Starting Lemtrada soon
 

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!

Wow MSBelle, I'm sorry that no one has responded to you here yet. I don't
know if any one here is on "L", but I say, good luck to you and good wishes
for a successful outcome for you and "L".

I'm sorry for your progression and hope that L" slows that down.:hug:

It was just approved here in December. I imagine many neurologists are taking a wait and see approach with this one since it is a relatively new drug and there are oral medications that they can try. Good luck!

Well I had all my baseline tests done on Friday. My 3rd and final Tysabri infusion is this Friday, and as long as all the tests come back ok, I'll be starting Lemtrada at the end of April hopefully. Need to round up the money somehow... where there's a will there's a way, right?

Good luck and I really hope it works for you. :) Why are you going off Tyaabri so soon?

I took a look at their website and the side effects seemed pretty scary to me. No wonder neurologists are waiting. It looks like a drug of last resort.

https://www.lemtrada.com/

Good luck - I hope it rings you a lot of relief from all that you are going through. I will be very interested to hear how it all goes.

If you'd told me a year ago I'd be considering Lemtrada I'd have told you you were nuts. I avoided DMDs like the plague, even the interferons and Copaxone scared me! Tysabri? No! Lemtrada? HELLS NO.

Then MS gets aggressive and all of a sudden you're trying to make the choice between HSCT with chemo so bad it will mean isolation for months and no hair, or Lemtrada which is a chemo drug as well. And begging for them. I'm paying out of pocket, just got the numbers yesterday, and we're going to have to remortgage our house.

Gives you an idea of how I'm doing.

Here are some helpful youtube links that quickly help understand alemtuzumab (Lemtrada)

https://www.youtube.com/watch?v=7MQkbgqUlZ0

And the risk of thyroid disease:
https://www.youtube.com/watch?v=Lik8PyTCc8Y

Sheesh MSBelle, won't the Lemtrada makers foot some of that bill?

SallyC- I'm working with Genzyme now to try and get that to happen. They're really not helping many people from what I've heard though. I'll be lucky to get help with anything more than 20%.

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.

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

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

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.