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 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."
ZumbaMom (taken for 2 to 5 years) June 27, 2016
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"In July of 2014, I was given the diagnosis of MS. The medicine has worked well for me so far. I have headaches after infusions, they don't last long. I take Cambia for the headaches. Tysabri helps me to walk, drive, travel, and keep my job. My dizzy spells don't happen as much. Tysabri is the only medicine I've taken for MS. I am still in shock from being diagnosed with this condition. I am very happy Tysabri,even with the risks of JCV and PML."
2014 MS June 3, 2016
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"Was diagnosed in 2009. I was on Rebif for 2 1/2 years and had 2 relapses. My doctor and I decided to switch to Tysabri which I have been taking for more than 4 years. No relapses. MS is stable. I continue to test negative for JCV. This medication is easy and successful for me."
Two turtles (taken for 2 to 5 years) May 8, 2016
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"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."
DaytonTrish (taken for 2 to 5 years) April 13, 2016
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"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"
MSreallife (taken for 1 to 6 months) March 7, 2016
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"Hi I am a 52 year old man who has had MS for about 18 years (SMPS) I'm on a lot of hormones for other problems which have helped masked the MS symptoms but not so any more, I'm now on Ty and have had 5 infusions and have not noticed any changes better or worse no side effects, I hope for a miracle but who knows, I'm JC neg and have a lot of trust in my Neurologist, lets all hope for a better tomorrow cost is 0 as Australia medicare pays"
Dastardly (taken for 1 to 6 months) March 1, 2016
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"I have been on it before it was released. I was one of the 900 in a blind study that was actually on Tasabri. I couldn't think of how I would be if I didn't take it."
Dontworrybehappy (taken for 10 years or more) February 26, 2016
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"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."
Ang 1 February 26, 2016
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"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"
Lainie S (taken for 5 to 10 years) January 6, 2016
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"I was diagnosed with RRMS 1992 while on deployment in Africa. Returned back to the states and had an MRI done to positively identify the MS. Done, was discharged from the Navy 1994. I then started Bataseron 1995 after having repeated relapses. Stayed with that for a few yeas then switched to Avonex, again stayed with that for a few years and switched to Rebif which was okay but began finding it hard to find inject points on my body. Then switched to Copaxone for a short time and it was determined that I was allergic to the drug so one more time. In 2008, I started Tysabri and am still on it. The infusions are not a big deal because I am self-employed. Do I feel like my old self, can%u2019t remember what that was like however I still Scuba dive,"
Patmus January 1, 2016
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"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."
Wiselady39 December 20, 2015
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"I first wrote a year ago. I am now thousands in debt due to the freq cut off of benefits from organizations that give grants. I am not informed when the cut off payments. So I owe thousands, why don't the infusion centers notify patients when they have no funding. I have had nothing but severe pain in my joints. Severe rashes, sores, etc. I can't stand how I feel. I was over $200,000 in ACTH this last year. How can I afford to raise my family when I am denied all help. Who is getting all this money. I have been a coma for over 8 times this last year. Twice on life support. 8 cases of sepsis. I have no family, just two handicap children that I adopted. I can't believe Drs would do this to patients."
FindingHannah (taken for 1 to 2 years) December 20, 2015
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"After being diagnosed with MS I started on rebif injections which I continued with for a year and a half. I spent six days of the week with flu like symptoms. To be on rebif I had to stop taking warfarin which I need to help with another condition. 7.5 years ago I was switched to tysabri so I could once again take warfarin at the same time. That was the best thing that happened. I'm no longer feeling dreadful for the majority of the week and in fact suffer no symptoms. I'm fortunate that I'm jc negative and that the government here covers the cost of my infusions and best of all had no flare ups since I started on tysabri."
Sades December 11, 2015
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"I was on Tysabri for 103 Infusions, almost 8 1/2 years. I was diagnosed in 2002. Copaxone first with reactions, then used rebiff for 4 yrs. Helped alot while it was working, then it stopped in 2006. Started Tysabri. The Best MS Medicine! I Loved It! I am Going to Miss having No Symptoms, Side Effects or Flare Ups. I just talked with Doctor going to try Gilenya, in 2 Months after Solulmedule. Keep "
Lelamarie73 October 24, 2015
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"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."
KatieJo21 August 14, 2015
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"I've been on tysabri since January 2008 and have not had any flair ups. It's even better that they can now test for the virus that causes the rare brain infection, which I don't carry. Benefit I like is its done every 28days so I don't worry about missing a dose or giving myself a shot. It usually takes about 3hours for the infusion. Only negative about tysabri is the cost. I'm on social security disability and after Medicare's payments I'm left with a bill for medicine and infusion of close to $1200 every 28days."
Dhbeck (taken for 5 to 10 years) July 30, 2015
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"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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