Anyone have eye issues with Rinvoq (upadacitinib)?

Posted by bjinman620 @bjinman620, 3 days ago

I have a history of PMR followed by GCA, am on or low dose of prednisone (4 mg) and have had some difficulty with getting off the prednisone. My rheumatologist has prescribed RINVOQ to help with gradually getting off the prednisone. Has anyone else used this to help get off the prednisone? I am a little wary because early on in my diagnosis, I had a retinal bleed, followed by a vitrectomy (to remove the blood) and since then have had occasional flashes in the peripheral area of my eyes. A rare side effect of RINVOQ is retinal detachment which is often preceded by light flashes. Thank you for any experiences you can share.

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

hughebo2 | @hughebo2 | 2 days ago

I have been taking Rinvoq for GCA since June of last year and have had no side effects and no relapses.

scortellino | @scortellino | 2 days ago

I was diagnosed with PMR Sept. 2025. I had GCA episode in April of 2026. While taking the 60 mg of Prednisone my rheum. started me on Rinvoq. So far no side effects and I am down to 10 mg. of Prednisone. I have had some GCA type symptoms but they have gone away after several days. The goal is to get off Prednsione and continue with Rinvoq. Hoping Rinvoq is the answer,

emrose | @emrose | 2 days ago

I was diagnosed with PMR Feb of '25, then GCA October '25, at which time I was put on Actemra. Slowly went down on the pred, but had a flare of GCA in Feb '26. Rheumatologist switched to Rinvoq. The black box warnings are scary.
Just had a flare of PMR a few weeks ago when I got down to 3 mg pred. I thought the Rinvoq was supposed to prevent that. So frustrating!

Colleen Young, Connect Director | @colleenyoung | 2 days ago

Welcome, @bjinman620, I updated the title of your discussion to reflect your question and concern about potential eye and vision side effects of Rinvoq (upadacitinib).

Using the group search, I also found these 2 related discussions that you might appreciate:
- Who is on Rinvoq for GCA vs Actemra? https://connect.mayoclinic.org/discussion/who-is-on-rinvoq-for-gca-vs-actemra/
- Rinvoq for PMR and GCA - What's your experience? https://connect.mayoclinic.org/discussion/rinvoq/

In addition to the helpful posts you've already received from @hughebo2 @emrose and @scortellino, I'm tagging @graydude @proangler12 and @sjc123 to bring them into the discussion.

@bjinman620, it your rheumatolgist aware of your history of having had a retinal bleed and peripheral flashes?

mark2471 | @mark2471 | 2 days ago

I am in a similar situation. PMR started in 2023. GCA at end of prednisone taper in September 2025. Rinvoq started May, 2026 while on about 8 mg prednisone. Now down to 2 mg prednisone. No side effects or relapses (so far).

pmrsuzie | @pmrsuzie | 1 day ago

I would certainly consult with your retina specialist for an opinion. I have a retinal condition - macular dystrophy. Hydroxychloroquine can also affect the retina. The retina dystrophy specialist sent a letter to my rheumatologist stating I should not be prescribed that medicine.