The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
Avonex stopped working for my mom around 2006, and her quality of life was quickly deteriorating. She was using a walker and her neurologist suggested Tysabri. After discussing the severe and rare side effects, such as Progressive Multifocal Leukoencephalopathy (PML), she and my stepfather decided to go for it. She took Tysabri for just over 4 years before we started noticing signs of decline in speech and motor function. In January 2011, it was confirmed she had PML. The doctors told us she had 3 weeks to 3 months, but we had her for 8 months (and one more birthday) before she passed away in October 2011 at the age of 53. Tysabri gave her a better quality of life for longer than she could have hoped without it.
I was diagnosed in 2010. Tried Copaxone & 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 to much, even with my insurance from my employer & the assistance program from Tysabri.
Review by Lindsey McGrath (taken for 5 to 10 years):
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 m.s symptoms returning ie dizziness, fatigue, coordination problems to name a few. Feel pretty rubbish to be honest. Consultant said couldnt justify script as scans had no changes. And was concerned about PML risk. I accept the risk, always have. Surely scans indicate drug doing what is expected? Am stuck now, what is available for me to try? Cost a big deciding factor!
Just took my first does of Tysabri on 10-18-2013. Copazone stopped working after 5 years, Rebif did nothing to help. I tested positive for JC in February, then another doctor tested me in August and it was negative. So a third test showed inconclusive in Sept. Since I was on the decline I decided to take the infusion. I am 49 and want to live another 49 years. No real problems but my nerves. Slight itching the next morning and sore stomach. A lot less side effects than Rebif for sure! I worry about PML but I cannot change it. Praying for the best.
10 users found this comment helpful.
Diagnosed 2010 (age 24), monthly flares for nearly a year. Luckily after every relapse I bounced back to normal with no lasting symptoms however the constant hospitalization wrecked havoc with my life. Copaxone and Avonex didn't work as well, JC negative so was put onto Tysabri 2 years ago without a single relapse. Back to pre-diagnosis feeling. Best medicine ever.
27 users found this comment helpful.
I was diagnosed in June 22, 2012. Started Tysabri August, 2012. I have never taken any other disease modifying medicines. I am JC negative. MRI in July 2013 shows no new lesions, no active lesions. I have never had a side effect from Tysabri. When I was diagnosed, my right leg shook so badly, I could barely walk. I have drop foot, and weakened thigh and hip flexor muscles. These symptoms have improved slightly. I do not know if it is due to Tysabri or just how my MS is presenting.
I chose Tysabri because I fall into the optimum category...no other meds and JC neg.
12 users found this comment helpful.
My Multiple Sclerosis treatment: 9 years in a nutshell:
Copaxone = no real side effects, no real benefits.
Rebif = craptacular side effects, no real benefits.
Tysabri = no serious side effects (the odd urianary tract infection, drowsy after infusions), ZERO relapses since I started it in April 2012 (previously had been relapsing every six months).
Tysabri is AWESOME!
15 users found this comment helpful.
I have had 81 infusions. I have tried all other injectable multiple sclerosis medications without much success. Although the PML is in the back of my mind, I keep plugging away every month. I have a wife and four children and a safety sensitive job. I function just like any other 43 year old man (playing golf, mowing my own yard, etc). I really don't think it would be possible without Tysabri. For me and my family, we feel that it is worth the risk. I am JC virus positive also.
38 users found this comment helpful.
I have just had my second infusion and from the first I could see improvements to my balance and to my thinking. I only hope they can come up with something that is just as good as Tysabri without the risks of PML. I am a JC virus positive and I heard that after 2 years your risks of PML increase.
18 users found this comment helpful.
I was 41 when I was diagnosed in 4/98 and took Copaxone until 9/99. I was one of the lab rats in the original Tysabri trials. Then the FDA approved it and removed from the market due to PML. My MS came with a back with a vengeance & I was still on Copaxone. I got back on Tysabri in 4/07. I am almost 56 now and still working full time. I still go to the gym relatively regularly and lead a good life. If your immune system is okay other than MS, have not taken any nasty immune suppressing medicines and if they test you and you do not have the JC virus its a no brainer. If you have the JC virus its more complicated. My MS is still not easy but its my best option. Look at the stats vs. other options. Good Luck!
