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Adjusting to life with temporal arteritis

Posted by MLeeB @MLeeB, Mar 21, 2016

Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?

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mark2471 | @mark2471 | 2 days ago
In reply to @mark1952 "@mark2471 Hope you are doing well and looking forward to Thanksgiving! 🦃 I saw a Rheumatologist..." + (show)
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@mark2471
Hope you are doing well and looking forward to Thanksgiving! 🦃

I saw a Rheumatologist for the first time today about my GCA-like symptoms. As we discussed, my ESR and CRP results remain very "low normal." When the Rheumatologist felt of my temples, he said there were no swollen, raised, firm cord-like arteries, which he would have suspected. Did you have these physical symptoms in your temporal arteries? I got the clear impression that he does not think I have GCA or Polymyalgia Rheumatica. He ordered an arterial ultrasound to "rule out" GCA. When I asked him what else might I have if not GCA, he just shook his head and said he didn't know. I guess I was fortunate to get the specialty arterial ultrasound scheduled for December 3rd. He told me to stop the 15 mg of Prednisone. He said, as you did, that 15 mg is a completely ineffective dosage. But he did say that if my symptoms intensify after stopping the Prednisone, to call his office immediately. 🙄 I guess he is pretty confident I don't have GCA because he did not order 40/60 mg of Prednisone for me. I have 🤞🏻 for the ultrasound. Take care.

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@mark1952
Thank you, I continue to be pain free with respect to both PMR/GCA while tapering prednisone, now down to 10 mg. Am looking forward to Thanksgiving, one of my favorite holidays. I am hoping that you do not have GCA and will continue to send prayers your way.
My GCA started suddenly a few days after I completed an 18 month prednisone taper for PMR. I had mild pain and tenderness in both the right temple area and the right temporal artery. I could feel the pulse just in front of my right ear, but it felt just like any other pulse to me. I did not have the jaw claudication also frequently mentioned to occur with this, it’s kind of like a muscle cramp in the temple area with chewing. No swelling in the artery that I could detect, and the US was normal after 2 weeks of treatment, which I expected would be the case since my pains resolved completely within 12 hours of the first dose of prednisone. I did develop painless swelling over the middle of the right eyebrow which is still present. My doctor doesn’t know what this is and is sending me to see another specialist about this next week. Anyway, good luck, and I will keep you posted.

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