advertisement
Closed Thread
 
Thread Tools Display Modes
Old 01-31-2008, 07:55 PM #1
Curious Curious is offline
Yappiest Elder Member
 
Join Date: Aug 2006
Location: Texas
Posts: 13,418
15 yr Member
Curious Curious is offline
Yappiest Elder Member
 
Join Date: Aug 2006
Location: Texas
Posts: 13,418
15 yr Member
Arrow Tysabri Information & Check In

Because information about Tysabri has gotten scattered, here is a place to keep it "together".

__________________

.

Last edited by Curious; 01-31-2008 at 10:07 PM.
Curious is offline  
"Thanks for this!" says:
Jodylee (01-31-2008), Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008)

advertisement
Old 01-31-2008, 08:15 PM #2
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

We have a LOT of resources available here.

We have people who were in the trials, people who fought to get Tysabri returned to market, people who testified at the FDA hearings both about the drug and the risk monitoring program, and people who are on the drug now!!

This is the place to ask questions, get information, talk to people who are on Tysabri, and help each other out.

I've been on Tysabri since May of 2007. I had my tenth infusion today!! I have had no adverse side effects. My 6 month MRI was the best I have had since diagnosis. I've had amazing results!!

I truly believe that Tysabri is working exactly as it is supposed to work. It's reducing relapses and slowing progression of the disease. Whatever comes after that is gravy, the cherry on top, the extra doughnut in the box!

I got some gravy, too!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
Riverwild is offline  
"Thanks for this!" says:
Jodylee (01-31-2008), SurvivingMSwithHOPE (02-02-2008), Twinkletoes (02-04-2008)
Old 01-31-2008, 08:34 PM #3
barb02's Avatar
barb02 barb02 is offline
Grand Magnate
 
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
15 yr Member
barb02 barb02 is offline
Grand Magnate
barb02's Avatar
 
Join Date: Jan 2008
Location: Illinois
Posts: 3,836
15 yr Member
Default

I go for my 3rd tysabri infusion next Wenesday, February 6. I had a reaction during second infusion (pain in upper back, shortness of breath, tightness in chest) so I will premedicate with benadryl. I was given benadryl in my iv when experiencing the reaction and it was resolved within 10 minutes. I actually was at the end of my infusion when I told the nurse I was having a problem so I received all of the ty.

I was wondering if anyone else has experienced anything similar. I am hoping and praying that I can tolerate tysabri and it helps.

I have noticed a bit of an increase in energy since starting.
barb02 is offline  
"Thanks for this!" says:
Jodylee (01-31-2008), Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008)
Old 01-31-2008, 09:13 PM #4
ewizabeth's Avatar
ewizabeth ewizabeth is offline
Elder
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
ewizabeth ewizabeth is offline
Elder
ewizabeth's Avatar
 
Join Date: Sep 2006
Location: northern Illinois
Posts: 5,258
15 yr Member
Default

I get my 10th infusion a week from next Monday. I'm glad you started this thread because I was going to ask a question of some of the Tysabri veterans.

My next infusion will be nearly five weeks instead of my normal four because they have such a busy schedule at my doctor's office. Has anybody noticed feeling worse or more tired when they have it a little later than normal? I wish I were having it next week instead, I feel like I need my Tysab-tini soon.
__________________
Wiz

Turn Left at the next election.
.


RRMS DX 01/28/03 Started Copaxone again on 12/09/09
ewizabeth is offline  
"Thanks for this!" says:
Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008)
Old 01-31-2008, 09:37 PM #5
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

Quote:
Originally Posted by ewizabeth View Post
I get my 10th infusion a week from next Monday. I'm glad you started this thread because I was going to ask a question of some of the Tysabri veterans.

My next infusion will be nearly five weeks instead of my normal four because they have such a busy schedule at my doctor's office. Has anybody noticed feeling worse or more tired when they have it a little later than normal? I wish I were having it next week instead, I feel like I need my Tysab-tini soon.
I haven't missed by more than a day, so I can't help you on the length of time. I get the feeling I need more sometimes, usually around middle of the third week. I'm not sure if it's because I am doing more or what, but I would hate to miss an infusion or be late!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
Riverwild is offline  
Old 01-31-2008, 09:46 PM #6
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

Quote:
Originally Posted by barb02 View Post
I go for my 3rd tysabri infusion next Wenesday, February 6. I had a reaction during second infusion (pain in upper back, shortness of breath, tightness in chest) so I will premedicate with benadryl. I was given benadryl in my iv when experiencing the reaction and it was resolved within 10 minutes. I actually was at the end of my infusion when I told the nurse I was having a problem so I received all of the ty.

