  not reliable. CRP only thing up for me.  The vascular surgeon who did my temporal biopsy said he had done 4,000 and only 5 were positive.  Thank goodness dr. Put you on the Prednisone.  I had to go to 60 once, headache scalp jaw so bad.   Be careful tapering.  Good luck.
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