Tocilizumab and Pain: What Users Say

• Mus...
• April 25, 2016

Tocilizumab for Rheumatoid Arthritis "I am 39 years old and have been diagnosed with juvenile RA at the age of 15. Now my diagnosis is seropositive RA. I have been on all existing meds but my problem is that they work for some time and then stop working completely. I had to wait for years to be put on biological therapy. Now, I have been taking Actemra for 1.5 years and it worked I would say between the 4th and 9th month. The last six months I see that it's no longer effective for me. I am again in a lot of pain, and I can't function normally. I said it to my rheumatologist, and she gave me Arcoxia as an NSAID to be taken and maybe cease the pain. It's not helping at all, so she said that we do a switch to another drug. Hope it would work better for me this time."

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

Tocilizumab 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!"

• ALE...
• Taken for 1 to 6 months
• January 2, 2015

Tocilizumab for Juvenile Idiopathic Arthritis "I started on this after failing treatment with two other injectables. At 4 weeks, I felt great! Like I had nothing wrong with me. Now, at three months, I still feel better than before, but I definitely begin having pain for a couple of days before my injection. This is better than any other medication I have been on for this."

• Pet...
• September 16, 2019

For Giant Cell Arteritis "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?"

• She...
• Taken for 1 to 2 years
• January 7, 2018

Tocilizumab for Rheumatoid Arthritis "Helped greatly but still suffered terrible fatigue and pain, along with upset stomach and weight gain."