Last reply 2 months ago
First Tysabri treatment

Hi guys.. first time posting here.
I’m currebtly sat having my first infusion of Tysabri. I haven’t felt nervous about it at all but wondered if anyone here can share their experiences/advice about it with me?

I was diagnosed with RRMS about 9 years ago, was on rebif and then copaxone. I stopped treatment two years ago to travel and live abroad. I’ve been lucky with relapses in that before this year, I only had three minor ones but this year I’ve had another three and they’ve been awful. The one I’m coming out of now started about 8 weeks ago. I had to return home from living in China and ended up in hospital on steroids for a week. It’s been awful. But I’m loss better than I was and treatment is started now so that’s the main thing 🙂

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cherbear
2 months ago

Sorry to hear about your problems. I am new to this site and new to posting as well. I am on Tysabri as well. I have been on for about 10 months and according to my doctor, will continue for awhile. There is nothing to be nervous about. I have had no problems or noticeable side effects. I am JC negative so that is not a concern. If you haven’t already reach out to BIO-Gen (the manufacturer) for information and cost share. I haven’t done that yet since my deductible was met with all my prior appointments. But worth checking out because my experience is cost is about $20,000 per infusion. I will definitely be doing that for the new year.

A typical appointment for me is going in check vitals, chat about routine questions, and then hook up to IV. They run a saline first, then the drug and then 1 hour of saline after. Checking vitals along the way. I bring my daughter or mom with me and we play cards to pass the time. I have noticed my MS symptoms improved and have another MRI in two months.

Good luck and just relax (makes the IV easier). Stay positive. I know it is hard, but it is the only option! Hope my experience helps you to see there is nothing to be afraid or nervous about. Take care. 🙂


gijs
2 months ago

Tysabri works wonders for me, love it! Never gonna stop it (unless, you know, I have to 😉 ). Don’t worry much about it and enjoy the benefits of the treatment.

Good luck!


kami
2 months ago

Like you I’ve had RRMS for around 10 years.
I’ve been on Tysabri for over four years and can only assume it’s working as I haven’t experienced any new symptoms. I’m told the existing symptoms will continue to progress as the damage has already been done and cannot be repaired.
I don’t get any side affects after the IV and in the opinion of my neurologist, it’s the best treatment for me that is currently available and I should continue with it unless I experience problems as I am JC positive.
Hope it has a positive effect for you.

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