Natalizumab and Tiredness: What Users Say

• Kat...
• August 14, 2015

Natalizumab for Multiple Sclerosis "I was diagnosed with RRMS in Nov 2008 (age 16). I started out with Rebif and took that for 2 years. I found that to be too painful, so I stopped taking any medication altogether. In May 2012, I tried Gilenya. I was on that for about 4 months during which I had 5 relapses. My neurologist decided to have me try Tysabri. I have been on it for 3 years, and next month it will be 3 years since I last had a relapse. I do feel tired and dizzy when it is hot out though."

• ash...
• January 12, 2014

Natalizumab for Multiple Sclerosis "I was diagnosed in 2010. Tried Copaxone and Avonex. They caused allergic reactions. Started Tysabri in March 2012. I haven't had any new lesions. I get tired and bad headaches after infusions. The cost is getting to be too much, even with my insurance from my employer and the assistance program from Tysabri."

• Mom...
• February 16, 2010

Natalizumab for Multiple Sclerosis "I've only had 2 infusions of Tysabri so far. My Dr. is planning on keeping me on the drug for 12 months. So far, the side effects are minimal: a migraine headache and extremely tired. BUT those I can certainly live with. Within 1 day after infusion, they are gone. This drug so far is much better. I seem to be feeling better both mentally and physically. I wish this drug was the first drug that I would have been given 13 years ago -- maybe then I would not have been classified disabled and still be able to work."

• Kat...
• April 15, 2009

Natalizumab for Multiple Sclerosis "Have had 12 treatments so far for MS. Have experienced sometimes extreme tiredness following treatments. Have gained about 40 lbs in the past year since starting the treatment with no significant changes in diet or exercise. On the good side, am glad to not be taking daily injections anymore."

• Flo...
• November 28, 2019

Natalizumab for Multiple Sclerosis "Copaxone was the first medication for two years, after the 2015 definitive diagnosis of MS, but had horrible injection site side effects and more lesions. The first two infusions I felt good and some of my symptoms had eased since I had a relapse while off meds. The fifth infusion I had chills and fever for a few days, and that hasn’t happened again. The worst side effect experienced is tiredness for several days and sometimes chills. I use a cane from time to time for balance and weakness. I won’t know if Tysabri is working until the February MRI and am hopeful for no new lesions. This medication is better than all the horrible injections. I do get depression after as well, but take a low-dose antidepressant, which has helped very much. I am JC negative. It is good to know after reading reviews that I am not the only one who experiences tiredness after infusions. My neurologist’s PA said she hasn’t heard of anyone with side effects."

• And...
• Taken for 10 years or more
• May 3, 2021

For Multiple Sclerosis "I have been taking Tysabri for a decade, and it has been a godsend!!! My MRIs have shown improvement, and the only side effect is that I become tired an hour after the infusion and stay low energy for the rest of that night. The next day, though, I'm full of energy, steady on my feet, and in a great mood! The week before the infusion, I start losing balance again, but that's the whole of it... until this month, when I tested JCV positive for the first time. I hope and pray that my doctor and I can find something that is equally effective and does not pose the same PML risk for JCV+ patients!!"

• 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."