Tocilizumab for Giant Cell Arteritis User Reviews

• Bob...
• Taken for 6 months to 1 year
• October 13, 2022

Tocilizumab "I’ve been on the Actemra for eight months now. It very effectively lowers my CRP and ESR. I stopped using Actemra for 30 days due to a different medical problem. Blood tests showed my inflammation markers rose dramatically when I was off of Actemra. As soon as I started this medication again, my inflammation markers dropped significantly. I plan to stay on this medication for as long as necessary. I want to protect the remaining vision I have in my eye and will not let GCA take that away from me. The only side effect that I have noticed for the medication is a reduced level of platelets in my blood tests. The level is low but not dangerously so."

• Unh...
• Taken for 1 to 6 months
• August 2, 2021

Tocilizumab "If you enjoy being tired all the time, this is for you. If you find yourself confused basically all the time, you might be taking Actemra. I hope it is working because it is ruining my life one injection at a time."

• Sal...
• Taken for 6 months to 1 year
• November 29, 2021

Tocilizumab "Went blind in one eye 3 years ago and have been on prednisone since. Every time my doctor tried to lower it, I had relapses. It was time to try and get off it. We turned to Actemra with a specialist. I have been on it for 8 months. Went off it 3 weeks ago with my regular doctor’s permission. Worse drug I have ever been on. The blood work always showed at dangerous levels (liver panel, blood pressure, glucose levels, cholesterol, etc.), never had these problems just being on prednisone alone. It got so bad that I slept all day, had deep depression and no motivation, and continuous UTIs. It will take about 4 months for it to get out of my system. I am still on prednisone. I can live with that, but never, never Actemra again."

• gai...
• Taken for 6 months to 1 year
• July 27, 2023

Tocilizumab "Been on Actemra for about 6 months for GCA. While tapering off Prednisone. Gone from 80 mg to now a year later to 6 mg of Prednisone. I am permanently half-blind in one eye from GCA. The Prednisone was a horrible experience for me. It broke me down so bad, I was so weak I could barely walk. I'm 68 yrs old. I couldn't even get in and out of bed by myself. It has been a long road but I am much better now. I don't think I'll ever get back to the way I was before GCA, but I'm way better than when I was on a high dose of Prednisone. Actemra hasn't caused any side effects except maybe a little bit on my liver. I had EVERY bad side effect with the Prednisone x10. So I guess different drugs affect everyone differently. I am grateful for Actemra. Hope this helps anyone considering this drug."

• Pie...
• Taken for 1 to 6 months
• November 29, 2023

Tocilizumab "I'm a 76-year-old male diagnosed with GCA in May 2023. I was immediately hospitalized with high steroid doses, which halted the progression of the disease. I was discharged from the hospital with steroid tablets, and then my rheumatologist started monthly Actemra infusions. I was able to wean off steroids completely in early November 2023. I experienced very minor side effects with Actemra, including some swelling of the ankles, a puffy face, and occasional tiredness. I'm not sure if these symptoms are from the disease or Actemra. I'm an active runner and cyclist and I eat a healthy diet. I have noticed a slight difficulty in exercising, but I push through it. My rheumatologist plans to continue monthly Actemra infusions for one year and then assess whether to reduce the dosage, discontinue the infusions completely, or continue them. He mentioned that the optic nerve, once damaged, will not improve. Currently, my vision is 20/25 in the left eye and 20/20 in the right eye, but it fluctuates daily. The doctor's goal was to get me off steroids due to their side effects, and Actemra has been used as a safe drug for many years."

• Pre...
• July 10, 2021

Tocilizumab "I have been on Actemra for close to a year. After weekly injections, I break out in a huge, itchy red lump approximately the size of 3 inches long and 1.5 inches high. By the following week, the redness goes away. I use skeeter off for itching and CBD cream for healing, covering with Saran wrap. So far, the combination works. It is very uncomfortable, and I truly don't like the injection. I’m 83 years old, and this is my future."

• Joa...
• Taken for 1 to 2 years
• October 25, 2024

Tocilizumab "At age 70, I had emergency surgery at Stanford due to my aortic tissue being dissolved due to Giant Cell Arteritis in Feb '22. I was prescribed Actemra weekly for the 1st year and now every other week for this past year. I did not have any issues the first year, but when the injections were discontinued, I had aches in my jaw, temple, and shoulders. My Actemra/Tyenne injections were restarted and given every other week, and that is working for me so far (8 months in). Sometimes I have intermittent aches in those areas, but they don't last more than a day. I am physically active, walking 3 to 6 miles most days, which I hope helps my overall health. And, most importantly for me, GCA has not affected my vision, and I still do not need glasses."

• Pet...
• September 16, 2019

"Been on tocilizumab for 2 months, it has helped me a lot, but for the last 2 weeks, I have had severe back pain, leg pain, and stomach pain, and even the painkillers are not relieving the pain. I am in pain every day. Is anyone else experiencing this side effect?"

• Ano...
• Taken for 1 to 6 months
• April 7, 2025

Tocilizumab "I started on high doses of prednisone, 100 mg, after going half blind in my left eye on 6/24! Weaned down to 60 mg and started on Actemra on 9/24! Weaned off prednisone in 6 mos. on 2/25! Now, after 6 mos. of Actemra, having swelling in my ankles and feet with weakness and stiffness! My experience so far is terrible!"

• Ano...
• Taken for 1 to 6 months
• April 7, 2025

Tocilizumab "I started on high doses of prednisone, 100 mg, after going half blind in my left eye on 6/24! Weaned down to 60 mg and started on Actemra on 9/24! Weaned off prednisone in 6 months on 2/25! Now, after 6 months of Actemra, having swelling in my ankles and feet with weakness and stiffness! My experience so far is terrible!"

• Way...
• Taken for less than 1 month
• March 5, 2019

Tocilizumab "Actemra works well. No side effects recognized. Blood work back to normal after the first dose. Eliminated GCA (giant cell arteritis) headache."

• Sal...
• Taken for 6 months to 1 year
• December 19, 2019

Tocilizumab "I have been on Actemra for 11 months, and so far, I have been doing very well - no GCA symptoms have reoccurred, and my blood work has been excellent."