I have recently been told about the above two treatments. Is there anyone on either of them to help me make my decision?
I am new to this site and was diagnosed in 2006. I am so excited to find out finally that there is treatment for us.
Please help
Hi
Glad to hear you’re excited : ) I’m surprised you’ve not been offered treatment before though, as there’s been a few things available for a few years.
I’ve been on Tysabri for about 5 years, and I’m getting on really well with it. It’s one of the most effective treatments there is, and I’ve been fairly steady on it, with only the odd mild relapse. One of the things I like best about it though is how few side effects there are. I’m knackered on the day I have my infusion, but other than that I’m not too bad. The big downside of it though is the risk of getting PML, which is life threatening. Many people choose not to go on Tysabri because of it, so that’s something you’d have to decide for yourself.
I can’t tell you anything about the other one, but hopefully there’ll be others here who have experience of it.
Dan
Hi!
Posted this on another thread re.similar quandaries.I have had three lots of Lemtrada and would be happy to help,if I can, with any questions you have.Please feel free to send me a DM x
I have just started tysabri (1dose only, 2 weeks ago) so can’t really comment on the effects yet. I am surprised you haven’t had more posts though. If it helps a little bit, have spoken to about 5 people on tysabri who would be gutted if they found they had to come off it. 1 has been on it for 6yrs, the others between 1 & 5, none have had any relapses. Yes the drugs carry risks, but don’t they all, & they do monitor you throughout. Fingers crossed. Hope you come to a decision soon. Take care C
Sorry, did forget to mention (brain fog not improved!!) don’t know if its coincidence, but, I have noticed a slight improvement to my numb fingertips already, nearly feel normal and I could feel they were warm the other day, could be I’ve not had a relapse for 3 months (which is good for me) or could be the drugs, probably won’t know till I speak to ms nurse. C
I have been on Tysabri for 5+ years. Of the two treatments Campath is definitely my first choice. I dislike hospitals after seeing my brother in recovery after a serious RTC when he was 21. Having five infusions followed by 3 the following year and in my opinion it is THE better option as I believe that it is better than Tysabri, but this is just me eh?!
Andy
Andy, that’s interesting you say you prefer having less hospital visits with Campath. One of the things I like with Tysabri is the fact that, because infusions are every 4 weeks, it means I have it with the same group of people every time. We’ve been seeing each other for a while now, so we’ve grown friendships. And it’s very common for people to be loyal to their usual group. We sometimes have people having their infusion with us one week because they couldn’t make their usual time. But then instead of staying with us, they’ll re-jig the next one or two infusions so they can fall back with their usual group. And a couple of us recently did the same thing.
I guess that goes to show we’re all different I suppose : )
Dan