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-   -   Starting Lemtrada soon (https://www.neurotalk.org/multiple-sclerosis/217440-starting-lemtrada-soon.html)

MSbelle 04-19-2015 12:02 PM

Update: I've mentioned this in some other threads , but thought I'd bring this one back up.

May 4th is my start date! Genzyme is helping quite a bit with the cost more than I expected them to which is nice (though it's still very expensive).

I am not sure anyone else here has been on it or is even considering this? I find that odd because I know there are a LOT of people out there who are.

As far as support goes, I found a FB group for Lemtrada (there's a FB group for everything!!! I was in a great Tysabri one as well!). The little family there is amazing and so supportive and I feel so good about my decision.

SCbelle 11-08-2015 09:29 PM

I am not sure about Lemtrada
 
I talked with my neurologist and was advised to wait before getting on it because there is no real track record of people being on it and the side effects. I have secondary progressive and had hopes it would stop the progression. I was also told it costs $100,000. So conflicted as to what to do

Grammie 2 3 11-12-2015 07:07 PM

Sorry msbelle:(
I wish you well !
Have you and or your neuro talked about Rituxin (new type of this med should be out of trial - Ocrilizimab (sp?) My neuro at the RMmsC thinks highly of Retuxin. I am on Tysabri for over 9 yrs-so I'm not changing ;)

Good luck !:hug:
Linda

normand44 12-02-2015 11:19 AM

Quote:

Originally Posted by MSbelle (Post 1129582)
Anyone else taken this or going to take it?

I have a pretty high EDSS (6 or so), and it went up from about 4 in the summer. I'm on Tysabri right now but this is the drug my neuro rec'd as a first line treatment in October (I'm in Canada, it's been approved here longer than it has in the US). We will be paying out of pocket for it since it's not covered by the provinces (other than Quebec) and while some insurance companies cover it (many don't), we don't have insurance.

Would love to hear from anyone who's been on it or who is going to!

I am on it and have been for 7 months, I feel no changes I went to Nero and have started the paper work for Lemtrada.


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