Tysabri

[Leahdevora]

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

[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 in reply to Royjr]

Thank you for your response and support!

Leah

[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 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]

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 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]

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

[Leahdevora in reply to greaterexp]

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

[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]

Welcome to the group Leahdevora !

[Leahdevora in reply to Morllyn]

Thanks!

[melack01]

Welcome to the group.

[Leahdevora in reply to melack01]

Thanks!

Leah

[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 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 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 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 in reply to Leahdevora]

Understood.

Hope it helps and that you stay safe!

[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 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]

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]

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

[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!