Switching to Lemtrada

[sugarcookie]

Hello,

My dr and I have decided to make the switch to Lemtrada. I see that there is not a ton of activity on this message board and I was wondering if anyone knows about a Lemtrada online group where I might be able to get information and share experiences with other Lemtrada users.

Or maybe it's just too soon for this group to be busy and everyone is waiting quietly for the web traffic to show up

I have been on Copaxone, Avonex, Tysabri, Gilenya, and then 18 months of nothing while we waited for Lemtrada to be approved late 2012/early 2013. I went on Tecfidera when it was approved and I've tolerated it better than many others but I just feel sick and tired all the time and getting worse the longer I'm on it.

I'm excited and nervous to make the change and am hopeful that this will be the one that works for me and I would love to find people who can share their experiences and maybe help calm my nerves when the time comes.

My dr said that I need to stop the Tecfidera, get a good skin exam and then we'll do some additional blood work closer to my start date. She said that I should be able to start treatment within a month's time. Lemtrada for Christmas!

[Mable]

Sugar cookie,

I think it's too early for many people in the US to have had a lot of experience with the drug.

That makes you a pioneer!

You probably already have found David's Campath Story and Emma's Lemtrada.blogspot pages on line. You might also like the documentary "The Story of Campath 1H." And you can read everything on this website from Spacedive, an early user. The MS Research blog has a lot about alemtuzumab too--they're big fans, I think.

My neuro told me he would give it to me when approved, but that was before we knew it would be a 3rd-line drug. I may need to fail another drug before I can use Lemtrada. Nearly everyone who takes it seems to love it, but I'm also really nervous about it.

I hope you'll come back frequently and tell us how it goes for you.

[69Mustang]

Hi Sugar Cookie,

I love your name- my favorite kind of cookie!

I traveled to Germany this year for Lemtrada and also love it like Mable says.

If you want to see my experiences you can read the blog. The moderators of the site will delete it if I post it here. They are very strict about that.

Bit I am happy to answer any questions. I am about 7-8 months out from Lemtrada treatment and have been diagnosed 11 years. Now I feel as though I don't have much to complain or worry about when it comes to MS.

Lemtrada is pretty amazing stuff.

Good luck in your journey,
Take care,
Emma

[PressingOn]

My doctor has also approved me for Lemtrada. I have two failed therapies. I have no idea when I will actually start because it is new and all the pre testing and such.

I have really enjoyed reading Emma's blog. There is a ton of info on there. I am excited to start this journey.

I do have one thing I am curious about. I know about the quarentind and why. I was wondering if Lemtrada patients could get the shot Neulasta like after chemo to help with not getting sick. I have three kids, two in school, so I will still be exposed to lots of germs even at home.

I am glad there are places like this to share experiences!
Thanks!

[BadAttitude]

Emma, I just checked out your blog for the first time and the last entry seems to have been in April. So spill it, Emma: Did you move to a new blog space? How are you doing now that we're in July?

OP, have you received Lemtrada yet? What about you, PressingOn?

Dish, kids.

I'm doing well, myself.