Home Menu

Site Navigation



NeuroTalk Support Groups > > >

Who at Braintalk is on Tysabri?

Reply
Page 1 of 2 1 2
 
Thread Tools Display Modes
Old 09-24-2006, 02:18 PM #1
BBS1951 BBS1951 is offline
Member
  
Join Date: Sep 2006
Posts: 474
15 yr Member
BBS1951 BBS1951 is offline
Member
 
Join Date: Sep 2006
Posts: 474
15 yr Member
Default
Quote:
Originally Posted by september1968 View Post
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

Are you going off of A because of your breathing problems?
BBS1951 is offline   Reply With QuoteReply With Quote
Old 09-24-2006, 08:24 PM #2
september1968 september1968 is offline
New Member
  
Join Date: Sep 2006
Posts: 4
15 yr Member
september1968 september1968 is offline
New Member
 
Join Date: Sep 2006
Posts: 4
15 yr Member
Default
Quote:
Originally Posted by BBS1951 View Post
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?
september1968 is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 05:27 PM #3
BBS1951 BBS1951 is offline
Member
  
Join Date: Sep 2006
Posts: 474
15 yr Member
BBS1951 BBS1951 is offline
Member
 
Join Date: Sep 2006
Posts: 474
15 yr Member
Default
Quote:
Originally Posted by september1968 View Post
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.
BBS1951 is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 10:47 PM #4
wannabe wannabe is offline
Member
  
Join Date: Aug 2006
Location: in MS land
Posts: 186
15 yr Member
wannabe wannabe is offline
Member
 
Join Date: Aug 2006
Location: in MS land
Posts: 186
15 yr Member
Default
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.
wannabe is offline   Reply With QuoteReply With Quote
Old 09-26-2006, 08:03 PM #5
marcstck's Avatar
marcstck marcstck is offline
Junior Member
  
Join Date: Sep 2006
Location: NYC
Posts: 65
15 yr Member
marcstck marcstck is offline
Junior Member
marcstck's Avatar
 
Join Date: Sep 2006
Location: NYC
Posts: 65
15 yr Member
Default
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...
marcstck is offline   Reply With QuoteReply With Quote
Old 09-27-2006, 01:28 PM #6
1942Linda 1942Linda is offline
Junior Member
  
Join Date: Sep 2006
Posts: 11
15 yr Member
1942Linda 1942Linda is offline
Junior Member
 
Join Date: Sep 2006
Posts: 11
15 yr Member
Smile I Am Ready!!!
i've been approved but have to wait another 6 weeks (from total 3 months) to get oral cytoxan out of my system.

cant wait. just got thru 3 day ORAL SOLUMEDROL to get over bad flare brought on by stress of travel and mother's death and all that goes with that. happy to say treatment worked and systems back to usual bad but tolerable.

cant wait to get started on Tysabri. have lost too much already. left RRMS years ago. Specialist says i am great candidate....i am excited to get going.
1942Linda is offline   Reply With QuoteReply With Quote
Old 09-27-2006, 05:06 PM #7
BBS1951 BBS1951 is offline
Member
  
Join Date: Sep 2006
Posts: 474
15 yr Member
BBS1951 BBS1951 is offline
Member
 
Join Date: Sep 2006
Posts: 474
15 yr Member
Default
Rest up,, Linda. I am sorry about the loss of your mom.
BBS1951 is offline   Reply With QuoteReply With Quote
Old 09-30-2006, 03:13 PM #8
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
  
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default
Quote:
Originally Posted by marcstck View Post
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,
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
Old 09-30-2006, 07:46 PM #9
Matt Matt is offline
Junior Member
  
Join Date: Aug 2006
Posts: 23
15 yr Member
Matt Matt is offline
Junior Member
 
Join Date: Aug 2006
Posts: 23
15 yr Member
Default
Yeah. Good luck Marc!
Matt is offline   Reply With QuoteReply With Quote
Old 10-21-2006, 06:51 PM #10
msladyinca's Avatar
msladyinca msladyinca is offline
Junior Member
  
Join Date: Oct 2006
Location: So. Calif.
Posts: 11
15 yr Member
msladyinca msladyinca is offline
Junior Member
msladyinca's Avatar
 
Join Date: Oct 2006
Location: So. Calif.
Posts: 11
15 yr Member
Default 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
__________________
Our todays are only stepping stones for our tomorrows. :

Please feel free to visit my blog: Living with MS (My Tysabri Diary)
.
I'd love to hear from you!
.
Last edited by msladyinca; 10-21-2006 at 06:53 PM. Reason: typos
msladyinca is offline   Reply With QuoteReply With Quote
Reply
Page 1 of 2 1 2

« Previous Thread | Next Thread »

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


All times are GMT -5. The time now is 01:19 AM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

All posts copyright their original authors.

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.

Always consult your doctor before trying anything you read here.

Home