Last reply 10 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
10 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
10 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
10 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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