Tocilizumab and Weakness: What Users Say

• Bec...
• Taken for 1 to 6 months
• August 18, 2019

For Rheumatoid Arthritis "I started Roactemra (tocilizumab brand in the UK) 4 months ago for RA, previously been on Humira and Enbrel, which did not work enough. I also tried methotrexate but can't seem to tolerate it, so then I got Roactemra. Started to work after the 3rd injection and has been working very well to control my RA. However, I now experience a feeling of not getting enough air, get very fatigued and feel weak, also some dizziness and headaches approx 2-3 days after injection. So IDK if I can keep on taking this drug. I'm not even sure if it is Roactemra causing this, but I might have to go off medication to find out, since I can't really function in my daily life - meaning I have no stiffness or joint pain, but can't breathe properly, so I can't enjoy it."

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

For Giant Cell Arteritis "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

For Giant Cell Arteritis "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!"