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've used Tysabri for past couple years. Prior to Tysabri, I used couple other drugs but nothing worked as well as Tysabri. My wish would be to take it every 21 days instead of 28 days. The 4-5 days before infusion time can be very painful with head & body aches accompanied by brain fog I don't understand the risks for a 21 day infusion, but I'm willing to learn"
Kate54 (taken for 2 to 5 years) May 30, 2017
12 users found this comment helpful.
"I have been on this medication for just about a year and think it is wonderful the only issue is about a week before my infusion I have a real increase in symptoms I wish that there was a 21-day option because 28 is too far"
GuidingMyTR (taken for 6 months to 1 year) May 25, 2017
10 users found this comment helpful.
"I've been on it for a number of years and it appears to be helpful."
Katenky (taken for 2 to 5 years) March 18, 2017
10 users found this comment helpful.
"Tysabri has been wonderful so thankful"
Currahee (taken for 5 to 10 years) March 11, 2017
8 users found this comment helpful.
"I have been on Tysabri since Jan 2015. Every month, about 7 days before my next infusion, my body is completely ravished with joint pain, pain & fatigue in my arms and legs. I have a cob web feeling in my left shoulder blade and my hands remain numb. I have been forced to go to the ER because the pain was intolerable. A few times I made it to my infusion but couldn't walk and the pain was so great they had to give me Dilaudid before my infusion. It usually takes 3 days after the infusion for the pain to subside . Every single month I spend 10 days in hell, but I am blessed to get 20 days of normal life. The FDA needs to understand that this drug does not last 28 days, this should be a 21 day cycle, otherwise people suffer with this drug."
Crista Love (taken for 2 to 5 years) February 3, 2017
22 users found this comment helpful.
"I have to give it 10 out of 10, as it changed my life. After years of injecting other meds and continuing to relapse, I started on Tysabri in 2009. I can honestly say that I cannot work full time without it, as the fatigue is greatly improved whilst on it. I have come off to get pregnant, and then continued back on after two babies. My last MRI showed that some of my lesions actually got smaller, and I have not had any brain atrophy whilst being on this drug. The only side effect I notice is slightly thinner hair. This is a drug that can have serious implications, and I think the choice to take it must be thought carefully, weighing all the benefits and risks. But for me, it has saved my life for 7 years."
Mparm December 30, 2016
26 users found this comment helpful.
"I was diagnosed with ms in May 31 2016. First we wanted to do tecfadra but insurance wanted me to do something cheaper. In that time I had a horrible relapse. So we choose tysabri my doctor said it was the only other drug strong enough to deal with my ms. After my 4th infusion I tested JC positive and had to be hospitalized. I am no longer on it and I am not a fan of it"
Bsteezzyyy November 30, 2016
18 users found this comment helpful.
"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."
Waterwoman November 21, 2016
40 users found this comment helpful.
"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."
Msmckenna (taken for 1 to 6 months) November 14, 2016
35 users found this comment helpful.
"Tysabri is the first medication I was put on after being diagnosed with MS. So far it has been very effective, I started taking it after recovering from my first attack. I don't know if it is the Tysabri or just my body healing, but over the last 6 months I have continued to feel fewer and fewer MS symptoms. I was even able to run a marathon recently. I do treat positive for the JC virus antibodies, but my doctor had assured me that I can take Tysabri for up to two years with minimum risk of PML. The injection typically takes 1 hour, with another hour of waiting (something the government had mandated for some reason or another), but I have not felt any side effects."
HandyDan (taken for 6 months to 1 year) November 12, 2016
34 users found this comment helpful.
"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
65 users found this comment helpful.
"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
47 users found this comment helpful.
"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
49 users found this comment helpful.
"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
60 users found this comment helpful.
"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
62 users found this comment helpful.
"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
45 users found this comment helpful.
"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
66 users found this comment helpful.
"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
71 users found this comment helpful.
"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
76 users found this comment helpful.
"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
62 users found this comment helpful.
"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
59 users found this comment helpful.
"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
48 users found this comment helpful.
"Unable to move or function any part of my body properly. "
olisa pierce December 15, 2015
30 users found this comment helpful.
"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
50 users found this comment helpful.
"I felt like normal again!"
Mandark80 (taken for 2 to 5 years) October 30, 2015
49 users found this comment helpful.
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- Drug class: selective immunosuppressants