Possible GCA

kdgrotz: Keep pushing for a diagnosis! I have TMJ, so bad at one point I partially blacked out while driving as my face hurt back in the 80's and my head muscles went into spasm due to new mouth guard that I ended up in PT for a month to get my jaws to release and open. This is new for me in the last couple months: Head ache again, cords running down neck starting under the ears go into #10 pain mode and neck pain. Wonder if there is some PMR going on. Can one have PMR after GCA?

Must say doc ordered relief was not expected. Mostly just usually a band aid. Hi back Rocky.

@jeff97 Hi! I am seeing a new ophthalmologist on 2/2/26. I have unconfirmed, uncontrolled RA/PMR/SeroNeg according to my two rheumatologists. I have symptoms of headaches, stabbing pain in eyes (rare and usually during the night). My ESR and CRP levels were in range but over the past 19 months (since I took the shingles shot), have been all over the board.
Question: what was your temporal artery biopsy like? Who did it? A surgeon? Where? Hospital? Was it scary? I didn’t know an ultrasound would be possible. What medication are you on?
Thanks for your help!

@susanlf
I'm glad you're seeing an ophthalmologist soon. He or she can check your eyes for any damage from the GCA. After I was diagnosed with GCA and PMR, I saw an ophthalmologist every 3 months to monitor for problems from the GCA and prednisone. I finished prednisone about 5 months ago, so now I only need to see the ophthalmologist once a year for a regular eye exam.

My biopsy was unusual. I had gone to the emergency room for brief episodes (a few seconds each) of near vision loss in one eye. While I was at the emergency room they ran a lot of tests, and I was tentatively diagnosed with GCA. I was admitted to the hospital for 3 days to receive a daily IV of high dose methylprednisolone. Since I was already in the hospital, the surgeon doing the biopsy decided to put me completely under with general anesthesia. So I don't have any memory of the biopsy. I got the results of the biopsy 4 days later.

I'm like you - I don't know how widespread the use of ultrasound is for diagnosing GCA.

I assume you're taking prednisone now? If so, how long have you been taking it, and what is the dose? If you have a biopsy, it is best to have it within 2 weeks of starting prednisone. But it can still be useful up to 2 months after starting. My biopsy was on the second day after starting treatment.

After I received the 3 infusions of methylprednisolone, I started taking 60 mg per day of prednisone. I was at that dose for 6 weeks, and then started tapering over the next year. I was lucky to see a rheumatologist 4 days after getting out of the hospital. In addition to the prednisone, he wanted me to start taking Actemra. It took 6 weeks to get the Actemra approved by my insurance. I've been taking weekly injections of Actemra for a year and a half now. I took prednisone for about 14 months, but I'm off of it now. My treatment has been very effective. I haven't had any symptoms or flares since I was diagnosed, and I feel better now than I have felt for several years.

I hope you don't have GCA. It's a scary disease, and the treatments, especially high dose prednisone, can be difficult and unpleasant. But like I say, the treatments have been effective for me.

Please let know if you have more questions, and also how things go for you.

Hi Jeff97. Thank you for your quick, comprehensive response. I am thrilled you are feeling better!! You are proof there is hope! My story began on 6/11/24 with a shingles shot. (you may find me whining in other chat sites.) My CPC tested me for RA and started me in Aug 2024, on prednisone which provided
zero pain relief. Due to extreme pain, in the ER Labor Day 2024, I was given methylprednisone, norco, and toradol. Couldn’t see the rheumatologist until 10/31/24. He still can’t tell if I have RA/PMR/SeroNeg and neither can my Mayo rheumatologist. I was weaned off prednisone (thankfully) and proceeded to unsuccessfully take methotrexate, kevzara, and humira. I’m on meloxicam 15 mg which provided pain relief on days 3,4,5 then back to my usual pain levels of 12-14. Unabated For the last 19 months. My bones have been destroyed and I had reverse left shoulder replacement 10 weeks ago. Right shoulder is screaming in pain and will be replaced. Eye pain, headaches, and increased floaters will be addressed when I see my new ophthalmologist on 2/2. I will be asking my rheumatologist on 2/19 ( or sooner by patient portal) to see if Actemra would work for me. I am encouraged by all you have written! Thanks!