@Kirsty87 

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Kirsty87

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 :)
@cherbear

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

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!