Tysabri and Fatigue: What Users Say

• Lai...
• Taken for 5 to 10 years
• January 6, 2016

For Multiple Sclerosis "I was first diagnosed with MS in 2006. I have tried Rebif, Betaseron, Copaxone, Avonex & lastly Cytoxan (which is chemo). I am now 47. I have been on Tysabri for 6 years. Tysabri has quite literally saved my life. My peripheral vision is gone due to prior MS flares, but my flares are non-existent now. Since I have been on the drug for so long, my greatest side effect of infusion seems to be fatigue for a day or 2 after infusion. During infusion, I am also given IV Benadryl & anti-nausea medication. My MRI's have come back clean... no demyelination. If previous MRI's and spinal taps did not show positive proof of disease, I would like to believe I was cured. I do have neuropathy. I don't walk as fast as most, and I jumble words. I am JC NEG."

• Cin...
• Taken for 1 to 2 years
• January 24, 2019

For Multiple Sclerosis "I have had MS for 20 years. I have been on every medication around. About 10 years ago, I started having some movement issues, but nothing noticeable. In November 2017, I felt I was getting worse walking. I went on Tysabri. At that time, I was not using a cane, but I was getting fatigued easily and noticed my walking was getting worse. After a year and two months on Tysabri, I am much worse. I use my cane full time, I get fatigued easily and have seen no benefit from Tysabri, only negatives. My MRI came back with no new lesions, but I didn't have any new lesions the past few years anyway. I am going off this medication and will just work on my diet and exercise for now. I can't afford to get any worse or I will be in a scooter."

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

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."

• Ang...
• February 26, 2016

For Multiple Sclerosis "I was diagnosed in 2004 with RRMS. After several tries with meds, Tysabri was the best. I have been on it now since 2008. MRI comes back, no progression, lesions seem to be shrinking. I love Tysabri, it does, however, make me more fatigued for up to two days after infusion and for the week prior to infusion."

• Msm...
• Taken for 1 to 6 months
• November 14, 2016

For Multiple Sclerosis "I am 19 years old. I was diagnosed with RRMS at the age of 15 in 2012. I started out on Rebif injections. I was on that for 6 months and had to stop due to anaphylactic shock. I had 3-4 flares and had to be treated with steroids. After that, I started Copaxone and had 3-4 flares that caused a lot of damage. I took this medication for 6 months and went into anaphylactic shock. In June, I started Tysabri. It took 6 months of fighting with my insurance to cover it. In the meantime, I tested positive for JC virus. I had my 6th infusion on November 10, 2016. I can't emphasize and exaggerate enough how terrible I feel. I can barely move. I have severe chest pain and tightness. I'm so fatigued, I can't stay awake for more than a couple of hours. I hate it."

• Aur...
• Taken for 1 to 6 months
• May 14, 2015

For Multiple Sclerosis "I just had my 4th infusion. Since the previous one and this past one, I have been extremely fatigued. I can't seem to do anything for any period of time. I have trouble sleeping due to a strange feeling I get in my chest (feels like my pulse is jumping out of my chest, no pain, just a very weird feeling). I was hoping this Tysabri was going to help me, but it hasn't. :("

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

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."

• Lin...
• Taken for 5 to 10 years
• October 19, 2013

For Multiple Sclerosis "I was taken off Tysabri when my original consultant left the hospital. After 5 years of better quality of life, I now experience some nasty side effects after coming off the drug. Terrible rashes, MS symptoms returning, i.e., dizziness, fatigue, coordination problems, to name a few. Feel pretty rubbish to be honest. Consultant said couldn't justify the script as scans had no changes and was concerned about PML risk. I accept the risk, always have. Surely scans indicate the drug is doing what is expected? I'm stuck now, what is available for me to try? Cost is a big deciding factor!"

• Abb...
• January 6, 2012

For Multiple Sclerosis "My husband has been on Tysabri for a year now. The first six months were great. He liked that he had no nausea and could control his bowels compared to Copaxone and Rebif. Fatigue improved. He had very slight improvements to his walking gait and balance. Mental attitude was improved. Lately, balance is poor, walking is dragging/carrying his leg forward, twitches and jerks are back. Strangers call him Spider-Man in public (he laughs). Depression is setting in again. Hearing ringing sounds."

• Bar...
• January 29, 2020

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?"

• myg...
• May 6, 2010

For Multiple Sclerosis "I sometimes get a headache and some fatigue the day of and after the infusion, but this has done wonders in keeping my MS symptoms at bay. My lesions haven't been active for about a year now, which I believe is because of the Tysabri."

• eva...
• January 31, 2018

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."

• Thu...
• Taken for 2 to 5 years
• February 8, 2021

For Multiple Sclerosis "I have been on Tysabri for a couple of years. I see improvement with no new lesions. As for many, the week before the infusion, it is like I crash. I hurt with low energy. I will take this compared to more disability. The brain infection chances are scary, but living life to its full potential is worth the risk."

• fai...
• June 15, 2011

For Multiple Sclerosis "The only side effect is extreme fatigue for about a week. It goes away, and then I am quite good the next three weeks. So far, so good."