advertisement
Reply
 
Thread Tools Display Modes
Old 01-19-2007, 10:42 AM #1
ArmyMahmaa ArmyMahmaa is offline
New Member
 
Join Date: Jan 2007
Location: Maine
Posts: 5
15 yr Member
ArmyMahmaa ArmyMahmaa is offline
New Member
 
Join Date: Jan 2007
Location: Maine
Posts: 5
15 yr Member
Question Tysabri


Good morning.
I am looking for information from anyone with MS that has taken or is taking Tysabri.
I am looking to find out your thoughts and/or experiences with this medication.
I have been on Rebif for 3 years now and still average a relapse 2 to 3 times a year. My doc and I are looking at doing the Tysabri. Before I agree I just wanted to find out as much as I could.
I am aware of the episodes from 2 years ago and understand the happenings that caused them.
I just need information from others about Tysabri.
Before I did 5 infusions of Novantrone, I did not do research or ask others about it. I wish I had. My heart didn't take to kindly to it. I have a low ejection fraction, 3 valves regurgitate, and I have a murmur. All which was not there prior to treatment because of the echo done before.
Any information and advice will be so appreciated.
Thanks
Sheila
ArmyMahmaa is offline   Reply With QuoteReply With Quote

advertisement
Old 01-19-2007, 12:26 PM #2
lady_express_44's Avatar
lady_express_44 lady_express_44 is offline
Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
Default

The board that I have run into that seems to have the most positive (but perhaps biased) information about Tysabri is MS World. You might want to read their "new drugs" (or something to that effect) forum.

If you do a "search" "Tysabri" on this forum, you should find some information as well.

Good luck!

Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
.
lady_express_44 is offline   Reply With QuoteReply With Quote
Old 01-19-2007, 06:44 PM #3
Chris's Avatar
Chris Chris is offline
Member
 
Join Date: Aug 2006
Location: Georgia
Posts: 975
15 yr Member
Chris Chris is offline
Member
Chris's Avatar
 
Join Date: Aug 2006
Location: Georgia
Posts: 975
15 yr Member
Default

Quote:
Originally Posted by ArmyMahmaa View Post
Good morning.
I am looking for information from anyone with MS that has taken or is taking Tysabri.
I am looking to find out your thoughts and/or experiences with this medication.
I have been on Rebif for 3 years now and still average a relapse 2 to 3 times a year. My doc and I are looking at doing the Tysabri. Before I agree I just wanted to find out as much as I could.
I am aware of the episodes from 2 years ago and understand the happenings that caused them.
I just need information from others about Tysabri.
Before I did 5 infusions of Novantrone, I did not do research or ask others about it. I wish I had. My heart didn't take to kindly to it. I have a low ejection fraction, 3 valves regurgitate, and I have a murmur. All which was not there prior to treatment because of the echo done before.
Any information and advice will be so appreciated.
Thanks
Sheila
Hello Sheila.
I have experience with Tysabri. I was in the original Antegren studies and was on it along with Avonex as it turned out. I can tell you that after the second infusion of what was then called Antegren, I felt fanatastic. I had much more energy than I've had in years, and it was obvious that I wasn't on the placebo. I was in the study for 18 months until it was aborted in order for Tysabri to be marketable to the general public.

At that time, my husband and I decided to try and get pregnant, so I stopped the Avonex, and opted out of taking the Tysabri. I am still here to talk about it as you can see, and I had a most positive experience with it. We are still trying to obtain a viable pregnancy and I am not on it as of now. Should we opt for another way to have children (adoption), I most certainly will begin taking Tysabri again. I am fortunate enough to live near an MS Center where there is a large infusion room. There were and are many Tysabri patients being treated with it that have had many fine results from Tysbri. I'm sure your Neurologist would be happy to put you in touch with another Tysabri patient if you so desire. I have spoken to several in my area through the Center I go to. The physicians I see have a list of patients who have signed up to serve as advocates for those seeking information about Tysabri.

It is a significant decision to make. If you don't like Tysabri, you don't have to stay on it; just as we were allowed to drop out of the Antegren study if we opted. I support you in whatever you do decide to do.

All the best.
Chris
Chris is offline   Reply With QuoteReply With Quote
Old 01-29-2007, 03:13 PM #4
MS Mommy MS Mommy is offline
Junior Member
 
Join Date: Sep 2006
Location: DC Metro
Posts: 14
15 yr Member
MS Mommy MS Mommy is offline
Junior Member
 
Join Date: Sep 2006
Location: DC Metro
Posts: 14
15 yr Member
Default

I was on Avonex for 4 years and Rebif for 2. I continued to relapse and had other interferon-related problems.

When Tysari came back, I busted through the door to get it. I have had 4 infusions and feel better than I have in over a year. My walking, balance and stamina have all improved.

I have been offered novantrone in the past and declined. I feared the exact problems you experienced. I'm sorry for your troubles.

I tell you about this because it shows that I do not take drugs lightly. I researched Ty and felt confident that the risks of using it as a monotherapy were worth it for me.

I have not been disappointed so far!

