User Reviews for Tysabri to treat Multiple Sclerosis
Tysabri has an average rating of 7.9 out of 10 from a total of 90 ratings for the treatment of Multiple Sclerosis. 68% of reviewers reported a positive experience, while 14% reported a negative experience.
Reviews for Tysabri
"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."
"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 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."
Frequently asked questions
- How long does a Tysabri infusion take?
- How long can you take Tysabri for?
- Does Tysabri suppress the immune system?
- Is Tysabri a form of chemotherapy?
"My daughter took Tysabri and got both IRIS and PML. She never took any other immune suppressant drugs. Tysabri gave her aphasia, delusions leading to hallucinations, intermittent blindness, non-stop epilepsy, then grand mals, inability to digest food, projectile vomiting, muscular degeneration, blood brain clots and a stroke causing paralysis of her right side. After this disastrous suffering for over a year, her death."
"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!"
"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."
"I was first diagnosed with MS in 2006. I have tried Rebif, Betaseron, Copaxone, Avonex & lastly Cytoxen (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 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"
"I took Tysabri for about 4 1/2 years and had no problem. My biggest complaint was that it made my hair thin and fall out. But, my feelings have completely changed. The reason I originally went off of Tysabri was to try to have a baby. Now that I know what I know, I would have stopped using Tysabri as soon as possible. I am 35 years old and have to have a total hip replacement because of taking Tysabri. A side effect of Tysabri is Avascular necrosis, which killed the top of my femor bone. So, now I have to have a total hip replacement. This is absolutely horrible for me because I am such an active person who loves working out. I will have a hard time going back on any drug after this."
"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!"
"I used to have about 3 MS flare ups and year, and had to be on steroids all the time, while taking other MS shots, that made me very sick. I have not had a single flare up, or taken any steroids or any other meds since starting Tysabri almost 5 years ago. Also no side effects at all. I even teach zumba classes now. Sometimes only hours after my infusion. It has truly changed my life."
"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."
"I was diagnosed with RRMS in Nov 2008 (age 16). I started out with Rebif and took that for a 2 years. I found that to be too painful so I stopped taking and medication all together. In May 2012 I tried gilenya, I was on that for about 4 months in which I had 5 relapses in those 4 months. My neuro decided to have me try Tysabri. I have been on it for 3 years and next month it will be 3 years since I have had a relapse. I do feel tired and dizzy when it is hot out though."
"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."
"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."
"Hell.They won't tell you about the risk of "rebound effect" until after you tell them you want to quit.Oh yeah, I'm constantly getting checked for HPV, even though I was vaccinated against it and have been testing negative (for HPV) for over 5 yrs. but thats the least of your worries compared to what else it does to your immune system. They want to have you on it until (if your lucky) you test positive for the JC virus,and take u off ASAP.Otherwise, you'll go unnoticed and risk a brain infection, but it gets worse, they've implied that even while testing negative for the JC virus you could still wind up with "pml? Pll?" ( I forget the acronym) but in short your actually risking your life or have "permanent disability"from this horrible drug"
"I was dignosed 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 fatigue for up to two days after infusion and for the week prior to infusion."
"I have been on Tysabri since 2007. I haven't had a single relapse. MRIs are good, symptoms are minimal or nonexistent, whereas before it was relapse after relapse. I was on Copaxone for a year before Tysabri was returned to market and it did nothing for me. I am negative JCV antibodies. I go in to the infusion center every 28 days, have an infusion for an hour, wait for the hour of observation and off I go. No side effects noted during my treatment with this medication. It's not for everyone but it works very well for me."
"After 5 infusions, I have developed nucleated red blood cells. I am now waiting to hear what the neurologist has to say, but as this is a rare but documented side effect, I am done with Tysabri. This was my first medication, and I am loath to try another. Quality of life has got to be a better option than all of these chemicals that will just make me sick."
"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."
"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!"
"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. "
"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."
"The worst drug on the planet after getting one infusion I started limping, after the second infusion I had to rest and lean against something after walking less than a block. I started having suicidal thoughts and my father has me on daily check ins. This medicine is the worst thing I’ve done. I will never trust a doctor that suggests this drug and doesn’t believe my experience after several witness have commented upon my poor physical ability."
"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."
"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 by steroids. After, I started Copaxone and had 3-4 flares that caused a lot of damaged. I took this medication for 6 months and went into anaphylactic. In June, I started Tysabri. It took 6 months of fighting with my insurance to cover it. In the time being, I tested positive for JC virus. I had my 6th infusion Nov. 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 then a couple hours. I hate it."
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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