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Real members of myRAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has Anyone Been On Actemra?

A myRAteam Member asked a question 💭
Old Orchard Beach, ME

Rheumy just started me on Actemra. Xeljanz stopped working 😥
Hard to get used to injections all over again but atleast it's not iv infusions.

August 19, 2019
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A myRAteam Member

@A myRAteam Member.
I'm not on either anymore. taking Remicade infusions that seem to b working quite well. Dont think I ended up trying actemra. Or atleast it did nothing for me

July 16, 2021
A myRAteam Member

Hey! I was on Actemra for a few years and it worked wonders for me -- managed my symptoms seamlessly without adding any side effects (quite unusual with these drugs!). The only downside is that it is quite potent, so if you drink alcohol, I'd advise that you cut back significantly. I ultimately was taken off of it because my liver levels were "borderline" -- however, I had just been living in Scotland and had developed quite a taste for whisky, so I could've had elevated liver levels anyway. Hope that helps - best of luck to you! Oh, and you'll get used to the injections...so much better than the IV!

August 19, 2019
A myRAteam Member

Not me

August 19, 2019
myRAteam

Yes, several patients have been on Actemra (Tocilizumab) for rheumatoid arthritis. Here are some insights from the knowledge base:

- Rabia Peeralia: She tried many other medications, but Actemra was the only drug that made a significant difference for her. After trying a sample of the injectable form, she felt a dramatic Show Full Answer

Yes, several patients have been on Actemra (Tocilizumab) for rheumatoid arthritis. Here are some insights from the knowledge base:

- Rabia Peeralia: She tried many other medications, but Actemra was the only drug that made a significant difference for her. After trying a sample of the injectable form, she felt a dramatic improvement, describing it as "night and day."

- Kelli: She reached out to CreakyJoints to share her story and advocate for change due to the Actemra shortage.

Both patients have experienced challenges due to the current shortage of Actemra, which has affected their treatment plans.

July 23, 2024
A myRAteam Member

Sc, are you still taking xeljanz? If so has it gotten any better for you? I had to stop actemra over a year ago because I started having bad reactions to it after almost 8 years. It worked so well for me… they switched me to Rinvoq but that did nothing except make my hair fall out. Switched over to xeljanz and it’s working somewhat but after 7 mos I’m still not as good as I was with Actemra…I’m so stiff and sore in the morning I feel like I’m 90! Which I’m not… LOL.

July 16, 2021

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