Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Posted by charann2000 @charann2000, Apr 25, 2018

Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Hi, I was diagnosed with GCA last October. I was already on prednisone, down to 9 mg because of PMR.
My rheumatologist bumped me back up to 60 mg and started me on Actemra. I chose to do the once weekly injections at home.
Unfortunately, I had a relapse 3 weeks ago so it was decided to switch to Renvoq, which I should be starting this week. I hope it works!!
Good luck with your treatment.

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Profile picture for hughebo2 @hughebo2

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.

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@hughebo2
Hi, I am about to start Rinvoq. Have you had side effects? My rheumatologist said it is similar to Actemra.

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Profile picture for emrose @emrose

@hughebo2
Hi, I am about to start Rinvoq. Have you had side effects? My rheumatologist said it is similar to Actemra.

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@emrose
If you start Rinvoq ... please let everyone know how it works. These newer medications are helping many people decrease their reliance on Prednisone.

Rinvoq, a once-daily pill. It is a Janus kinase (JAK) inhibitor that works to block certain signals that are thought to cause inflammation.

Actemra is given by a weekly injection under the skin or a monthly IV infusion. It is an IL-6 inhibitor that also blocks inflammation. Actemra is a biologic medication that is expensive. Kevzara is another biologic medication that was FDA approved for PMR.

Both Rinvoq and Actemra are FDA approved treatments for GCA and both will likely help stop the inflammation associated with PMR

The following link contains information about Rinvog. It was FDA approved for GCA in April 2025. There is a risk of certain serious side effects but it doesn't say how much of a risk there is.
https://news.abbvie.com/2025-04-29-RINVOQ-R-upadacitinib-Receives-U-S-FDA-Approval-for-Giant-Cell-Arteritis-GCA).
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I don't have any personal experience with Rinvoq but some people on this forum are being started on it. This forum is great for learning about the experiences that other people have being treated with newer medications for PMR/GCA. Other PMR/GCA forums are dominated with people taking Prednisone who can't seem to taper off Prednisone.

Rinvoq is NOT a "biologic medication" so maybe it won't have the costs associated with biologics

Prednisone also has risks of serious side effects. I was on Prednisone for 12 years until Actemra allowed me to get off Prednisone. I haven't needed any Prednisone in 5 years while only being treated with Actemra. It took me more than a year to get completely off Prednisone after Actemra was started. Comparing my 12 years of Prednisone to my 5 years on Actemra alone -- I'm better off on Actemra.

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Profile picture for emrose @emrose

@hughebo2
Hi, I am about to start Rinvoq. Have you had side effects? My rheumatologist said it is similar to Actemra.

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@emrose

The following discussion might also give you some information.
https://connect.mayoclinic.org/discussion/fda-approves-rinvoq-upadacitinib-for-gca/

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Profile picture for emrose @emrose

@hughebo2
Hi, I am about to start Rinvoq. Have you had side effects? My rheumatologist said it is similar to Actemra.

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@emrose

I have not had any side effects at all. Also, I have been in remission since August of last year.

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Profile picture for hughebo2 @hughebo2

@emrose

I have not had any side effects at all. Also, I have been in remission since August of last year.

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@hughebo2

Are you off Prednisone? If you are -- how long did it take to taper off prednisone? Any issues with your adrenals? I'm thinking of switching from Actemra to Rinvog just because it is a daily pill instead of a monthly infusion. I'm used to doing a monthly infusion of Actemra though. I guess some people get used to Prednisone too.

It was fantastic when I took my last dose of prednisone when some people said I should take it for the rest of my life if I needed to. Fortunately, my adrenals didn't totally shut down and they recovered with time. I didn't need to take Prednisone for the rest of my life.

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Yes, Mike, I am off prednisone. I began taking it in April of last year when I was diagnosed with GCA. Started taking Rinvoq in June as I began my prednisone taper. Took my last mg of prednisone on or about January 6 of this year. Would not want to return to that.

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Profile picture for hughebo2 @hughebo2

Yes, Mike, I am off prednisone. I began taking it in April of last year when I was diagnosed with GCA. Started taking Rinvoq in June as I began my prednisone taper. Took my last mg of prednisone on or about January 6 of this year. Would not want to return to that.

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@hughebo2

Wow! ... I love to read stories like yours. I had a similar response with Actemra but it still took me close to 2 years to get completely off Prednisone. My problem with stopping Prednisone was mostly caused by being on Prednisone for a long time -- 12 years.

I hope Rinvoq continues to work well for you!

REPLY
Profile picture for emrose @emrose

Hi, I was diagnosed with GCA last October. I was already on prednisone, down to 9 mg because of PMR.
My rheumatologist bumped me back up to 60 mg and started me on Actemra. I chose to do the once weekly injections at home.
Unfortunately, I had a relapse 3 weeks ago so it was decided to switch to Renvoq, which I should be starting this week. I hope it works!!
Good luck with your treatment.

Jump to this post

@emrose
Hi. Best of luck with renvoq Let us know how it works. It seems I see a lot more renvoq use. I start Tyenne on Thursday. Tried to get actemra but my insurance company denied. Drug companies and insurance companies rule our world. We just pay 🙂

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Profile picture for elleninz @elleninz

@emrose
Hi. Best of luck with renvoq Let us know how it works. It seems I see a lot more renvoq use. I start Tyenne on Thursday. Tried to get actemra but my insurance company denied. Drug companies and insurance companies rule our world. We just pay 🙂

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@elleninz thank you. And I agree, insurance companies have been given way too much power!

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