User Reviews for Tysabri
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.
Learn more about Tysabri.
Reviews for Tysabri to treat Multiple Sclerosis
Review by Flyer man (taken for 1 to 6 months):
I was diagnosed with MS is 2014 not long after I had optic neuritis in my left eye. The neuro opthamogist misdiagnosed the optic neuritis as a mini stroke. So sad too bad but you are blind in your left eye. It took a hospital stay of a week before a neurologist finally got suspicious and ordered several tests, mostly MRIs and a spinal test before confirmed. The problem was I was a 68 year old male, very fit from playing tennis 4 days a week and working as a pilot. I was on two medications, copaxone followed by techfadera . I failed on both as I had more symptoms and more lesions on the brain. i am now on tysabri , am positive for the JC virus , monitored but doing tremendous. A wonder drug. I prefer quality of life versus quantity.
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April 27, 2015 6:32 AM
Review by MS for 23 years (taken for 2 to 5 years):
I have been on only 3 types of medications for MS and this (Tysabri) is the best of the 3. I have been on it since June 2010 and have had no ill side effects! I started this medication with a different Dr but once I became JC positive he wanted me to switch to a different medication. I was not happy with the choices he gave me and he was very adamant that I needed to change medications. I did some research about another MS Clinic and made an appointment there. My Dr now is still very careful with me and keeps taking blood tests every 3 months to monitor my JC number. Last month my number was .65 and as long as it stays below 1.5 he is Ok with me taking it. This medication makes me able to be my husband care taker!
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January 14, 2015 2:22 PM
Review by El_beebee (taken for 6 months to 1 year):
I am 24 years old and have been on Tysabri for about a year, after Rebif did not work for me. I have zero symptoms while on Tysabri. Infusion is easy and only once a month, and I went LESION FREE while on it! The ONLY reason it's not a 10 is because of the black box label for PML. This was such a stresser for me even though I was JC negative...until now. I am going off of it because I am now positive and will be switching to a new medicine, which I'm still debating on. Overall I say if you're JC negative, it is an amazing medicine.
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December 8, 2014 8:23 PM
Review by DaleAlan (taken for 5 to 10 years):
The disease modifying medications had no effect on my Multiple Sclerosis. Tysabri stabalized the progression but saw no improvement.
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September 5, 2014 12:59 PM
Review by Findinghanna (taken for 1 to 6 months):
I am on my third dose of Tysabri. I did poorly on Avonex, and my neurologist has been hesitant to place me on the other Multiple Sclerosis medicines due to the serious side effects of the Avonex. I developed sepsis 10 times in 2 years. So when I was admitted to the hospital and transferred to ICU twice in 2 months due to MS we decided to try Tysabri. The side effects have been difficult to say the least. Terrible urinary tract infections, headaches, ringing of the ears, anxiety, and depression. I am JCV positive so in fairness the anxiety may be due to fear of the PML virus. I am scheduled to have lab work after the next infusion and will make a decision on continuing therapy.
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July 7, 2014 10:08 AM
Review by babygirlnbooboo:
I'm doing good on it. No relapse in years and hope it stays like that!
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May 22, 2014 4:03 PM
Review by MsSJ:
After the misery of interferon, Tysabri got me ambulatory again and has kept me walking for ten years.
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March 15, 2014 6:26 AM
Review by Amichaelv (taken for 2 to 5 years):
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.
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February 9, 2014 12:11 AM
Review by ashes4tre:
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.
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January 12, 2014 12:34 AM
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!
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October 19, 2013 4:14 PM
Review by Bekajenjam:
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.
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October 19, 2013 7:25 AM
Review by lilanglwannabe:
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.
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October 6, 2013 6:22 AM
Review by K9PAWC (taken for 1 to 2 years):
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.
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September 20, 2013 11:47 PM
Review by STDthanksfortheinitialsmom:
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!
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September 17, 2013 11:57 PM
Review by Stimey:
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.
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August 20, 2013 1:04 PM
Review by Ana2013:
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.
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August 5, 2013 5:09 AM
Review by MercedesNicole:
Tysabri seriously changed my life. Went two years on it, I have been one year without it because I have the JC virus and I'm now going into a flareup, unfortunately. I really miss the infusions.
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June 25, 2013 9:22 PM
Review by LSE:
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!
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May 7, 2013 8:51 PM
Review by Hey im Using Tysabri (taken for 1 to 6 months):
Just want to say thank you to Tysabri inventors.
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April 7, 2013 3:11 PM
Review by jen82770:
Makes me tired. New symptoms since I started it, joint pain, depression. May not be continuing this.
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January 14, 2013 5:48 AM
Review by Anonymous:
All good!! Been receiving Tysabri for about 4 years and NO relapse. I was relapsing every 12 months!!
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October 24, 2012 4:04 AM
Review by Anonymous:
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.
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March 23, 2012 1:11 PM
Review by dclarue64:
Best treatment I have been on yet.
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February 16, 2012 11:16 AM
Review by Abbe Hill:
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.
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January 6, 2012 8:26 AM
Review by Anonymous:
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).
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September 7, 2011 11:12 PM
Learn more about Multiple Sclerosis
Micromedex® Care Notes:
Related encyclopedia articles:
- BAER - brainstem auditory evoked response
- Bowel retraining
- Cerebral spinal fluid (CSF) collection
- CSF oligoclonal banding
- CSF total protein
- Head MRI
- Lumbar MRI scan
- Multiple sclerosis
- Multiple sclerosis - resources
- Remembering tips
- Urinary catheters
Symptoms and treatment for:
Mayo Clinic Reference: