Last reply 2 months ago
On behalf of my brother

Hello.
I am wondering if anyone has had the infusion of tysabri . My brother also has been diagnosed with remitting and relapsing ms but his is highly active. Of course the information on this medication makes him conserned with the side effects. From what I gather if he has this infusion it should keep him as he is if not his symptoms will increase. But he is obviously worried as he doesn’t even want to take paracetamol when he has a headache.
I would be very grateful if anyone is on it to let me know how it is working for them
Many thanks
Hilary

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dmargarita
2 months ago

@hilaryk0757
hey, i had Tysabri for 2 years and it was very good for me. I had no relapses in those 2 years , and the only side effect was that i felt a little tiered after each infusion. I know the symptoms and side effect may be different for each person, but my experience was very good and hopefully it will also work very well on your brother. 😀


keepupthefight
2 months ago

@hilaryk0757

I was diagnosed a few years ago, and Ive been on Tysabri ever since.

I was forunate enough to be treated a hospital that promotes effective treatments from the start. I was told i have highly active RRMS too.

I don’t regret my decision to take Tysabri. I’ve been stable, and I have had no side effects from the treatment at all.

I know many people do well taking Tysabri , it seems to be one of the most effective treatments available and most well tolerated.

The risks associated with it, are monitored rigouroulsy. In fact, you can’t take it without being screened for those risks. and your Ms team will be actively checking to ensure you are monitored.

From my own experience, Tysabri, allowed me time to recover, physically and mentally, from the initial attack.

I was also someone relunctant to take medication without it being necessary. From my research, and the evidence that it can help slow down progression and relapses, I decided it was necessary.

Wishing your brother all the best with his treatment. Don’t hesitate to ask anything else.


sherryak
2 months ago

I did the monthly Tysabri infusions for about 10 or 11 months. I eventually tested positive for the JC virus & had to quit. But I actually like the Tysabri infusions the best of any of the treatments that I’ve done. I always fell right to sleep as soon as I was hooked up. I would wake up when the transfusion bag would get low & start beeping at me. I loved getting a nap in the middle of a workday. I never had any problems with Tysabri. Tysabri started giving me back some of the things I had lost. When I heard a song that didn’t sound like easy listening & when my foot stepped on an uneven driveway without me falling, I knew I was getting better. No one’s experience is EVER like another person’s, but Tysabri is something to seriously look into.


brando
2 months ago

As long as your brother is tested regularly for the JCV virus, he should be fine using this drug. I have been on Tysabri for 10+ years and I have not had a single symptom since.

the important thing to always consider though is to listen to your body.

I was underage when I first started and had to go through blood screens and doctors examinations every single time until I turned 18. it’s an excellent drug for people with MS but it’s also not a one size fits all kind of deal as well.

hope this helps 🙂

Brando


bradydenise
2 months ago

Hey
I just start e d on tysabri in February after a really bad relapse and a pregnancy n so far I’m grand no side affects n it’s once a month so u donr have to remember to take it.
Just get regular mri so grand so far
Good luck x


jumpylegs
2 months ago

I was DX 25 years ago when there were no treatments. I have highly aggressive MS & had 2 massive and 10 minor ( pins& needles/ numbness) attacks every year. All those attacks caused permanent, irreversible disability.
I went on Tysabri 9 years ago and the results were immediate. No more attacks and luckily no side effects.
If Tysabri had been available 25 yrs ago, I would have no permanent damage and would still be working.
Tell your brother to grab this opportunity- it will stop attacks, prevent permanent disability and let him live a normal life.

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