Natalizumab and Pain: What Users Say

• EH1...
• Taken for 1 to 2 years
• July 24, 2015

Natalizumab for Multiple Sclerosis "I am 47 years old. I was diagnosed with MS in March 2013. I was started on Tysabri in August 2014 as I had a relapse while I was on Gilenya in June 2014. The year I was on Tysabri was the most awful year in my life. I had increasing fatigue, on & off weakness in my arms and legs. I had pain in my knees which became severe and progressive in the last 2 months. I have been off work for 2 months now. I only walk inside the house but rarely outside. I had to stay away from all social commitments in the last 2 months."

• Cri...
• Taken for 2 to 5 years
• February 3, 2017

Natalizumab for Multiple Sclerosis "I have been on Tysabri since Jan 2015. Every month, about 7 days before my next infusion, my body is completely ravished with joint pain, pain, and fatigue in my arms and legs. I have a cobweb feeling in my left shoulder blade, and my hands remain numb. I have been forced to go to the ER because the pain was intolerable. A few times I made it to my infusion but couldn't walk, and the pain was so great they had to give me Dilaudid before my infusion. It usually takes 3 days after the infusion for the pain to subside. Every single month I spend 10 days in hell, but I am blessed to get 20 days of normal life. The FDA needs to understand that this drug does not last 28 days, this should be a 21-day cycle, otherwise, people suffer with this drug."

• Bar...
• January 29, 2020

Natalizumab for Multiple Sclerosis "2 days ago I had my 16th Tysabri. Tell you what, my walking has turned to baby steps with a cane, tired, exhausted, especially during hot weather. But I got diagnosed in 2017, and I had no walking issues apart from my right eye that had a patchy feeling. Now I have shoulder pain, left leg experiences momentary seizures, which I am controlling with Tegretol. Doctors are saying that I need to exercise, but I can't as my feet are shivering and are too weak to pedal. Thinking to move to Ocrevus, any idea?"

• Kir...
• Taken for 1 to 2 years
• February 1, 2018

Natalizumab for Multiple Sclerosis "Before my treatment is due, I get so much pain in my shoulders, shoulder blades, arms, and hips/leg. I also become really irritable and have erratic moods. This happens about 1 to 1.5 weeks before it's due. I have been wondering if Tysabri is addictive because it's like my body is screaming for it. According to my MRIs, my lesions are shrinking, so it's doing something in the background. However, I've either gotten worse since being on Tysabri or it's progression. MRIs say stable, go figure."

• eva...
• January 31, 2018

Natalizumab for Multiple Sclerosis "Changing to Ocrevus in 2 weeks after 12 Tysabri's. I had a relapse around the 9th infusion. My blood came back JC positive (was told negative initially), MRI had increased lesion load. Also found it never lasted the 4 weeks. The pain and fatigue came back about 10 days prior to the next dose initially, but that became longer to the extent I was lucky to have a few good days after the dose."

• mur...
• Taken for 6 months to 1 year
• April 10, 2017

For Multiple Sclerosis "I was on Tysabri for 7 months. I think, at first, I would be extremely agitated, tired, and weak. By around month 4, I started getting pain in the top of my right hip. I have never experienced pain so unbelievably intense, if it was even just slightly touched, I would drop to the ground in utter agony. I began to slur my words and became emotionally unstable. Tysabri seems to give me a much larger amount of MS, which is annoying because they told me it had the least side effects and was by far the most effective. Glad to hear it helps other sufferers, though. It's under PBS in Australia, so they would only sting me for $37.50 a treatment."