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
"I am 47 years old. I was diagnosed with MS in March 2013. 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 my legs. 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."
EH1609 (taken for 1 to 2 years) July 24, 2015
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"Tysabri has been a life send for me. I have been on it since 2009 and its now 2015. Was dignosed in 2004. We can count back now to where my symptoms were started when I was in 1st grade, so it has taken me a long time to get it under control, been thru lots if not all of the medications nothing worked but tysabri. My lesions on my brain are beginning to shrink."
mser (taken for 5 to 10 years) June 1, 2015
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"I was diagnosed with MS in 96 and was put on Betaseron. Moved on from that to Avonex, Rebif, Copaxone, and Avonex again. In 2010, I experienced a severe flare up involving complete paralysis on my right side. Obviously the Avonex was doing nothing and my neurologist suggested Tysabri. At that point, I really didn't care about the side effects. All I wanted was some semblance of my life back. As it turned out, Tysabri is and was a miracle drug. I regained the use of my right side, was able to return to work as a state trooper, and eventually retire."
Thankful for tysabri (taken for 2 to 5 years) May 29, 2015
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"I just had my 4th infusion. Since the previous one and this past one, I have been extremely fatigued. Can't seem to do anything for any period of time. 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. :("
Aura218 (taken for 1 to 6 months) May 14, 2015
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"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."
Flyer man (taken for 1 to 6 months) April 27, 2015
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"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!"
MS for 23 years (taken for 2 to 5 years) January 14, 2015
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"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."
El_beebee (taken for 6 months to 1 year) December 8, 2014
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"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."
Findinghanna (taken for 1 to 6 months) July 7, 2014
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"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."
Amichaelv (taken for 2 to 5 years) February 9, 2014
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"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. "
ashes4tre January 12, 2014
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"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!"
Lindsey McGrath (taken for 5 to 10 years) October 19, 2013
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"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."
Bekajenjam October 19, 2013
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"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."
lilanglwannabe October 6, 2013
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"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."
K9PAWC (taken for 1 to 2 years) September 20, 2013
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"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!"
STDthanksfortheinitialsmom September 17, 2013
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"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."
Stimey August 20, 2013
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"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. "
Ana2013 August 5, 2013
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"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."
MercedesNicole June 25, 2013
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"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!"
LSE May 7, 2013
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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: