Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Saturday, April 14, 2007

My Tysabri Diary...

Another young lady named Shannon posted a comment on my Blog....hey Shannon~! I posted a comment on your Blog "http://dissonanceink.com/blog", under Tysabri or not Tysabri, but I don't see it there.

Dearheart, there is no need to be terrified of Tysabri, honest...I'll tell you the same thing I told another young lady named Brooke, that also previously left me a comment that she was also scared of Tysabri,
which by the way, she isn't anymore! :)

Shannon, please write to me and give me your email address so that I can correspond with you and try to calm your fears, okay? My email address is LGLBGL2003@AOL.COM.

If you feel uncomfortable writing to me, I'll try to help you here:

1. First, take a couple of deep breaths and calm yourself down, there is no need to panic and no need to be terrified, stressing like this might lead to a relapse, and none of us want that, right? Right! :)

2. I'm not worried in the least about PML. Experts believe it's caused by a dimished (very low) immune system...and I'm not on any other strong immune suppressants or immunomodulators (like the ABCR's), which could lower my immune system and cause PML. I'm just on Tysabri...Furthermore, MS patients in general have a very strong and highly active immune system to begin with - which is why we keep having relapses! ;)

3. If
you're still terrified of PML (Progressive Multifocal Leukoencephalopathy), think about this for just a minute: there were 3 trial patients that developed PML: 2 pts. when using Tysabri in combination with Avonex (another immunomodulator), and 1 Crohn's pt that had a previous severely compromised immune system due to being on Azathoprine for 6 years. Of these 3 pts, 2 died, and neither of them had MS.

This means that out of approx. 3,000 trial pts that had a confirmed dx of MS, that did not have a compomised immune system, and received Tysabri as a monotherapy (by itself), and the approx. 5,000 general population pts that also met the above critera (me included) from 11/04 to 2/05, that's 8,000 pts. total, plus the additional approx. 6,300 patients that have received Tysabri since it's relaunch in 2006 (with the same above criteria) - that's a grand total of 14,300 patients - and get this: not one of us developed PML and died - which is a risk factor of
zero in 14,300 or 0:14,300!

So please don't be afraid of Tysabri - discuss it fully with your neurologist that is knowledgeable about Tysabri.

Dearheart, you are close to the same age I was when I was first dx'd with MS (I was 22 then - I am now 52 (yikes!), so you are young enough to be my daughter or my little sister. And if this were the case, I would sit you down (just like I did with Brooke and too many others to mention), wrap my arms around you and give you the biggest hug you ever had - and look right into your eyes and tell you firmly but gently the God's honest truth, "It is going to be okay - you have nothing to fear but fear itself - and you are not alone."

And that goes for all of you out there too! ... Let not your heart be troubled.

(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org

8 Comments:

  • At 5:37 PM, Anonymous Anonymous said…

    Lauren: I always appreciate the way you use facts to be up-front about the use of Tysabri. Though I was convinced about it's efficacy prior to reading your latest message, I was truly reassured by your most recent words and logic.

    Thanks again for being there for the many others who continue to need that reassurance.

    Hope you are enjoying the spring!

    Deb

     
  • At 7:30 AM, Anonymous Anonymous said…

    Lauren,
    I have always been a believer in the theory "everyone with MS has to choose which therapy works for them and they are comfortable with". Based on that, I haven't tried to sway anyone towards Tysabri but have just explained my own positive experience. This past week I got together with a friend that I used to do volunteer work with at the Natl MS Society. We hadn't seen each other since last fall. His decline was very obvious to me as was my improvement to him. He told me his doctor had not even mentioned Tysabri to him and that I was the only person he knew who was taking it; everyone in his support group was afraid to. I think that some neorologists who dont want to bother with the Touch program thats required or just plain don't want to get into the infusion business are neglecting to offer Tysabri to their patients. Thats just plain cruel. I am going to make sure everyone who knows me and knows someone with MS is more aware of the truth about Tysabri in hopes that they will realize the possibility that they can have more control over their future health. Thanks for all you do.

    Penny

     
  • At 6:23 PM, Blogger CC said…

    Hey Lauren,

    I am going to post part of your entry on my blog. This may ease the concern of some of my family members.

    Best,
    Courtney

     
  • At 6:21 AM, Anonymous Shannon said…

    Lauren,

    Thank you so much for taking the time to post that...it really did make me feel better :D

    I don't know why their Patient Info Brochure is so needlessly frightening!

     
  • At 2:04 PM, Blogger Lauren said…

    Thanks so much Deb, words of encouragement like yours keep me grounded and determined to keep the truth about Tysabri out there!

    (((((hugs)))))

    Lauren :)

     
  • At 2:13 PM, Blogger Lauren said…

    "I think that some neorologists who dont want to bother with the Touch program thats required or just plain don't want to get into the infusion business are neglecting to offer Tysabri to their patients. Thats just plain cruel." Yes Penny, it is doubley cruel when the patient suffers ongoing relapses with accumulating permanent disabilities :(

    Keep on keeping MSers educated I say...it's our choice and our right!

    Lauren :)

     
  • At 2:16 PM, Blogger Lauren said…

    I saw it Courtney - feel free anytime! (Unless I state otherwise, of course - heehee)

    Lauren :)

     
  • At 2:22 PM, Blogger Lauren said…

    Awww Shannon, dearheart, I'm so glad :)..."I don't know why their Patient Info Brochure is so needlessly frightening", perhaps the FDA will lift the marketing restrictions and BB warning on Tysabri soon...we can all hope - right?

    Take care now, Lauren :)

     

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