Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

@dadcue Since neither of us have medical degrees and we certainly have not spent as many years as a Rheumy studying auto-immune problems including PMR and GCA, I'm not willing to say what is or is not the current standard of care for sure. I will say that anyone with GCA is domed to a lifetime of steroids unless and until the standard of care uses something else to control IL-6 inflammation. I 'm thinking that Tocilizumab (Actemra/Tyenne's active biologic) is the standard of care for GCA. I don't "know" but my AI tool also thinks it is, so me and my computer agree. AI Tool - "FDA‑approved specifically for GCA and strongly supported by ACR and EULAR guidance - [aafp.org], [rheumatic....linics.com], [vasculitis...dation.org]"

I have been on Rinvoq since June of last year for GCA. Started with a high dose of prednisone in April when it appeared and down to 1 mg by the end of the first week in January. I am not having any problems with Rinvoq and have not had flares. I’m also in WI.

I was diagnosed with PMR October 2025 after 4 months of life altering shoulder, hip, and right wrist pain. The wrist occurred due to exacerbation of CTS that was underlying. I self diagnosed PMR and my PCP agreed. He started me on 20 mg pred. I wanted the lowest dose possible and self tapered to 10 mg in 5 days with all symptoms resolved. Fast forward, I woke at 3am Jan.14th, 2026 with excruciating bilateral upper/lower jaw pain. I also had (B) TMJ, temple and nuchal line pain and soreness to touch as well as pain when chewing. I advised my PCP and dentist who all thought it was TMJ issues and a lower right molar needed a root canal. I know what TMJ feels like and was convinced there was more to the symptoms. Research showed I had all symptoms of GCA except headaches. Once again, self diagnosed! Dentist put me on amoxicillin tid x 7 days, the root canal was completed and 2 weeks later no symptom change. I asked my PCP if this indicated GCA testing. He saw me that afternoon and increased my pred to 40 mg daily. 95% of my symptoms resolved in 48 hours. I had a transcranial doppler study of my temporal artery yesterday that is positive. My Rheumy still wants the biopsy as it is the gold standard for specific diagnosis and the doppler results can give a false positive reading picking up general atherosclerotic plaque disease. I have the right temporal artery biopsy Monday. I am convinced I have GCA. However, if this helps my Rheumy better guide my treatment, I am for it! I am excited to I have my first appointment with my Rheumy next Thursday; however she has been gracious to consult with my PCP and vascular surgeon prior to my first visit! I have many questions. The German Medical Association has an article regarding the involvement of maxillary arteries in GCA I attached. My SED rate was 12 in October, 2 in January and elevated to 17 Feb.23rd. So far, I have had no adverse effects from the pred, but am looking out for any that may arise.
As we all are experiencing, the american medial community at large, knows little about PMR or GCA. We must be our own advocates!
I totally agree regarding avoiding refined sugar, that should inculde high fructose corn syrup, too. This is hidden in many products- even Ritz crackers! I am vegetarian since 1979. I take in very little refined sugar, eat no fast or processed foods. I have a strength training routine I perform 5 days per week (and have for 20+ years) and 30-40 min of Yoga 3-4 days per week. I have a diagnosis of Graves Disease (hyperthyroidism) since 1993 that has been in remission for 20 years and Raynaud's since a teenager. I do believe that my PMR was triggered by stress in my life that lasted from Feb 2025- Dec 2025. I have found little research regarding this trigger, but have read many forum entries that feel the same way- there must be a connection, at least for some of us!
I pray for everyone of us in this forum that you will have the best outcome. It certainly is a process. God Speed!

OOPs, the wrong article uploaded. The link is: https:/share.google/qS618NAhQuuymdLEp.

@kayept

The link works without the period at the end. Otherwise, as written, it doesn't go anywhere.

Is this the article?
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https://di.aerzteblatt.de/int/archive/article/139297
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The article is a bit outdated in regards to biologicals which is understandable since it was written in 2013.
"Biologicals (evidence level 2, recommendation grade C)
Various biologicals (e.g., anti-TNF-α, anti-CD20, anti-interleukin receptor antibodies) have been investigated in case studies and series. The efficacy of biologicals in GCA cannot, however, be adequately judged on the basis of current data, and they should therefore not be used at present except in clinical studies."
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Ask your rheumatologist about Actemra (tocilizumab) if you are diagnosed with GCA. I think the USA is on par with other countries in advancing new treatments so there is less reliance on Prednisone to treat GCA.

@dadcue
Thank you, dad cue. I will ask my Rheu.y next Thursday!
I appreciate your response!

@gem3850

That is not a good number. Sorry foc!

@dadcue

I’ve been on Actemra for 7 months and no major or minor issues. I still take 1 or 2mg of prednisone also. Goal is to get off prednisone but this low dose does take the edge off type of pain I have. Good luck. 🍀