GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

Hello @pmm2001, Welcome to Connect. You will notice that we moved your post into an existing discussion on the same topic here:
-- GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica):
https://connect.mayoclinic.org/discussion/temporal-arteritis-1/
You mentioned the scalp sensitivity and jaw pain seem to be increasing while tapering.
@tsc and others with GCA experience may have experience to share with you.

Both my primary care and rheumatologist were always asking me if I had scalp tenderness or pain in the temple area along with other symptoms due to the risk of GCA and the importance of addressing the symptoms. Has your doctor been dismissive about your scalp and jaw pain symptoms? If so, I would press to see a specialist or rheumatologist.

I’ve posted before about PMR, currently on my 3rd bout and down to 2 mg of prednisone. Early last week, I started having significant pain in my jaw and temple, all on my right side. I called my rheumatologist, who ordered labs, which came back “funny” with SED rate elevated and CRP normal. We talked and she set me up with an appointment for biopsy and gave me a script for 40 mg pred. When this started, I was controlling pain with ibuprofen every 4 hours (I figured it was also an anti-inflammatory). Then both rheumatologist and primary care doc went on vacation at the end of last week. In the meantime, the pain began to decrease and I was able to decrease ibuprofen. I did a personal risk assessment and decided not to take the 40 mg, but go ahead with the biopsy, which was much more involved than I thought it would be. Of note is that in November and December, I had 2 major colds or flu or possibly Covid (though I tested negative on home tests). Anyone else have symptoms of GCA which came from colds, flu, Covid. How did you sort it out?

I’ve posted before about PMR, currently on my 3rd bout and down to 2 mg of prednisone. Early last week, I started having significant pain in my jaw and temple, all on my right side. I called my rheumatologist, who ordered labs, which came back “funny” with SED rate elevated and CRP normal. We talked and she set me up with an appointment for biopsy and gave me a script for 40 mg pred. When this started, I was controlling pain with ibuprofen every 4 hours (I figured it was also an anti-inflammatory). Then both rheumatologist and primary care doc went on vacation at the end of last week. In the meantime, the pain began to decrease and I was able to decrease ibuprofen. I did a personal risk assessment and decided not to take the 40 mg, but go ahead with the biopsy, which was much more involved than I thought it would be. Of note is that in November and December, I had 2 major colds or flu or possibly Covid (though I tested negative on home tests). Anyone else have symptoms of GCA which came from colds, flu, Covid. How did you sort it out?

Hi @virginiaj, you mentioned going ahead with the biopsy. Did you get the results yet? When GCA is suspected, a high dosage of prednisone is prescribed, prior to biopsy, because untreated, GCA can result in blindness or stroke. I had a number of odd symptoms that came and went every few weeks a few months before being diagnosed with GCA, including a mild case of shingles, despite having the Shingrex vaccine a year prior. I also had short stabbing pains in the right side of my head and face, very stiff neck, tender scalp, itchy torso, extreme fatigue (anemia) and dry cough. I had PMR previously, undiagnosed, which started about nine months prior to GCA symptoms. My rheumatologist started me on 40 mg Prednisone and my biopsy was positive. I was on prednisone a year for a year and a half, with a slow and consistent taper. I'm off it now. I wish you the best.

I had the biopsy Friday, will know results sometime next week. My rheumatologist was on vacation from Christmas to New Years. She did give me a script for 40 mg prednisone before she left. I am on 3 mg for PMR. I decided not to take the 40 mg until I get the test back. I understand the risk, but symptoms have significantly improved over the last week, my sed rate was elevated, but crp was normal. I also raised my PMR pred from 2-3. The biopsy was more complicated than I thought it would be.

I guess I thought it would be an office procedure. I needed a pre-op and went to a same-day specialty surgery center. I had the type of anesthesia they use for a colonoscopy. I had to fast all day for a 2:30 procedure. My regular opthamologist didn’t do this so was referred to an opthamolic specialty surgeon. (They seemed to do eyelid lifts and other eye related plastic surgery.

I guess I thought it would be an office procedure. I needed a pre-op and went to a same-day specialty surgery center. I had the type of anesthesia they use for a colonoscopy. I had to fast all day for a 2:30 procedure. My regular opthamologist didn’t do this so was referred to an opthamolic specialty surgeon. (They seemed to do eyelid lifts and other eye related plastic surgery.