NeuroTalk Support Groups - Who at Braintalk is on Tysabri?

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- - Who at Braintalk is on Tysabri? (https://www.neurotalk.org/multiple-sclerosis/1470-braintalk-tysabri.html)

Great news!

Good luck, and I hope Tysabri works very well for you! :)

Cherie

Quote:

Originally Posted by marcstck (Post 14228)

Had my first infusion yesterday. Have had some flu like symptoms, was told that could be expected. No benefit yet, but it's only been a day.. I'll post with updates...

Hi Marcstck, Good for you..wow...I hope you do well.

Keep us up to date with your progress.

Welcome Home and Hugs,

Yeah. Good luck Marc!

my 1st infusion was the 20th of September,, my next is the 18th of October,, I dunno, have wicked mood swings,, blood pressure dropped,, but back to the norm now,, I feel more punk,, more ambitious,, a lot of folks, who are medicare, { in my town}, with MS are having trouble getting this approved,, and are on stand by,,

I am going to give this a go,, nothing ventured, nothing gained,,

Peg

I am on Tysabri, and LOVING it! Woohoo!

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
__________________
Our todays are only stepping stones for our tomorrows. I am a very proud member of http://www.MSPatientsForChoice.org

Hi Lauren, I remember seeing some of your posts at MSW. I haven't been there for awhile, so I am happy to see that you've had your 1st infusion and that, so far, you seem to like it.:D I hope your next infusion is even better.

I am on, only, LDN and so far (3.5yrs) it's keeping my MS stable with a few improvements. I'm going to stick with my harmless, inexpensive ( 25.00 per mo) LDN. untill they come up with a cure, that won't possible kill you.:eek:

Nice to see you here, and I hope you will keep us up to date on your progress with TYsabri.:)

BTW, whatever happened to the ELN message board? I use to read there, posted a couple of times and saw you there.

Best Wishes Lauren.

Hi Sally! I remember you too..

Quote:

I remember seeing some of your posts at MSW. I haven't been there for awhile, so I am happy to see that you've had your 1st infusion and that, so far, you seem to like it. I hope your next infusion is even better

Thank you so much!

Quote:

I am on, only, LDN and so far (3.5yrs) it's keeping my MS stable with a few improvements. I'm going to stick with my harmless, inexpensive ( 25.00 per mo) LDN. untill they come up with a cure, that won't possible kill you.

I'm glad LDN is working for you :) I was on it for a while... but it lost its efficacy (for me) in 2 mos :/ My odds are better of being hit by a moving bus than coming down with PML-besides, if I did, it would pretty much take care of my MS for me, eh? <---(laughing, j/k ;)).

Quote:

Nice to see you here, and I hope you will keep us up to date on your progress with TYsabri.

Thanks sooo much Sally, ditto...and I will (if I can remember to-lol)..you can also follow my Tysabri diary/progress on my Blog: http://lauren-livingwithms-aolcomlgl....blogspot.com/

Quote:

whatever happened to the ELN message board? I use to read there, posted a couple of times and saw you there.

We all left in a mass exodus.....Yahoo went in the toilet, literally (ugh!)

Best wishes to you too Sally, and to all as well :)

G'night everyone,

Lauren