Living With MS

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

Monday, August 21, 2006


Hi all, My name is Lauren. I have been living with MS for 30+ years (lucky me!). I have been on Avonex and Copaxone, oral and IVSM (which no longer work for me) and Novatrone is not an option for various reasons. I had one dose of Tysabri in early 2005, and after it was removed voluntarily by the manufacturers, I suffered a severe relapse in June 2005 that has left me w/c bound and homebound. I was RRMS for 29 years (I was amazed and grateful I remained RR for so long, my neuro was shocked and baffled-lol) up until last year when my neuro upgraded me to SPMS with relapses. I am currently waiting to go back on Tysabri, as it is the only MS therapy that stopped my attacks, improved my symptoms dramatically within 2 weeks of the infusion, and provided me with a better QoL. It was re-launched on 6/5/06, and the TOUCH program went into effect on 7/18 (scheduled training of neuros and infusion centers) with enrollment forms being accepted and processed by Biogen on 7/19.

I will support anyone's choice of MS therapy, no matter what that choice is. I would, however, like to set the record straight due to any misconceptions and/or mis-information regarding Tysabri. I also testified at the FDA AC hearing via videotape on 3/7/06 in an effort to bring Tysabri back to MS sufferers that want and need it, like I do. If you would like to view my videotaped testimony (try not to die laughing, ok? LOL), it's on the homepage of the website: http://www.mspatientsforchoice.org/ (of which I am a very proud member).

In a nutshell, for me,Tysabri's 68% superior efficacy, improvements in current disabiities, safety when used as a monotherapy (by itself as a sole therapy), improvements in Quality of Life (which no other MS drug can claim) and protection from further relapses: the benefits of Tysabri far outweigh the very small risks of contracting PML (.01% or 1:1000-probably less than that, actually). It is more of a risk for me NOT to have Tysabri, as Tysabri protected me from further attacks/relapses.

For more information on Tysabri, see http://www.biogen.com/site/home.html , http://www.elan.com/, and/or http://www.tysabri.com/touch.html.

As to Tysabri being used as a First Line AND/OR Second Line therapy, NOTE: Dr. Richard Katz of the FDA specifically indicated in his Conference Call that the language in the FDA formal statement re: Tysabri's use was to be decided by the treating doctor and the patient (as it should be) and the FDA's formal statement[1]was intentionally left open for indications of use as First AND/OR Second line therapy. In order to bolster this argument, I highlight in bold the text from the FDA approved label for Tysabri which states in part, "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."

[1] http://www.fda.gov/bbs/topics/NEWS/2006/NEW01380.html

Tysabri = to shelter (abri in French). Is that the perfect name for a MS drug that "shelters" patients from further relapses & disabilities, or what? :)

If you have a neurologist that has taken a "Wait and See" attitude, ask yourself, "What is he/she waiting for? For you to get worse???

For any MS patient or treating neurologist reading my comments, I ask you this question: If "Time is Brain", why are neurologists willing to allow their patients to suffer relapses, increased likelihood of further lesion load, possible permanent disability and possibly develop "black holes" therefrom, BEFORE they will prescribe Tysabri to protect their patient by 68% or 2/3rds efficacy over the 1/3 possible efficacy of the ABCR's?

Please feel free to leave me a comment. I do try to check my blog site daily (today is the first day of my blog, as literally created my first entry here late late late night (did I mention late?). You can also reach me at: LGLBGL2003@AOL.COM, (the Legal Beagle...laughing). You can also visit my homepage at: http://hometown.aol.com/lglbgl2003/myhomepage/profile.html.

I plan on keeping a diary here, once my infusions start. Right now though, I am going through the "Tysabri Saga" of endless delays and run-arounds, in addition to having difficulties typing. I will try to update it daily, but if you do not see new posts from me (from time to time), you'll know why.

Being diagnosed with MS is not the end of the world (at the time I was dx'd in 1976, it came pretty dayum close though!!!). Whatever any of you decide to do re: your choice of therapy, I wish you only the very best that life has to offer. May you always be blessed, Lauren.


I am a very proud member of: http://www.mspatientsforchoice.org/


additional links:

My Home Page: http://hometown.aol.com/lglbgl2003/myhomepage/profile.html

MSPatientsForChoice: http://www.mspatientsforchoice.org/

WLF Published Legal Opinion Letter: http://www.wlf.org/upload/051906robertsLOL.pdf

Tysabri Info & The TOUCH Program: http://www.tysabri.com/touch.html

Elan (Discovered Tysabri) & QoL News: http://www.elan.com/News/full.asp?ID=840112

What Is Multiple Sclerosis?: http://www.nationalmssociety.org/What%20is%20MS.asp

MS Chatters (TONS of Links about MS): http://www.nytedancer.com/MSChat/index.html

National Patient Advocacy Foundation:http://www.patientadvocate.org/index.php

4 Comments:

  • At 8:52 AM, Blogger Corleyone said…

    Hi Lauren. Your blog looks great! It's quite obvious that you're a go-to person when it comes to Tysabri info. Perhaps Biogen should send their sales & CS reps here for a refresher training course, LOL.

    Wish you all the best in getting your first infusion appointment set-up.

     
  • At 5:16 PM, Anonymous Anonymous said…

    Hi Lauren!! I read about you on Remedyfind...very interesting. MSwise, we have alot in common...I am 55 years old,,,had my 1st exacerbation when I was 18...diagnosed at 20, so I've been living with it for 37 years.
    At first, I only got ACTH as needed. I was on Avonex 4-5years and then Tysabri for 2 month until it was pulled. I then went on Rebiff and am considering going back to Tysabri in Dec. when I see my Neuro. Your bio was very helpful to me cause right now I feel great and could easily stay on Rebiff. Your positive points on Tysabri are well-taken. You convinced me to go back to it if I can. I also felt great with Tyaabri when I was on it.

     
  • At 2:04 PM, Blogger Brooke has MS said…

    Hi lauren,
    My name is Brooke and I am 22 I was dx almost 3 years ago and I have already taken Rebif(which caused bad dreams) Copaxone(I thought was great but a MRI showed different) I am getting my second infusion of Tysabri April 2nd. i am not noticing a huge difference....Except i am so tired...I dont know if it is the Timechange or the weather getting hotter but I havent noticed alot of difference. I am wondering if you are still very happy with Tysabri? Do you worry about PML? Sorry if you dont want to answer that. But I am really scared!

     
  • At 3:47 PM, Blogger Lauren said…

    Awwwwwwww, (((((Brooke)))))), don't be afraid honey - read my latest entry on my Blog, it's for you dearheart :)

    Lauren

     

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