Tysabri questions

[jkdavid99]

Hello

I need to schedule my first dose of Tysabri.real soon. My question is, I have a cruise planned for January 18th. Should I wait until I get home to schedule? What if i get sick from the infusions aND can't go? I really need this vacation . I know the timing is important since I hear it only lasts about 3 weeks. I have time for first 2 infusions before I go. Should I do it and hope for the best or should I wait?

Also please share your experiences with Tysabri. I am a chicken and terrified again. BTW. I am JC negative

Thanks

[Royjr]

All my research I’ve haven’t heard of anyone getting sick from the infusion per say. I guess anything is possible but I been on Tysabri for over 10 years and the only time I had an issue is when I was taken off briefly. I would make sure to get your treatment before you go since you want it to be fresh in your system so you have the energy to enjoy yourself. Go on your cruise and enjoy yourself. I wish you luck....

[Raingrrl]

Hi jkdavid99 ! I was on Tysabri for over 5 years and never had any issues with the infusions. I haven't heard of anyone getting sick from them either. But with any medication there is always a chance that some people won't adapt to it as well as others. You know your body best. I tend not to be sensitive to medications but I know some people have trouble with just about anything. Tysabri was great and kept me stable but unfortunately I'm JVC+ and my index kept going up so my neuro made me switch.

[Purple_Lady77 in reply to Raingrrl]

Hi Raingrrl, I’m on Tysabri as well since diagnosed (2012) although I’m JVC+. My neurologist try Gilenya brought the bigger fatigue I ever had. May you please tell me what will be your next medication? FYI I live in Ireland. May GOD bless you and Marie keep you, Melanie.

[Raingrrl in reply to Purple_Lady77]

Hi Purple_Lady77 ! I just had my first Ocrevus infusion. I could not take Gilenya because I have a heart rate issue. There were not any other drugs that my neuro would consider for me. So...it was either stay on Tysabri being JCV+ and take the PML risk or go on Ocrevus and risk infections. Not a great choice but I felt I had no option but to try Ocrevus.

[Kenu]

When I started tysabri I found out that I needed to do it on Friday as I was still working. The only side effects I had was fatigue for a couple days. By Monday I was back to work and doing fine. So the next seven years I always did it on Friday and side effects stayed the same. On Wednesday before infusion I started to notice that I was due. I did great while on tysabri, no relapse 👍🤗🙏😉❤️ Ken

[Juleigh21]

I've been on Tysabri for 2 years jkdavid99 . Compared to my other 2 previous DMTs, Tysabri has been fabulous! Never had any issues or no known side effects. It only last about 21 days for me. I'm actually currently in a relapse which terrifies me that the doc will want to change meds. My advice, get the 2 infusions before you relapse! Good luck and enjoy that cruise!

[Texandyroe]

I just wanted to echo what everyone else has said...I've been on Tysabri for well over 5 years and have never, ever had any side effects. Before I retired, I would go to work, leave to get the infusion, and go back to work. No problems. I can usually tell about a week before my next infusion that it's starting to wear off. All this to say...GO ON THAT CRUISE and enjoy!

[jkdavid99]

Thank you all for your responses. You have made me feel better. I will get it done this week and go on my cruise in january. And I will have a blast. You are all so great

[Juleigh21 in reply to jkdavid99]

Great decision!

[deradakov]

I personally did not get sick from the infusion but your immune system will be lowered. I have never sailed but be careful being in a room with anyone who may be sick. I hope you enjoy your cruise.

[doveflyfree]

I have been on tysabri for MS about 4 months. It can sometimes make me tired the first few days. It seemed to work better in the first couple months. I have progressive MS and it's wearing me down. I'm not sure if tysabri is working the same. After hurricane Irma hit I have been struggling with pneumonia and MS relapse. Tysabri was awesome for 3 weeks at first!!!

Hope this helps!!!

[vickisue55]

I've been on Tysabri for 10+ years. Never have felt bad. Always have energy after getting infusion! Do and have a great time. Do remember to drink lots of water day/night before infusion. Makes getting needle/catheter in so easy as vessels are plumped up! Good luck.