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- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Tysabri Talk (https://www.neurotalk.org/multiple-sclerosis/4402-tysabri-talk.html)

Hi all, I'm new here and my name is Lauren. I have had MS for 30+ years. 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 28 years, up until last year when my neuro upgraded me to SPMS with relapses.

I just had my Tysabri infusion (restart) on 10/16/06 and I am SOOO relieved to be back on Tysabri, as it is the only MS therapy that has stopped my attacks, improved my symptoms dramatically within 2 weeks of the 2/05 infusion, and provided me with a better QoL. Since I now have more severe disabilities that were the result of further relapses due to not having Tysabri until recently (YAY!), I know my improvements may not show until my 2nd, 3rd, or even 4th Tysabri infusion...BUT get this: the day after my infusion, on Tuesday morning, 10/17, early in am, my caregiver noticed my balance when I was sitting up in my w/c (I did not have to hold on to the arms as much today to sit up) which is about a 60% improvement from yesterday, and I could move my toes very slightly (I haven't been able to do that for months!)...it's was not much improvement, but I was thrilled nevertheless. I wasn't expecting anything so soon...THEN, 5 days after my Tysabri infusion...today being Saturday, 10/21...I lifted my right foot about an inch off the ground by just thinking it to move, and I moved my left foot forward about an inch too! I started crying tears of joy as I had not been able to move my feet or legs at all since last year, 6/5/05! I could only do this one time, but THANK YOU GOD, I'LL TAKE THAT ONE TIME IMPROVEMENT!!!! I just pray I can do this more and more with each passing day. I'm making very small, slow improvements, but improvements just the same, WOOOHOOO!

I can hardly wait until my next infusion...., but no matter what your choice of therapy is, I will support your choice.

I testified at the FDA AC hearing on 3/7/06, in an effort (along with many other MS'ers) to bring Tysabri back to us an added therapy in the arsenal of medications used to fight our MS..you can view my videotaped testimony at: http://www.mspatientsforchoice.org/videocenter.htm and then clicking "Lauren's Video". There is also a really cool (short-3 min) video there that shows "How Tysabri Works".

In a nutshell, Tysabri's 68% superior efficacy, safety when used as a monotherapy, improvements in QoL (which no other MS drug can claim), for me, the benefits far outweigh the very small risk 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. See http://www.biogen.com/site/home.html , http://www.elan.com/, and/or http://www.tysabri.com/touch.html.

Actually, out of 3,000 trial pts and 5,000 gen. population pts (between 11/04 and 2/05), that were confirmed MS pts with non-compromised immune systems that received Tysabri as a monotherapy (me included), not one single patient developed PML...that's right, ZERO PML cases or a risk factor of 0:8000.

Tysabri = to shelter (abri in French). Any of you can email me at LGLBGL2003@AOL.COM, if you have further questions re: Tysabri, or you can ask me here. You can also visit my homepage at: http://hometown.aol.com/lglbgl2003/m...e/profile.html .

Whatever any of you decide to do, I wish you only the very best that life has to offer.

Lauren :)

Hi Lauren,

I hope you get great results from Tysabri. You deserve a break! Please keep us updated on your progress, I hope you get spectacular improvement.

I have a doctor appointment on Monday, and I'm going to ask my doctor about it.

I'm on Copaxone and not doing so great. I tried Avonex and Rebif too. He might want me to try one of those again, but I had bad side effects from Rebif... and not so great results from Avonex.

I sometimes think I might be better off on no treatment, then I might not need all these extra side effect meds.

I hope you will have renewed energy soon and too busy to update us.

Hello Lauren!

Good to see you here.

As always - I'm wishing you the very best with Tysabri.

Hi Ewizabeth, thank you.....and....

Quote:

I sometimes think I might be better off on no treatment, then I might not need all these extra side effect meds.

nooooo, dear....just because you "feel" better off meds, doesn't mean you won't have "silent" lesions forming...

The Tysabri label 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."

Quote:

I have a doctor appointment on Monday, and I'm going to ask my doctor about it.

I pray your neuro is smart enough to see you are failing the older MS meds and gives you the opportunity to experience the best MS med in over a decade!

Best of luck tomorrow,
(((hugs)))
Lauren

Hi Lee Ann!

Small world! haha, thank you honey :)

((((((hugs)))))
Lauren

Quote:

Originally Posted by msladyinca (Post 29152)

It doesn't always hold true, Lauren, There may be no lesions on MRI, with many symptoms and great disability, and then there may be many lesions with no disability.

