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

Was your biopsy positive?

Prednisone isn't the only option anymore but it is still the least expensive. There are other options.

Kevzara was FDA approved for PMR on Feb 28th 2023.
https://www.the-rheumatologist.org/article/fda-approves-sarilumab-for-the-treatment-of-adults-with-glucocorticoid-resistant-pmr/
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Actemra was FDA approved for GCA back in May 2017
https://www.fda.gov/news-events/press-announcements/fda-approves-first-drug-specifically-treat-giant-cell-arteritis
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"Several FDA-approved biosimilars to Actemra (tocilizumab) are available for treating Giant Cell Arteritis (GCA). These include AVTOZMA (tocilizumab-anoh) from Celltrion, Tofidence (tocilizumab-bavi) from Biogen, and Tyenne (tocilizumab-aazg) from Fresenius Kabi. All three are indicated for adult patients with GCA."
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Rinvoq was FDA approved for GCA about a month ago!
https://news.abbvie.com/2025-04-29-RINVOQ-R-upadacitinib-Receives-U-S-FDA-Approval-for-Giant-Cell-Arteritis-GCA

Have they tested you lately for inflammation - ESR and CRP?

Have they tested you lately for inflammation - ESR and CRP?

I haven’t posted in a while because I’ve been waiting for something new to report. I finally got an appointment last week with a rheumatologist after calling a couple of times to check on cancellations (wait list). If you’re waiting to see a rheumatologist for the first time, this is VERY important and helpful. I was tactful and polite, but I was persistent. I made sure to confirm with the office staff that I wasn’t being a nuisance. Just being on the wait list often isn’t enough. As the appointment employee told me, “The early bird gets the worm.” I’ve been waiting since June, so this wasn’t too bad. My original new patient appointment was for January 2, 2024.

Results: I now have a diagnosis of PMR and moderate suspicion of GCA. I am on 60 mg. of prednisone preventively until the GCA biopsy is scheduled (very soon, they told me). I feel much better PMR-wise since starting the higher dose of prednisone. My PCP had given me short bursts of 20 mg. but then tapered too quickly, maybe, to 15 mg. and 10 mg., which did little to help. An unexpected benefit: my very arthritic wrists and thumb joints feel much better too. Overall pain level of PMR has gone from 8-10 to 3-4 on a 0-10 scale.

To those discussing fatigue, I had that kind of debilitating fatigue, especially early in the day, with untreated PMR. Once I got to 20 mg. prednisone, it was significantly better. I still hit a wall in late afternoons sometimes, but I’m also already much more active again. I pace myself and try to remember to rest. Not feeling nearly as tired on the temporary 60 mg. dose.

I’m very hopeful again. I’ll let you all know how the biopsy comes out. So far I’m lucky with prednisone, no terrible side effects, sleeping well most nights, feeling able to function again as long as I pair that with enough breaks/rest. I was able to walk moderately briskly 3/10 of a mile last night. A real breakthrough. Before all this, 2 miles a day was nothing. (I’m 69.)Good luck to everyone posting here. I know it’s overwhelming and have been discouraged and overwhelmed for about six months— until now. I found a wonderful, smart, knowledgeable rheumatologist who listens well. Key point. Thank you all— your support and sharing is lifesaving.

I’m in the same boat. Started with PMR, I think, then had the GCA symptoms but no diagnosis. I went for a few months before my Gen practice MD ran tests and found abnormalities in my blood work up but not definite PMR, decided to put me on 15 mg Prednisone and within 24 hours I was feeling somewhat normal. As I was tapering ( now know I went too fast) a couple of months later I got the head pain, jaw stiffness, and visual distortions. My doc put me immediately back to 15. Symptoms disappeared immediately. She didn’t bother to get a biopsy ( covid related) and said my symptoms were enough to treat it as GCA. So, I am quite concerned about the GCA, more than the PMR. I’m slowly tapering, and I mean snail pace. 10 mg now and only going down .5 /3-4 weeks. I too hate the prednisone but feel I have no other options.

@karinaph hi! What kind of abnormalities did they see in your bloodwork? I have tested for Rheumatoid Factor. Have had fibromyalgia for years but Now it’s like I can feel my veins inflamed in my hands in my temples, migraines. Along with other bloodwork abnormal related to this. As I’ve researched I’m thing I have PMR and worried about GCA. Any info/advice is much appreciated!

Yes, my biopsy was positive. They performed the biopsy on the second day I was in the hospital for vision problems associated with the GCA. My vision turned out ok with treatment.

A negative biopsy doesn't necessarily mean you don't have GCA. The biopsy could have been from a section of the artery where there weren't any giant cells, or the biopsy could have been performed after the person had been taking prednisone for some time, and the prednisone caused the giant cells to shrink.

@leloc13 They saw my inflammatory markers in my blood work elevated (sedimentation rate, etc.). Find to a vascular doctor immediately. If you are having GCA it takes only a matter of a short period of time and you can go blind. Doctors opt to do temporal biopsies. I had no idea that it was as invasive as it ended up being. See if the doctor will do an ultrasound or something else if possible. They make an incision on either side of your temple approximately an inch and a half in order to do the biopsy. I don't think I'll ever do that again.