We are a charity and rely on donations

Charity Number: 1117194 (England and Wales)

Registered Company: 06000961

Registered address:
Shift.ms, Platform, New Station Street, LS1 4JB, United Kingdom

London office:
Shift.ms, Somerset House, Strand, West Goods Entrance, London WC2R 1LA, United Kingdom

©2024 Shift.ms

@lucys 

Last reply

lucys

Tysabri questions

Hi everyone. I’m recently diagnosed and looking at the options for DMT’s. I’m looking at the ‘hit it hard’ approach so my options are Tysabri (bloods depending), Kesimpta or Ocrevus. My first thought was Kesimpta sounds convenient but not I’ve been looking more into Tysabri injections I think they might be the right choice to start on (if possible). So for Tysabri takers I was wondering, how flexible you can be with when you have it - for example if there is an event you want to go to, that clashes, can you put it off by a day, few days, week? Or does it ever stop you being able to do the things you want to because of schedule? I know this might seem like a petty reason to choose but flexibility for me is a consideration. Also I’ve read with Tysabri that if you come off it, it can trigger relapses - has anyone experienced this? If so why did you have/choose to come off it? Is this the same with the other two drugs? For those of you taking any of the hard hitting drugs, what was it that made you choose ‘the one’? I’ve met some great people on here already - it’s made such a difference to being diagnosed and feeling alone so thanks to all of you for the sense of community.❤️
7
@lemon
@lemon
 

Yes, you have a bit of a flexibility with it but not more than a few days. They used to ask me at each infusion when I wanted to come in next, and I had a choice between, say, Wed, Thu, Fri during the week that was 4 weeks away. Also, Tysabri is now often given every 6 weeks so that makes it easier. I switched from it to Ocrevus after 5 months. It was the plan from the start as I'm JCV+. It just gave me time to do vaccinations before Ocrevus. I had no relapse but they made sure I had my first Ocrevus dose 4 weeks after the last Tysabri dose to avoid any gaps. Having experience both drugs I find Ocrevus is easier in terms of not thinking about it for 6 months and worrying when your next infusion is. But good thing about Tysabri is that it doesn't supress your immune system, and vaccines still work. Pros & cons. Good luck with your choice!

@GeorgeH
@GeorgeH
 

@lucys hi I am in the same position. Same 3 choices. I have decided to go for Kesimpta. I decided I wanted to do this myself and going into hospital even just every 6 months was going to make me feel a bit ‘institutionalised’ . Plus it’s the newest and seems to be the easiest and I want an east option as everything is just so flipping hard! But yes , same here, it’s a tricky one. X