Off Actemra

[Spanky2019]

Ended up in ER with severe stomach pains. Though I have esophagus problems I never had that kind of pain in my stomach. It was gastritis. Rheumatologist said okay to go off Actemra, but not sure if that's the cause. Although Actemra is contraindicated for people with gastrointestinal problems. I'm on only 5 mg prednisone and no GCA or PMR symptoms. Been on Actemra nearly one year. Wondering if I'm at greater risk of GCA coming back by going off Actemra & only doing this low dose prednisone? Do I just wait & see how it goes? Pretty sure Dr would listen if I should do something different. Can't stand the thought of going back to gca or pmr. BTW, I'm finding dry needling done by my physical therapist very helpful for neck & lumbar spine stenosis.

[DorsetLady PMRGCAuk volunteer]

Sounds odd for issues to start so late in the day if it is an effect of Actemra, but not impossible I guess, and probably wisest to stop.

Think you’ll need to wait and see if your dose of steroids is enough, unfortunately that’s not something we can tell you...depends on the state of your illnesses.

Fingers crossed.

[MrsNails]

Oh Spanky, that’s a blow ~ have you spoken to your Rheumatologist?

[Spanky2019 in reply to MrsNails]

Yes, rheumatologist said okay to go off, monitor symptoms and let him or primary know if any gca symptoms. I still see or have video appt with rheumy every 6 to 8 weeks, but I think gca is in remission. I think what pain I have is from neck & back issues. Actually I feel like I'm better every week now. Physical therapy has also been so helpful. I so hope you can get a break. Merry Christmas!

[PMRpro Ambassador]

I suspect that the lack of Actemra may well result in a need for more pred but you can't tell without trying I suppose.