I was wondering if anyone else has experienced anything similar. I am hoping and praying that I can tolerate tysabri and it helps.

I have noticed a bit of an increase in energy since starting.
We'll be waiting to see how it goes with you Barb! Just don't forget to premedicate!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
Riverwild is offline  
Old 02-01-2008, 02:30 AM #7
Swampdoctor Swampdoctor is offline
Junior Member
 
Join Date: Jan 2008
Location: Fairbanks, Alaska
Posts: 12
15 yr Member
Swampdoctor Swampdoctor is offline
Junior Member
 
Join Date: Jan 2008
Location: Fairbanks, Alaska
Posts: 12
15 yr Member
Default Tysabri user too!

Geez, the CRS is bad! I can't even remember who I was responding too!

I too am on Tysabri and started in February of '07. Thus I have had 12 infusions so far.

From the very first infusion I was always given two Tylenol and one Benedryl about 20 minutes before the infusion was started. You infusion center didn't do this? For some reason I though it was part of the TOUCH program protocol.

As others have stated, I have had very good results from my first year on Tysabri. I had MRI's done about 12 months ago and another set done just last month. No new lesions nor active lesions were found on the new MRI's.

My bladder frequency/urgency issues have declined by about 90% and my spastic episodes with my legs have decreased by around 95%. It is more difficult to tell if my cognitive dysfunction has improved. Also my tremor in my right hand is still just as bad.

I know that the Tysabri (and all the ABCR drugs) are designed to slow the progression of the disease and not treat the symptoms, so I am very happy to see positive results in the symptom end of things too!

Best,

Dave
Swampdoctor is offline  
"Thanks for this!" says:
D0ct0rT (09-27-2011), Jodylee (02-01-2008), Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008)
Old 02-01-2008, 02:47 AM #8
Vegasgrl's Avatar
Vegasgrl Vegasgrl is offline
Junior Member
 
Join Date: Jan 2008
Location: Las Vegas
Posts: 97
15 yr Member
Vegasgrl Vegasgrl is offline
Junior Member
Vegasgrl's Avatar
 
Join Date: Jan 2008
Location: Las Vegas
Posts: 97
15 yr Member
Default

I just had #9 today. I'm tired for the first couple of weeks after my infusion then feeling good a week or two before my next one. I love just going once a month rather than giving myself injections. I am a baby when it comes to needles.
__________________
Vegasgrl
.





"Old friends pass away, new friends appear. It is just like the days. An old day passes, a new day arrives. The important thing is to make it meaningful: a meaningful friend -- or a meaningful day." Dalai Lama
Vegasgrl is offline  
"Thanks for this!" says:
Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008)
Old 02-01-2008, 07:40 AM #9
Jodylee's Avatar
Jodylee Jodylee is offline
Senior Member
 
Join Date: Jan 2008
Posts: 1,365
15 yr Member
Jodylee Jodylee is offline
Senior Member
Jodylee's Avatar
 
Join Date: Jan 2008
Posts: 1,365
15 yr Member
Default

I'm starting Ty on February 13 unless they get a cancellation. I hope someone cancels so I can get in sooner. My infusion center is at my MS neuro's office. I think they need to expand. Wish me luck! I'm very optimistic about Ty. My hopes are high.

I'm gonna start posting about my infusions and keep a log going right after my first one.
__________________
Multiple Sclerosis-Dx May 2007

.
Jodylee is offline  
"Thanks for this!" says:
Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008)
Old 02-01-2008, 08:06 AM #10
D_HOLLAND D_HOLLAND is offline
Member
 
Join Date: Jan 2008
Location: Houston
Posts: 158
15 yr Member
D_HOLLAND D_HOLLAND is offline
Member
 
Join Date: Jan 2008
Location: Houston
Posts: 158
15 yr Member
Default

Chris goes for #3 on 2/5 - no adverse reactions and in the last week I've seen a very slight improvement in his mobility.

We pray it just slows down this MonSter!!!

Good thread - thanks for starting it
__________________
Son with MS
D_HOLLAND is offline  
"Thanks for this!" says:
Riverwild (02-01-2008), SurvivingMSwithHOPE (02-02-2008)
Closed 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


Similar Threads
Thread Thread Starter Forum Replies Last Post
Anyone else on tysabri? barb02 Multiple Sclerosis 19 08-28-2008 09:06 PM
Tysabri Talk msladyinca Multiple Sclerosis 115 04-01-2008 08:14 PM
Tysabri ArmyMahmaa Multiple Sclerosis 7 02-07-2007 04:17 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


All times are GMT -5. The time now is 08:03 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.