Who is on Rinvoq for GCA vs Actemra

I have been taking weekly Actemra injections for a year and a half. I did just a little research into Rinvoq because switching to a pill would be nice. But it looks like Rinvoq has a lot of the same potential risks as Actemra such as liver damage, serious infections, and bowel perforations. Rinvoq also has some heart-associated risks that Actemra doesn't have, including heart attacks, strokes, and blood clots. I smoked when I was younger, plus there is quite a bit of heart disease in my family, so I don't think Rinvoq would be a good fit for me.

Is Rinvoq working for you? Have you tapered off Prednisone?

I'm currently being treated with a monthly infusion of Actemra. I have been off Prednisone for 5 years without any flares. I tried Humira for a couple of months but it didn't work well for me.

I have no personal experience with Rinvoq but I'm happy that someone does have some personal experience. My rheumatologist has said that Rinvoq might be an option for me in the future. I am happy with Actemra but I'm interested in anyone's personal experience with Rinvoq.

I think it is fantastic that there are getting to be more options besides Prednisone to treat PMR/GCA. This forum is light-years ahead of other PMR/GCA forums where everyone is treated with Prednisone.

I was diagnosed with GCA in April 2025 and began taking Rinvoq 15mg daily since mid-June. I’ve been off prednisone since early January 2026. No flares while on Rinvoq and no side effects. Hoping to stop taking the drug by the end of the summer 2026.

@hughebo2

Wow! I’m impressed how well Rinvoq worked for you. Was there any reason for you being started on Rinvoq vs Actemra other than it being a pill instead of an injection?

Just about the time of my diagnosis, I read about the clinical trials with Rinvoq and the fact that it was just hitting the market as the newly designated drug to address GCA. I discussed this option with my rheumatologist and he agreed it would be a good option. My goal was to taper from prednisone asap and this drug enabled me to do that. I was on prednisone from mid-April 2025 until January 1, 2026.

I seem to recall my preference for a daily pill instead of a shot. Taking any of these biologics is a leap of faith as they all have a warning about taking if you’ve had diverticulitis which I had. bout with 10 years ago. The concern is bowel rupture. I’m throwing the dice as I can’t imagine staying on prednisone for the rest of my life.

@dadcue
Hi RINVOQ has been fantastic as I was Atypical with PMR ie little response to Steroids /biologics ! Pain for 5-6months excruciating and debilitating.Diagnosed Jan 24hospitalised a week and steroids commenced . Minimal effect .Tapered off over second half year ceased Nov 24 My rheumatologist managed to obtain on RINVOQ on compassionate grounds (I am in Sydney )
Side effects being my immunity compromised and I’m susceptible to infections ..pneumonia which Ive had a few bouts of.
I also have diverticulitis but seriously had no choice. No issues with that !I’m under a cardiologist for high lipids and family history ex smoker .
Hoping to stop RINVOQ by the end of this year or sooner. Miracle drug as far as it took the pain away !
Good luck and think we will see a lot more of this used .

I couldn't imagine ever being off Prednisone considering my first dose was about 35 years ago. I became a daily Prednisone user after PMR was diagnosed about 20 years ago. I have now been off Prednisone for the last 5 years thanks to a biologic. No more Prednisone tapering for me.

@hughebo2 glad to hear your experience. Please keep us informed. Wishing you great success.

@neenie12

Sounds very promising. I wonder if Rinvoq would work for me?