But, if Tysabri does lower the risk of exacerbations, that has to be a good thing. It does have a (what did XO say) 10% better efficacy rate at reducing exacerbations, than the CRABS.

The Jury's still out on it being better than fried rice, though, since, just like the crabs, the majority of PWMS will not respond favorably to Tysabri.

Good luck and Best Wishes,

Am I close on that, XO?:rolleyes:

Wow Sally, not even close but, thank you for your post...

Quote:

There may be no lesions on MRI, with many symptoms and great disability, and then there may be many lesions with no disability.

I did not say "are not" silent lesions forming, I said "does not mean there won't be", as anything is possible with MS, i.e., nothing is "concrete"....you are actually talking "apples and oranges"; when I was going by what Ewizabeth stated:

Quote:

I'm on Copaxone and not doing so great.

which "implies" she is having more lesions causing more symptoms (lesions are the scarring that is interrupting the nerve signal due to myelin loss/damage", thus the disability.
http://www.nationalmssociety.org/What%20is%20MS.asp

Quote:

But, if Tysabri does lower the risk of exacerbations, that has to be a good thing. It does have a (what did XO say) 10% better efficacy rate at reducing exacerbations, than the CRABS...

Not sure if you are terribly misinformed or what Sally, but please, let me enlighten you re: Tysabri....there is no if when it comes to it's proven 68% superior efficacy...here is the New England Journal of Medicine's (where some of the most highly respected unbiased medical opinions in the worldopined: "Results Natalizumab reduced the risk of sustained progression of disability by 42 percent over two years (hazard ratio, 0.58; 95 percent confidence interval, 0.43 to 0.77; P<0.001)....Natalizumab reduced the rate of clinical relapse at one year by 68 percent (P<0.001) and led to an 83 percent reduction in the accumulation of new or enlarging hyperintense lesions, as detected by T2-weighted magnetic resonance imaging (MRI), over two years (mean numbers of lesions, 1.9 with natalizumab and 11.0 with placebo; P<0.001). There were 92 percent fewer lesions (as detected by gadolinium-enhanced MRI) in the natalizumab group than in the placebo group at both one and two years (P<0.001)." Volume 354:899-910 March 2, 2006 Number 9

Furthermore...

Quote:

The Jury's still out on it being better than fried rice, though, since, just like the crabs, the majority of PWMS will not respond favorably to Tysabri

Wrong again Sally, see the PROVEN DATA recently released: TYSABRI® Demonstrates Improvement in Cognitive Function (http://www.elan.com/News/full.asp?ID=910099); TYSABRI® Demonstrate Significant Reduction in Steroid Use and Hospitalizations (http://www.elan.com/News/full.asp?ID=913012; TYSABRI® Has Sustained Effect on Relapse Rate for up to Three Years (http://www.elan.com/News/full.asp?ID=910437); TYSABRI® Improves Quality of Life (http://www.elan.com/News/full.asp?ID=840112).

Kinda difficult to argue with proven data, Sally..plus I happen to like "fried rice" alot, and I'd venture a guess that alot of others do too! ;)

Best wishes to you also.

Lauren

Quote:

Originally Posted by msladyinca (Post 29460)

Wow Sally, not even close but, thank you for your post...

Not sure if you are terribly misinformed or what Sally, but please, let me enlighten you re: Tysabri....there is no if when it comes to it's proven 68% superior efficacy...

Wrong again Sally, see the PROVEN DATA recently released

Kinda difficult to argue with proven data, Sally..plus I happen to like "fried rice" alot, and I'd venture a guess that alot of others do too! ;)

Lauren

I'm not as "Misinformed" as you think I am, Lauren.:rolleyes:

Read the thread link below, especially what XO, Our resident Trial Study Guru, and re-inform yourself.:)

http://neurotalk.psychcentral.com/showthread.php?t=2333

Quote:

I'm not as "Misinformed" as you think I am, Lauren.

Read the thread link below, especially what XO, Our resident Trial Study Guru, and re-inform yourself

Been there, done that, and please don't roll your eyes at me or the published data (that borders on rudeness)..and I don't need to re-inform squat, you are more than welcome to believe whatever TRIAL guru opinions you want to, but if you start posting falsehoods, as in your ealier post, I won't hesitate to point them out for ALL to see.

Good evening to you.

Lauren

Lauren,

I saw my neuro today and he said I could have Tysabri if I wanted it, but he offered me other options too. I am going to test for the Tovaxin trial and hope to be accepted into it.

Another option he offered was double Copaxone, which has showed good results in a recent trial, so if I don't get into the trial I might take that route.

I hope you do really well with Tysabri, keep us posted!