The meal was really good, so I told my dad, I said, "I want to film a
video, because I'm really trying hard to do this every week so you can see the progress of a relapse." My neck is still shaky and every once in a while my eyes will do that optic neuritis, and other things will happen. But I'm walking really well, which is great, so I feel normal, but I still have shaking and you probably can't see it but it's there. So that's how I've been feeling.
I wanted to talk this show all about medication. I've been getting a lot
of feedback, and thank you so much again everybody for writing to me,
because it helps me and I'm trying to answer as many questions as I can,
but if you have a question and I can't answer it, I'll find out.
I can call my doctor, I can look on line, make some phone calls. Please
write to me and I will find out and get you an answer. I wanted to thank
Steve, thank you so much for writing to me and I wanted to talk about
Tysabri, because I know you and many others have a lot questions about
Tysabri.
So I'm going to explain what I know about it, and you can, of course, read
up online or ask your doctor or get some information, but I'll tell you my
experience with it. I feel great. I've had two infusions so far, and I'll
have my third next Saturday on the 28th, the day after my birthday. And
I'm feeling awesome. So I don't know, and Joelle, I thank you for writing
to me too. She and I had a lot of similarities with the side effects from
the steroids and things like that. So we were communicating back and forth
and saying you don't know what causes what, and it's like, "Is this how I
would've been naturally or are the steroids still in my system, or is the
Tysabri helping? What is it?" It's like I don't know, but I feel good, so
that's okay, that's a good thing.
I know Steve, you and many others have questions about Tysabri are the same
questions I had before I took it. In the beginning, before they pulled it
off the market. They took it off the market and the reason they did was
because a few people died from taking Tysabri, and that's initially
frightening. Me, along with everyone else was like, "Why would I take it
if there's a chance of death?"
What happened was the people that died were also on another immuno
suppressant drug. Like one was on chemo therapy, and I'm not sure about
the other two, but, they were also on another immuno suppressant drug. You
can't be on an immuno suppressant drug and take Tysabri, because it messes
up your system. I don't know what it does medically, but that's what
happened.
So when you go in for the Tysabri infusion, which is one time a month,
which is awesome. You sit there with a nurse and she'll ask you several
questions, just because they make sure that you're not on another immuno
suppressant drug. Usually it takes about a half hour to get through the
questionnaire, and then they put the needle in. For me, they used my arm.
They can use your hand or whatever, but then the actual infusion takes an
hour. Takes one full hour and then after the infusion, you have to wait
for an hour. They stop running it then you wait, and just to make sure
that your body doesn't have any reactions to the medication.
So that's kind of what happens. And if you look, I show in some of my
videos. If you look back, I don't know how many weeks now. If you look
back you can see me getting my first Tysabri infusion. So you know exactly
what it looks like and what they do, and you can see it. I just wanted to
let you know that it's... Don't be scared about the people in the first
group that took it and passed away, because they didn't know they were,
what do you call it, Dan, in the beginning.
Dan: Test, test people.
Lauren: Like test patients, guinea pigs or whatever. So don't be afraid.
I was communicating back and forth with Joelle about how, right now we're
both kind of at the position where we don't know what is causing our bodies
to do what. It's like, "Are the steroids still in my system, or is the
Tysabri really helping me out, or is this just how I would've been
naturally?" Who knows? It's like you just have to go with the flow, take
it one day at a time and, maybe in eight months, nine months I'll be able
to tell exactly how the Tysabri is working.
But I'm functioning really well.
Dan: You got three minutes, and you were going to talk about how the other
injections were.
Lauren: Okay, I gosh, I always go too long. Real quickly, I only know one
other person on Tysabri, and she's doing extraordinarily well. So I say go
for it, talk to your doctor, and if you think you need to switch
medications, give it a try.
I was originally on Copaxone, and for me, I had horrible site reactions.
And if felt like I got stung by a bee every single day. And then I showed
progression in my MRI's, so Copaxone didn't work. Then I was on Betaseron,
and I was on that for four years, and it did fine for me, but that's when I
started having my relapse in July. And so my doctors said, "I think it's
time for you to switch medications," which is when I started the Tysabri in
August I believe, so, if you feel like your medication isn't working. Talk
to your doctors, talk do them. Do your research, look online, go to the
library, go to the hospital. Do whatever you can. All I know is that
every person I've heard of that is on Tysabri is doing very, very, well.
So that's pretty much all I have to say.
Dan: You have about two minutes. You might mention how far away you're
getting correspondence.
Lauren: I'm so excited about all of the people that are writing. Thank you
so much, too. I'm sorry I forgot your name, but there's some man from
Israel who saw my videos on Youtube, and they're people from all over. I'm
just so excited I could scream. I'm serious if you have questions, please
write to me. I will answer you, and if can't answer, if I don't know, I
can research and find out.
I'm showing what this relapse was like and the Tysabri it all happened at
once. Like my relapse and new medication, I'm trying to show you. So I
know, Joelle, said that you could relate to a lot of stuff that you were
seeing, and the emotions, it's like oh my gosh, you're not alone. We are
all in it together.
So write to me, I will respond, and hopefully, I'll be hearing from you
soon, and I'll be doing a video next week, maybe on my birthday, maybe not,
we'll see. But I hope you have a wonderful Christmas. Merry Christmas,
and happy New Year if I don't do a video. But I will see you next week,
bye.
