Tysabri: I'm going to be getting to take... - My MSAA Community

My MSAA Community

8,918 members20,601 posts

Tysabri

Leahdevora profile image
23 Replies

I'm going to be getting to take tysabri next month and I wanted anybody's feedback on that infusion and what do experiences have been Thank you Lisa I'm new to the community

Written by
Leahdevora profile image
Leahdevora
To view profiles and participate in discussions please or .
Read more about...
23 Replies
Royjr profile image
Royjr

Hello Lisa, the infusion part most of the time is uneventful as long you have a good tech to input the IV. One hour of receiving the medicine and one hour of observation. The two hours can go pretty quickly.

Leahdevora profile image
Leahdevora in reply to Royjr

Thank you for your response and support!

Leah

Juleigh21 profile image
Juleigh21

Welcome Leahdevora ! I'm sure you'll get lots of support here.

I've been taking tysabri since March 2016. It has changed my life! I haven't had a relapse since starting the med. On the 2 meds I took before tysabri, I had 4 relapses in 14 months. I've never had any side effects while being on tysabri that I've noticed. I'm walking better than I was. The med took a few months to build up in my system before I noticed a positive change. Good luck to you! I hope you have positive results too!!

Leahdevora profile image
Leahdevora in reply to Juleigh21

Thank you so much for letting me know about all that was so nervous about it because I've never had a fusion before and I've taken for other therapies and I still have all sorts of flare ups then issues Lisa

Amore55 profile image
Amore55

I was on Tysabri for six years and I loved it! I always felt like my "battery" got recharged after my infusion. I hope you like it as much as I did, fabulous medication. Kelly

Leahdevora profile image
Leahdevora in reply to Amore55

Thank you. I saw your post about your dogs and cats and I've been going through a lot of losses with my furry family as well and my dog had Cushing's Disease and I've had all sorts of other things with my animals so I'm completely with you on that and I do pray for you and I completely support all the pain that you're going through. I'm very involved with animal rescue and I always take the dogs with all the issues but I love all of them. Lisa

greaterexp profile image
greaterexp

Welcome to the group. I hope you have great results from whatever medicine you and your doctor choose.

Leahdevora profile image
Leahdevora in reply to greaterexp

Thank you. Have you taken Tysabri? That's the one they chose Lisa

greaterexp profile image
greaterexp in reply to greaterexp

Leahdevora , No, I'm on Copaxone. But you'll probably get several responses from those who do take Tysabri.

Morllyn profile image
Morllyn

Welcome to the group Leahdevora !

Leahdevora profile image
Leahdevora in reply to Morllyn

Thanks!

melack01 profile image
melack01

Welcome to the group.

Leahdevora profile image
Leahdevora in reply to melack01

Thanks!

Leah

ItsChris profile image
ItsChris

I've been on Tysabri for over 8 years. I know it may seem a bit scary at first, but bring a book or something else you haven't had time for.

I've grown to appreciate the few hours of "down time".

I've had no known side effects, no reactions, and no notable MRI flare ups while on it.

Leahdevora profile image
Leahdevora in reply to ItsChris

Thanks Chris. What makes it scary is that I tested positive for the JVC but it's a low number. The PML thing is a concern. You're OK with that?

Lisa

ItsChris profile image
ItsChris in reply to Leahdevora

That's a tough one outside of My comfort zone of recommendations...

I've been negative and still am. Which, after the first few years of initial nervousness, I felt more comfortable once the studies were concluded and the association with JC was made.

My apologies if I'm late to the party... why are you beginning Tysabri Now, being that you're JC positive?

Leahdevora profile image
Leahdevora in reply to ItsChris

I've been on Gilenya,, copaxone, abagio, techfidera and wanted to try a once a month infusion. I was told that it is still very safe. My JC virus number is very low

ItsChris profile image
ItsChris in reply to Leahdevora

Understood.

Hope it helps and that you stay safe!

kathyrags profile image
kathyrags

I was on tysabri for 39 months. never had a problem... definitely felt stronger. I have small veins, so to help I would not drink my coffee until I was set up, kept my hands warm (on occasion would wear my ski gloves) and drank a lot of water the two days before. I am jc virus positive, was monitored and never a problem.

Leahdevora profile image
Leahdevora in reply to kathyrags

I am JC positive, which does scare me a lot, but it's a low number.. I'm hoping for the best. Thanks so much for your feedback. Are you still taking it or you on another therapy? Lisa

kathyrags profile image
kathyrags

I've been taking rituxan (off label ocrevus) for about 3 years... I stopped tysabri after 39 months even though I never had a reaction my doctor thought we were pushing it... stop while ahead since I am jc virus positive.

Leahdevora profile image
Leahdevora

I'm JVC positive as well. So you were okay taking tysabri being positive for that as well? How is rituxan for you?

kathyrags profile image
kathyrags

I never had a reaction and I never had a relapse so I liked tysabri. I met a man who was on tysabri for 15 years... he was good. when we met they hadn't yet started checking if you were jcv positive so I don't know his status. I love rituxan! still no relapses... it's a longer infusion, but done every 6 months. when I started the tysabri I used a w/c... then moved to a rollator... also, I no longer would stub my toe walking over a door saddle... I couldn't pin point when the changes took place, but I would realize stubbing my toe was no longer an issue. good luck!

You may also like...

Tysabri is doing ok 😁😁😁

Treatment Centre just had my Tysabri again will be going home soon 😊. Feel ok have had no probs...

New to the group..worried about taking Tysabri.

at starting me on Tysabri. I'm JC positive (0.75 titre); however, the dr said I'm at an ok level and

Tysabri today with the flipping snow 😕

had the first infusion today and I felt fine just tired tonight but I did have to get up at 6am and...

New member and Tysabri

prescribed Tysabri. How do y’all feel about this treatment and what side effects have you...

My Tysabri experience

injection pen just once a month and it is mailed to my house. I did well on Tysabri and I'm doing...