41 users found this comment helpful.
I was diagnosed with multiple sclerosis in 2007, 5 days after my 23rd birthday. For the first year I took Copaxone, and it did absolutely nothing for me. Then, since my MS was so aggressive, my doctors chose Tysabri for me. I have loved every minute of being on the medication. Not only have I been stable for 4 years, but my old lesions have shrunk in size. Unfortunately, due to being on the mediation for so long and coming back with a positive JC Virus test I am being taken off the medication which scares me to death. My advice to anyone considering the wonderful medication is that you have a serious conversation about the possibility of PML while on the medication. It's a choice of life or death. 1 in 250 people on Tysabri with a positive test are at risk.
40 users found this comment helpful.
My husband has been on Tysabri for a year now. The first six months were great. He liked that he was had no nausea and could control 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, twitch and jerks are back. Strangers call him spider man in public (he laughs). Depression is setting in again. Hearing ringing sounds.
24 users found this comment helpful.
Tysabri has changed my life. I have had 20 infusions now. At first I could feel a major "up" and then could slowly feel the medicine wearing off towards the end of the 28-day cycle. Now I don't feel much of an up or a down, but I feel consistent and "normal" again. I feel more level-headed, have consistent energy levels, and am able to work out at the gym two hours a day! The only side effect I've ever had was a bad headache on the evening of my infusion for the first 2 or 3 months. At my 6-month MRI/follow-up we found out that the Tysabri was actually causing a significant reduction in my lesions. I haven't had a relapse and only a handful of flare-ups (that last maybe an hour tops).
42 users found this comment helpful.
I have had multiple sclerosis for 12 years. Been on every medicine, steroids and the list goes on. 1 dose of tysabri. I'm walking 50% of the time without my walker (which I was using 100% of the time for the last 2 years). My mental and my balance have made a great recovery. I can't wait for my second dose!
42 users found this comment helpful.
I have received 36 infusions and from the 1st one, my progression stopped. My major side effect is extreme confusion. I feel as if I am going insane and taking my husband of 28 years with me. He is my biggest supporter, my hero, etc. I do not know how I would have made it the past 3 years without him. He is my translator because I get so confused I tell stories totally wrong, I talk backwards. I skip every other sentence but the thing I must keep remembering is that my MRI's have not changed from the day I started Tysabri. I am staying with it for 12 more months and hopefully my wonderful husband, doctor and I will survive this.
24 users found this comment helpful.
Have been on Tysabri for 39 months. For me, it has been life changing. I have been on it all in the last 11 yrs and nothing has worked for me like Tysabri I also experience post treatment headaches and prescription MIDRIN works great for the headache pain.
21 users found this comment helpful.
My wife was diagnosed with Multiple Sclerosis 2 months after I asked her to marry me, at age 19. Her symptoms were pretty bad. She was on Copaxone for over a year. It really didn't do anything for her. Then she went to a few more doctors who all said she had a aggressive case of MS. Her new doctor put in on Tysabri. She did very well after a couple months. She never had a serious set back. Then when we found out she was pregnant she went off of her infusions. After our baby was born 7 weeks later she had the most aggressive set back with her MS. She couldn't even hold our son. She decided to stop breastfeeding and to go back on Tysabri infusions. 3 weeks later she was able to hold him and is doing a little better each week.
52 users found this comment helpful.
I failed Copaxone and then Avonex therapy. I started Tysabri in March of 2010. Some improvement in my disability. The only side effect that I get is a two day migraine post infusion. Otherwise, I do NOT miss the shots and flu symptoms. I actually look forward to the 2 hour nap during and after infusion! I recommend this medicine to those that fail on the other ABCs!
30 users found this comment helpful.
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