Tocilizumab and Swelling: What Users Say

• Tmc...
• Taken for less than 1 month
• November 29, 2019

For Rheumatoid Arthritis "It put me in the hospital for 9 days, 2 weeks after taking the infusion. My lower right leg swelled, and I started having blisters pop up all over, like softball-sized! They finally figured it out, it was a chemical eruption from the Actemra infusion! I could have lost my leg! Worst experience ever! 2 weeks, and I'm still bedridden, cannot walk on it, and blisters are still forming. This medication is nothing to mess around with! Wish I could post a picture with this message!"

• Loo...
• Taken for less than 1 month
• August 17, 2020

For Rheumatoid Arthritis "I did one Actemra injection. After injection, I could not walk straight and was so tired. Thought it was a side effect. Woke up with a swollen face and eyes! Wheezing in my chest. Called my doctor, he said prednisone and Benadryl. It’s been 4 days, and I am still so tired and nauseous."

• Dwe...
• March 3, 2017

For Rheumatoid Arthritis "I took the first dose of Actemra and felt a little dizzy, but that did not last long. My stiffness was reduced, and for the first time in two years, I felt like myself again. The only problem is that my lip was slightly swollen, but it went away in about two days. The medicine lasts for about 4-5 days, then I started having severe pain in my joints, especially my elbows and shoulders. I had to take pain medication, which did not help much. Overall, I love this medication, and I can't wait for my weekly injection."

• DHS...
• Taken for less than 1 month
• November 21, 2019

For Rheumatoid Arthritis "Worst biologic experience yet! This is a weekly injection, and I had severe nausea on this. My rheumatologist thinks it was more of an interaction with this and my methotrexate (although MTX has caused me no issues in the nearly 3 years I’ve been doing those injections). This was like horrible morning sickness all day, every day—I lost 6 lbs the first week I was on Actemra due to nausea. Week 3, I woke up the day I was to do injection #3 (which I do at bedtime), and my face was puffy, my legs were COMPLETELY swollen to the point where it was difficult to bend without discomfort at hip and knees, and my belly was swollen almost to the point of rigidity. My doctor wanted to see me rather than send me to the ER, and it turns out this is a rare side effect. Stopping immediately, and had to go on diuretics to help reduce swelling. The risk of stomach and bowel rupture was a concern since I’ve already had sepsis after an undetected appendix rupture several years ago."

• DHS...
• Taken for less than 1 month
• November 21, 2019

For Rheumatoid Arthritis "Worst biologic experience yet! This is a weekly injection, and I had severe nausea on this. My rheumatologist thinks it was more of an interaction with this and my methotrexate (although MTX has caused me no issues in the nearly 3 years I’ve been doing those injections). This was like horrible morning sickness all day, every day—I lost 6 lbs the first week I was on Actemra due to nausea. Week 3, I woke up the day I was to do injection #3 (which I do at bedtime), and my face was puffy, my legs were COMPLETELY swollen to the point where it was difficult to bend without discomfort at hip and knees, and my belly was swollen almost to the point of rigidity. My doctor wanted to see me rather than send me to the ER, and it turns out this is a rare side effect. Stopping immediately, and had to go on diuretics to help reduce swelling. The risk of stomach and bowel rupture was a concern since I’ve already had sepsis after an undetected appendix rupture several years ago."

• Lhi...
• Taken for 1 to 6 months
• December 2, 2024

For Rheumatoid Arthritis "Newly diagnosed early 2024 with rheumatoid arthritis, interstitial lung disease, Sjogren's, and osteoporosis. I noticed remarkable RA improvement within 24 hrs of first ACTpen injection; no adverse reactions! After one month of amazing weekly ACTpens, I had to switch to monthly infusions due to out-of-pocket cost increases. Infusions did absolutely nothing for me, and after four months of getting increasingly worse, I went back to weekly ACTpen albeit at significant personal expense. Once again, miraculous improvement within 24 hrs. Nearly forgot I had RA at all! Rarely taking Tylenol now and hope to taper off methotrexate and prednisone by the end of year 2024. Additional comment regarding infusions... I cannot fathom why the infusions were SO ineffective. I had to stay on methotrexate, prednisone, and Tylenol during those four months just to struggle in and out of bed and use a walker all day. Pain and inflammation were intense. So thankful for the ACTpens!"

• 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!"