Are any folks here starting Tysabri?

If so, would you be willing to post about how it is going, whether there are any good changes in your MS symptoms, any side effects?

Hey BBS - How are you doing? I am not on T but going off A finally.
Did you ever resume taking anything after A?

Tina

Tina, Hi and welcome home. Nice to see you again. Long time.

Glad to see you too BBS, but I saw you recently at PT.

Hi SallyC, fellow PTer, and great to see you again September.

Nope, I am going bare: the only treatments I do are Swank and Swim. No abcr drugs for me. I should say I take daily Valtrex to suppress Herpes, but I think research shows Valtrex does not control MS.

I am so done with Biogen. They refuse to take responsiblity for what happened to my lungs. What I think that really means is that they think they could protect themselves if I were to sue them, so there is no need to compensate me for my lost wages, which is all I wanted.

You know, initially their stance was they were not to blame.

Then, Tysabri caused the 3 deaths and suddenly out of the blue I hear from Biogen's attorney and that they are looking into my case again. So, they got all my records, even my lung biopsy slide, and then, two weeks ago, they let me know they take no responsiblity for what happened to me.

There is a special circle in Dante's Inferno for folks like that...

Are you going off of A because of your breathing problems?

Yes..strange thing is that the breathing issues subsided for a while.
New batch..more problems. Doc says go off for 3 months & see if the issues resolve... if so, then I start C.

He asked me about T, I said no way.. the people that died were on A & T.
He said well you would go off A.. I said it would have to be years before I was off A & willing to try T.

Are you still slowly getting better?

I PMd you about me.

I hope that your breathing resolves off of Avonex. Copaxone sounds like a good choice. I"m off of all MS drugs.

I am so cuirous about Tysabri, but I'm not bad enough to try Tysabri. Plus, I dont trust Biogen to be honest about Tysabri side effects. I am so hoping that some of our fellow MSers who are doing poorly will do well on Tysabri though.

I too really look forward to any updates from people on how Tysabri is working for them. I hope it proves to be a really good treatment option for us.

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. 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.

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.