After 4.5 years of PMR I was diagnosed with GCA September 2023. In late November my insurance approved me for receiving Actemra. I did not receive my first dose till last week, Dec. 14. I felt fine that day. The next day I could hardly get out of bed, felt very bloated and nauseous. After eating toast in the morning to take my meds, I spent the rest of the day and night in bed. I have felt this way for the next 3 days, not being able to eat and nauseous at the thought or sight of food. I am feeling much better here on day 6 since my injection and able to eat a small portion of food without feeling ill and bloated.
I have spoken to both the pharmacy and my Rheumy about these symptoms and the plan is not to take my scheduled injection this week and try again the following week to see if this was due to Actemra or a virus.
Here's the question: Has anyone out there experienced these similar symptoms from this medication and is so, were you not able to take Actemra at all, or did your symptoms dissipate with continued use over time and were able to get the benefits of using it?
Written by
Mooreby
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Hi, I'm not Dr. Grammy, but this is my guess. My guess is you may have had a virus and Actemra just gave it the green light.
I've had GCA for over four years and had weekly injections of Actemra just about the whole time (I'm in the States). I've had no side effects at all. Twice, I've been taken off it by my rheumatologist; once when I had cellulitis and this year with a bowel perforation. My rheumy always stops it for any infection and if I am taking antibiotics, I resume when I am done with the meds. Actemra can make you more likely to "get infections'' or make them worse. To me, the benefits of taking it won~!!
I'm so thankful for Actemra. When it was mentioned to me in 2019, there was some hesitation because I have diverticulitis. I'm so glad I took the leap of faith. Hopefully, it will do for you what it has done for me. I copied this link from the manufacturer's website, but it has lots of interesting info. actemra.com/gca.html
Sorry to hear this,mabey was a virus hope next injection will go well.I never had anything like that taking injections,but now back on Monthly infusion as for me i feel that works better,Rheumy said a few people have olso found this.Good luck xxx
I was on TCZ for 2 years in 2020 & 2021 and I had no ill effects at all. I hope this might just be a coincidence for you and glad you are feeling better.
Let us know what happens when you have the next injection.
Hello Mooreby, I've been on Actemra for nearly 4 years with no ill effects, except neutropenia, which was managed by spreading my jabs to 3 weekly. It has been a game changer for me. I truly hope this nausea is a coincidence and that you find the benefit that so many of us have. Let us know.
I’ve been on weekly injections for 8 months and haven’t had any significant symptoms other than some light headiness. Tolerating pretty well and no longer on Prednisone. Hopefully you have a bit of a virus it’s going around and you can continue Actemra.
Thank you all for your responses and experiences. It gives me hope for getting the benefits of Actemra and it was just s coincidence with a virus that I was experience. I plan to have my second injection this Thursday after taking a week off. Thanks to all and wish me luck!
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