I’m starting Tysabri on 2nd April, and was wondering what people’s experiences of it were with regards to side effects and how well it’s working.
Also, any good ways to pass the time while the stuff is going through - I can get quite bored easily at times haha
Hi Scott, I’ve just had my 16th infusion today. It’s the best treatment I’ve had so far. I’ve not had any side effects and I feel that my function has improved since I’ve been on it. I also have much more energy now too. I sometimes feel a bit weary after the infusion…today I came home and had a nap…but I’ve also had quite a busy week so it could have been down to that. Before I started with Tysabri I was having trouble with my right leg but this week I’ve been out for a run. Not to give you a false picture, I do have a healthy lifestyle, take supplements and avoid the booze but I do feel the tysabri is definitely keeping my ms from progressing. Hope this has helped and good luck x
hiya
i have had 8 infusions now. i had loads of damage done before starting and it cant repair whats already done-i was hoping that i would be able to see with left eye but no change there. the good thing is no new attacks since starting it. i have heard stories of folk ditching their stick/wheelchair which is great! i still have to use powerchair. but i still wait for a miracle.
ellie
oh re passing the time-meditation! wonderful if u can master it!
Hi
I’ve had about 50 infusions now, so a bit of an old timer. In terms of side effects, I’ll often be more tired in the week before an infusion, and I’ll be knackered for the rest of the day when I have it. I’m more prone to getting infections. And I also get really dry skin on my feet,though don’t know if that’s because of the Tysabri or something else. But that’s about it for the side effects. In terms of the good stuff, it’s cut down my relapse rate, and I get less spasms and pain in my legs too.
When you have the infusion, you’ll probably be with a bunch of others who are having it at the same time. So while I always take a book & my mp3 with me in case, I rarely need them as I’m too busy having a chat & a laugh with the others.
Good luck!
Dan
Hi Scott
I had my 73rd infusion Last Monday I’m doing great I’ve no side affects the 1st year or 2 I used to get really tired after my infusion that could last for 24 hours but now I get a real energy which last almost the 4 weeks but I’ve learn’t I have to keep fit and active to stay like this and keep the fatigue away.
Before I started Tysabri I was relapsing about every 5 weeks which lead to me ending up in a wheelchair with only the use of my left arm but now I’m out of a wheelchair for over 5 years now I’m almost normal I haven’t had a relapse since going on Tysabri I even go to the gym now a few times a week and swim and everything.
I would say have patients and give it plendy of time.
Mark