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Thread: User reviews for Tysabri (Natalizumab)

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    Distinguished Community Member Sherman Peabody's Avatar
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    Default User reviews for Tysabri (Natalizumab)


    Natalizumab (manufactured by Biogen Idec as Tysabri; previously named Antegren) is a humanized monoclonal antibody approved by the U.S. Food and Drug Administration (FDA) as a monotherapy for the treatment relapsing-remitting forms of multiple sclerosis (MS), and of Crohn’s disease. Administered as an intravenous injection, the drug is believed to reduce or inhibit the ability of immune cells to invade the blood-brain barrier, protecting against autoimmune attacks by the body’s innate immune system to slow the worsening of symptoms and number of disease flares.

    Tysabri is also approved as a disease-modifying monotherapy in the European Union (since 2006) for relapsing MS patients with high disease activity (two or more lesions in one year) despite treatment with a β-interferon or glatiramer acetate, and for those with rapidly evolving severe RRMS.



    "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."

    -Kate 54


    "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."



    "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."



    "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."



    "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."



    "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 with Tysabri, even with the risks of JCV and PML."

    -2015 MS


    "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


    "I was diagnosed 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


    "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 de-myelination. 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


    "I was diagnosed with RRMS in 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't remember what that was like however I still Scuba dive."



    "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 i 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."



    "I was diagnosed with RRMS in November 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'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 28 days."



    "Tysabri has been a life send for me. I have been on it since 2009 and its now 2015. Was diagnosed 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 through lots if not all of the medications. Nothing worked but Tysabri. The lesions on my brain are beginning to shrink."



    "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


    "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


    "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's caretaker!"

    -MS for 23 years


    "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 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 other meds and JC neg."



    "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 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."



    "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."



    "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."



    "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."



    "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)."



    "I have had multiple sclerosis for 12 years. Been on every medicine, steroids and the list goes on. 1 dose of Tysabri. I'm walking 50% of the time without my walker (which I was using 100% of the time for the last 2 years). My mental and my balance have made a great recovery. I can't wait for my second dose!"



    All of the above + lots more here:
    Last edited by Sherman Peabody; 10-29-2017 at 02:35 PM.

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