Hi everybody. I have I guess you could say bittersweet news today. I'm going to start with the sweet news, and that is it is exactly one year since I got in my rollover car accident and was in the hospital when my relapse first began because I was in that horrible car accident. It's been a year, I had my relapse, I'm better, I'm over it, I'm on a new medication, and I feel fabulous. That's the sweet news. I feel great. I prayed to God. I said, "Just let me be okay in one year," and here I am. I'm okay, and I'm very grateful. So, that's the good news.
Now, this next part is something that I think is very important. It is
about how there have been two confirmed cases of PML in Tysabri patients. I
want to make this very clear, because I know that it can be really scary
and really terrifying to hear about, read about, whatever.
I participated in a teleconference with people from Biogen Idec, and I
would like to relay the information that I received from that phone call so
that you have accurate information. What happened was on July 30th and July
31st, the confirmed cases of PML in patients that were taking Tysabri were
in the European Union. The first patient was on monotherapy, which means
they were only taking Tysabri, for 17 months. They are currently clinically
stable and are at home. The second patient was also on Tysabri as a
monotherapy for about 15 months, and they are currently hospitalized. But,
they are both alive and they are both getting treated.
They were both closely monitored by physicians while being on Tysabri, and
they had signs and symptoms of PML. My question was, what were those signs
and symptoms. How did they know that it was PML?
The whole thing about the TOUCH program... At least in the United States,
we have the TOUCH program. You can only get Tysabri through the TOUCH
program. The whole purpose of it is to monitor your process of taking
Tysabri. Before you can even get the IV in your arm, you have several
questions that you have to answer.
I've talked about this before in some of my videos, but you sit there and
wherever you get your infusion you sit with a nurse or whoever and they ask
you several questions. Have you noticed any changes in your vision? Have
you noticed changes in your balance? In your eating? In your health? In
everything, have you noticed any differences? If you don't report it that's
not good, because that's what the TOUCH program is for. They're looking for
changes in your health which could potentially lead to PML.
Now, doctors still recommend Tysabri, because at the end of June 2008 more
than 31,800 patients worldwide were on Tysabri. In the US, more than 17,800
people were on Tysabri. Outside the US, more than 13,000 patients were on
Tysabri. At the present time, doctors believe that the benefit risk profile
remains favorable for taking Tysabri.
Again, like I said, I was really scared. How did they even know it was PML?
Well, you have to be really cautious. You have to be really careful. You
can't do anything that they tell you not to do. You can't take another MS
drug while you're on Tysabri. You can't take another immunosuppressant drug
while you're on Tysabri.
For me, it's worked out extremely well. I called my neurologist right away,
and I asked Dr. Cullis. I said, what do you think. Because he had heard
about it. He said, you know what Lauren, you have improved so well and you
are doing so extremely well on Tysabri. He said, two people out of, what's
that number again? 31,800 people. That's a very small percentage, and if we
start seeing any differences in your health or you start having minor
symptoms that are bad or that are different then we'll go from there. But
for now, he said, you're doing so well that I have no reason to take you
off of Tysabri.
It was a huge sense of relief for me, because I love Tysabri. I just feel
so wonderful, and I haven't felt this great in a really long time. I'm
really not scared of getting PML, I'm really not at all. Because I do
everything they tell me to do and I'm feeling great.
