Who is on Rinvoq for GCA vs Actemra

PMR diagnosis October 1 2025. Started RINVOQ January 1, 2026. Stopped Methotrexate and tapering off prednisone. No problems at all with RINVOQ 15 pill form. Just going navigating approval process for coverage Canada) as it so new.
November 1, 2025 curtain in left eye lower. still there and was pulsed with IV prednisone 1 gram each day for 3 days. Prednisone up to 50mg. No further damage. Doctors said it was good I came in fast. Noticed it night before and in emergency next day.

Goal is to stay on RINVOQ.

@dadcue
I suspect your rheumatologist would be better able to advise you of drug options like RINVOQ taking into consideration your medical history. Worth a discussion and it’s been a lifesaver for me but I have yet to get off it and find total remission ! Good luck and hope you can find answers and relief !

I am on Tyenne weekly injections and am having some issues. My Rheumy suggested I read up on Rinvoq since it may best an option if I continue to have problems. I will follow this thread with interest.

I was diagnosed with GCA in April of 2025. Started tapering off of prednisone after four weeks on 60mg. I began taking one 15 mg tablet of Rinvoq in June 2025 and have had no problem taking it and have not had any flareups. Took my last prednisone tablet on January 6. I saw my rheumatologist yesterday and asked how long I need to take Rinvoq. Her recommendation is to stay on it at least one year from the time you’ve completed prednisone. She also added that another rheumatologist might view this differently.

Thanks so much for this thread! I was diagnosed with PMR/GCA in April 2023 following a sudden onset of severe hip pain. I literally woke up one morning and couldn’t get myself out of bed because the pain was so severe. I had immediate relief with 25 mg of Prednisone and my crazy high CRP & SED Rate went down considerably. The problem for me started as soon as I tried to taper. Pain came back in spades. Currently down to 8 mg of Prednisone with weekly injections of Actemra but I am not pain free. I am wondering if those of you on Rinvoq can share any insight on pain relief? Praying we all get the relief that we need to live happy, productive lives even in retirement! ❤️

@sandiw77

I never had PMR, only GCA. Once I started on prednisone, the my headache and scalp pain went away almost immediately. I have been pain free ever since.

@sandiw77
Your 25mg prednisone starting dose, while maybe OK for PMR, but it’s extremely low for GCA. For my GCA, I started at 60mg, and my understanding is that 50-60 is standard for GCA, unless there is vision involvement, in which case the dose may be considerably higher. My symptoms included pain at base of neck and jaw claudicaton, but not vision.

@sjc123
I started at 60 too, even though I did have vision involvement. Besides the vision problems, I had jaw claudication, PMR, night sweats, persistent low grade fever, facial pain, and tenderness around my ears and on my scalp. Before starting the 60 mg of prednisone I had 3 daily IVs of 1000 mg of methyl-prednisolone. My vision turned out ok. Maybe they started me at 60 because I had already responded well to the 3 IVs.

Began PMR and GCA last OCT with CRP almost 300, confusion, fever, vomiting, severe pain and some blurred vision. Thought I was dying and was hoping to hurry up and get it over with! Begun on 80mg prednisone, tapering down while taking Rinvoq. Grateful to not have any vascular complications and feel so much better. I did, however, have 2 spine compression fractures, Cushings syndrome, significant weight gain with elevated HgA1C, and reactivation of Long Covid. Getting old ain't for sissies. Hoping to be "back to normal" in a year or two. Seeing a Physical Therapist who works with "Pacing" activities. Hang in there everyone.