I did not have any side effects from the infusions until just recently. I had 6 infusions and then we tested by A1c and Cholesterol and my cholesteral really went up from what it normally is. All other labs have been great. The infusion itself is not stressful at all, the nurses are really helpful and nice and I really appreciate what they do. Bring a book, or watch tv or bring your cell phone and the time goes quickly. I had a video conference with my Dr. this past Friday to adress my cholesterol. Also, I am having a relapse of symptons for my GCA. So my Inital thought is to quit because of relapse and cholesteral issues. I'm just wondering if ACTEMRA is working for me. My Dr. thinks it is because I was down to 10 mg already. My Dr. raised my prednisone up to 20mg but I am still feeling symptons of my GCA so I'm very disappointed. THe dose of ACETMRA was 6mg/kg (400mg/20mL IV solution ) but we are going to raise it up to 8mg/kg (not sure what that calculates out to be for the IV solution). That has me a little nervous because what will that do to my already high cholesteral. I'm going to try it though and see how it goes.
Everyone reacts differently and I've read a lot of positive reviews from people who are doing very well on it so everyone is different. As for how long you are on it I think it depends on how you respond and your doctor. My doctor said I would be on it for at least a year and once off of prednisone a few more months after that. This is the longest journey for sure!! Good luck to you and let me know how it went for you!!!