Actemra and Orencia
I was on Sulfasalazine for my RA for years before it stopped working on me. I was then given Methotrexate which in no time caused me high liver enzymes. I ended up seeing a liver specialist for 3 years. My RA doctor then decided to put me on Orencia in 2020. I had been doing pretty well until a few months ago when I developed bad pain in my hands, specifically in the Metacarpal bones. I am waiting for my hand MRI now. My new RA doctor (I have just relocated to the Bay Area) suggested I consider Actemra since I have been on Orencia for 4 years and it may not be as effective. I did a quick search in our RA community and saw only a few posts on Actemra a couple of years ago. I wonder if anyone has used Orencia and later switched to Actemra. If so, how do they find their RA improvement with Actemra. Do they have good experience with it?
I am also thinking that I may just get a steroid shot for the pain in my metacarpal bones. I can only wish the shots could stop my pain. If so, I may not need to take a stronger medication since they all have serious side effects.
I look forward to hearing some insights. Thank you!
Hi
! I'm so glad you reached out here. I hope our community members with experience on Actemra (especially anyone who switched from Orencia) can share with you. Of course, everyone's experience is different, but it can be so helpful and insightful to hear from others who have personal knowledge of the treatment.
I did find this forum post where a community member wrote about starting Actemra this past July, https://rheumatoidarthritis.net/forums/how-do-i-beat-this-severe-fatigue. And this forum, https://rheumatoidarthritis.net/forums/ra-treatment-with-actemra from March 2023 the community member mentions being on Orencia and switching to Actemra. In both of these cases the poster was still early on in their Actemra treatment, so perhaps if you reached out to them personally they could share how the Actemra ended up being for them.
I'm crossing my fingers that you can get some relief! Please keep us posted with how you're doing and what you decide / find out. Sending you gentle hugs. -- Warmly, Christine (Team Member)
Hi
. I can't personally speak on Actemra, but I can tell you that my wife, Kelly Mack (a contributor here) has had good success with Kevzara, which is the other interleukin-6 inhibitor for RA. Also, there have been numerous studies, such as this one (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5530335/) that have found the IL-6 inhibitors to be superior to the TNF inhibitors. This study was particularly for those who could not continue with methotrexate. Of course, each case is different and what works for one may not for another. Your doctor may be able to provide more insight as to why they chose Actemra. Best, Richard (Team Member)
