Have you tried natalizumab (Tysabri) for your MS?

Thanks Statto

Don't forget to share your experience on this medication! ;)

I have been on it for nearly a year. Chose infusion over tablets as I'd forget to take them. Had a relapse every other month pre-treatment. Just had my yearly mri and it's stabilised activity/no new lesions so it must be working. I still have "pseudo" relapses everytime I get a virus or infection. The first few months knocked me out getting used to tysabri, but going in for just over an hour every 28 days is just part of life now and I don't think about it. They test for the jcv virus every 6 months. There is more risk of developing PML (brain infection) after 2 yrs of Tysabri, which I will maybe think more about in a year's time. Can't say I have side effects otherwise, maybe a little tired a few hrs after infusion. X

Hi I was on Tysabri for over 7 years. I got PML 4 years ago. I would love to talk to someone who also got a diagnosis of PML 

I have had Tysabri infusions 22 times. As I was positive to PML I had a risk to the JC virus which is extremely dangerous. I had a reaction last month so was taken off the infusion for good. I am concerned that I have been told that I cannot have any other treatments 

Hi everyone,

Don't hesitate to take part in this discussion if you have some experience to share!

I have been on Tysabri for over 6 years and have had no trouble with any after effects nor relapses 

Hi everyone,

@jerry coleman‍ , @Mal123‍ , @Statto‍ @mellymoo59‍ , @Lmcm84‍ , @Caoilinn‍ , @Annethebank‍ , @sfitzbro‍ 

don't forget that we now have a medications unit on Carenity (Give my opinion -> Medications) and that you can find the medications/treatments you've been taking, rate them and give your opinion so that other members could learn from you.

The more members comment on the medications, the more useful this unit will become.

Thank you in advance for your priceless contribution to our patient community.

Kind regards,

Margarita

I’m on Tysabri, there’s no coming off it now, infusion is every 4weeks, I’m trying 6weeks currently and wow the fifth and sixth week were killer, the pain, confusion, there was a moment where I couldn’t walk I actually got stuck on the floor, like some kind of tragic joker, on the bright side I couldn’t stop laughing, my emotions took a massive whack years ago and they make no sense... it’s difficult I asked myself recently is it worth it being reliant on meds and unable to have more kids, I say yes, there was no cutting out the stress and disability was coming hard, I have one numb arm and my left drop foot is difficult to say the least. I loved running.

I like my hospital days, I like being monitored, two years down and I’m totally addicted but it enables life, im only 35 and without Tysabri who knows.

In hindsight I could have been diagnosed earlier (it took 10 years before a doctor took me seriously) and self-managed with cannabis and meditation maybe? I have a friend with MS who does this and she has small disabilities that she has overcome.

 TYsabri is a very personal choice and it’s for life, so is MS.

It’s how you feel at the end of the day.

I feel I have to own my decision, there are worse drugs with worse side effects, I am fingers crossing it for a cure however Tysabri is a fix it’s put my MS in the freezer for now.

Good luck with whatever you have chosen (I’m not reading through all these comments to see)

All the best

Hello @emc1cle thank you so much for sharing your experience with Tysabri, I'm glad to hear that it's helped you despite the side effects. It can be hard to have to make a choice about medicines that have such an impact on your condition.

For those of you who have also tried Tysabri, have you also experienced significant side effects whilst taking it? Has it helped stop the progress of your MS? 
@Mcdill1983‍ @WhiteWolf‍ @aehash88‍ @MSWarriorAj‍ @Chelle79‍ @CatherineReid‍ @Lushjules‍ @Nixster‍ @HazelWK‍ @Sbw280874‍ @Talori‍ @Mandizf‍ @Vanda1008‍ @Chrissyzam‍ @Fearnsy‍ @MadPanda‍ @MrsMac3‍ @Dlr1618*‍ @Fernyp‍ 

Feel free to share your experiences here! You can also leave a rating of Tysabri or your other MS medicines here: Search for a medication

Take care,
Courtney