Lemtrada decision

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Lemtrada decision

Postby smo3 » Thu Dec 22, 2016 12:35 pm

Hi all,
Just wondering how you made the decision to take the Lemtrada option? I'm being steering towards Lemtrada or Tysabri due to the nature of my RRMS.. I haven't taken any other medications yet so it certainly feels like i will be jumping in with both feet, I don't feel very comfortable about the amount of potential side effects. Though like all of you I'm unlucky to have MS I'm also very lucky to have fairly few symptoms which (amongst denial) is probably why I'm struggling with the decision and associated risks..
Your thoughts please...
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Re: Lemtrada decision

Postby Kez2011 » Sat Dec 31, 2016 1:45 am

Hi, I have just found this site. You ask exactly the situation I am in!! 5 years since diagnosis with one relapse in Feb! Now I'm told to start Lemtrada or tysabri?? Gone from nothing to the top medication! Did u decide what to do?
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Re: Lemtrada decision

Postby Anunymouse » Thu May 18, 2017 11:34 am

FWIW I've been asking for Lemtrada since I was diagnosed. Specialist I was seeing was involved in the trials and said I'd be a perfect candidate, if I had been referred to her a month earlier. But it was closed so I was SOL.

After that it has been "You're not bad enough to take it", over and over and over again. Having a Dr. tell you that drug A does nothing and drug B will likely keep you out of a wheelchair, but you can't have drug B until you're in a wheelchair is insane. And when you ask why they prefer to stay 1 step behind at all times instead of getting in front of the bus, they agree it would be best, but you just get a blank stare afterwards. It really makes no sense.

Given the ability, I'd be on it. If I had enough $$$ I'd just go out of pocket and be done with it, but it's not a cheap route to go.
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