HOpe my input can be helpful!
__________________
" Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, wine in the other, body thoroughly used up, totally worn out and screaming "WOO HOO what a ride!"
MS Mommy is offline   Reply With QuoteReply With Quote
Old 01-29-2007, 07:50 PM #5
Harry Z Harry Z is offline
Member
 
Join Date: Sep 2006
Location: London, Canada
Posts: 241
15 yr Member
Harry Z Harry Z is offline
Member
 
Join Date: Sep 2006
Location: London, Canada
Posts: 241
15 yr Member
Default

Sheila,

Quote:
Before I did 5 infusions of Novantrone, I did not do research or ask others about it. I wish I had. My heart didn't take to kindly to it. I have a low ejection fraction, 3 valves regurgitate, and I have a murmur. All which was not there prior to treatment because of the echo done before.
Are you saying that the doc that prescribed Novantrone didn't sit down with you prior to this and advise you of the possible dangers of heart damage?

Harry
Harry Z is offline   Reply With QuoteReply With Quote
Old 01-30-2007, 07:55 AM #6
Pegshere's Avatar
Pegshere Pegshere is offline
Junior Member
 
Join Date: Oct 2006
Posts: 14
15 yr Member
Pegshere Pegshere is offline
Junior Member
Pegshere's Avatar
 
Join Date: Oct 2006
Posts: 14
15 yr Member
Default

Quote:
Originally Posted by ArmyMahmaa View Post
Good morning.
I am looking for information from anyone with MS that has taken or is taking Tysabri.
I am looking to find out your thoughts and/or experiences with this medication.
I have been on Rebif for 3 years now and still average a relapse 2 to 3 times a year. My doc and I are looking at doing the Tysabri. Before I agree I just wanted to find out as much as I could.
I am aware of the episodes from 2 years ago and understand the happenings that caused them.
I just need information from others about Tysabri.
Before I did 5 infusions of Novantrone, I did not do research or ask others about it. I wish I had. My heart didn't take to kindly to it. I have a low ejection fraction, 3 valves regurgitate, and I have a murmur. All which was not there prior to treatment because of the echo done before.
Any information and advice will be so appreciated.
Thanks
Sheila

Hi Sheila..

I have had 5 infusions, thus number 6 the 9th of Febuary,,, do I feel better ?,putting it bluntly no,, but don't let this discourage you from doing it,,

I also was on ReBif, till the insurance gurus jacked the copay up to outrageous numbers..



good luck in any of all decision making..

Peg
Pegshere is offline   Reply With QuoteReply With Quote
Old 02-06-2007, 09:59 PM #7
elliot elliot is offline
New Member
 
Join Date: Feb 2007
Posts: 5
15 yr Member
elliot elliot is offline
New Member
 
Join Date: Feb 2007
Posts: 5
15 yr Member
Default

Hi Army,

I was diagnosed with a pretty nasty case of RRMS in Sept. of 2005. I was on Betaseron until last November when I started Tysabri. I've had three infusions and if anything I've lost ground on it. My sensory symptoms are a bit worse and the distance I can walk has been reduced by a lot. However, I was going downhill slowly before I started the T so it has a lot of catching up to do. But, I really think that I'm SPMS these days and after dose #4 this month, if something doesn't start to turn, I'm asking for Navontrone. I'd love to do that combo of Navontrone and Copaxone if my insurance will cover it.

I don't mean to dash anyone's hope about T. I'm very clearly in the minority. Most everyone with whom I've communicated who are on it love it.
elliot is offline   Reply With QuoteReply With Quote
Old 02-07-2007, 04:17 PM #8
Snoopy's Avatar
Snoopy Snoopy is offline
Magnate
 
Join Date: Sep 2006
Posts: 2,280
15 yr Member
Snoopy Snoopy is offline
Magnate
Snoopy's Avatar
 
Join Date: Sep 2006
Posts: 2,280
15 yr Member
Default

Quote:
Originally Posted by elliot View Post
I was diagnosed with a pretty nasty case of RRMS in Sept. of 2005. I was on Betaseron until last November when I started Tysabri. I've had three infusions and if anything I've lost ground on it. My sensory symptoms are a bit worse and the distance I can walk has been reduced by a lot. However, I was going downhill slowly before I started the T so it has a lot of catching up to do. But, I really think that I'm SPMS these days and after dose #4 this month, if something doesn't start to turn, I'm asking for Navontrone. I'd love to do that combo of Navontrone and Copaxone if my insurance will cover it.

I don't mean to dash anyone's hope about T. I'm very clearly in the minority. Most everyone with whom I've communicated who are on it love it.
Hello Elliot and to NeuroTalk!
__________________
Dx RRMS 1984
Snoopy is offline   Reply With QuoteReply With Quote
Reply


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


Similar Threads
Thread Thread Starter Forum Replies Last Post
Tysabri Talk msladyinca Multiple Sclerosis 115 04-01-2008 08:14 PM
Review of PML and Tysabri pantos Multiple Sclerosis 38 12-02-2006 06:41 PM
Who at Braintalk is on Tysabri? BBS1951 Multiple Sclerosis 26 10-21-2006 09:41 PM
More Tysabri News pantos Multiple Sclerosis 0 10-06-2006 08:52 PM
Tysabri info from ECTRIMS mexigrl Multiple Sclerosis 9 10-02-2006 12:05 AM


All times are GMT -5. The time now is 05:56 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

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.