Experiences with Tysabri

Post by **Arron** » Wed Mar 29, 2006 10:11 am

This is a call for our members who currently are, or previously have taken, Tysabri for the treatment of MS to please share your experiences with the therapy at a new project that has sprung out of our work at This is MS, aptly titled "the Experience Project"

Born out of our experiences (no pun intended) here at This is MS, where a wonderful community has formed based (originally) on shared and common experience, the Experience Project extends that reach of reassurance and wisdom provided by people who have "been there before" to all people and all experiences.

Specifically, while MS can certainly shape a person, it does not *define* them-- each of us are complex individuals with thousands of experiences that make us who we are, of course one of the most potent being our experiences with Multiple Sclerosis.

Each one of those experiences would be worthwhile to record for your own history, the therapeutic effect of writing, and the benefit it could provide to another who is just now facing something you have already been through (and survived). Your experiences will undoubtedly help countless others.

Participation is of course absolutely free. We have been working passionately on this project for a long time, and really believe in its potential to help others. Taking a few moments to share your experiences with the MS therapies you have tried will help us make that a reality.

Share Your Statin Experiences

Read Others' Tysabri Experiences

DenverCO · Post by **DenverCO** » Thu Jun 15, 2006 12:01 pm

Aaron,

I tried to post an experience, but the system didn't recognize my username / password.

DenverCO · Post by **DenverCO** » Wed Oct 11, 2006 5:45 pm

Please share...

amelia · Post by **amelia** » Thu Oct 12, 2006 7:46 am

Yes, Gary and I would love to read what others have gone through. I know SOMEBODY is getting it!

bromley · Post by **bromley** » Thu Oct 12, 2006 8:27 am

Amelia,

I visited one of the Brain Talk websites and they have a Tysabri thread where people are posting their experience. Most have only had 1-2 infusions. The general sense is that most think it too early to tell if working, others think it is having a positive affect. Can't give you a link because I fell across on a search for something else. HarryZ uses it so could point you in the right direction. I think the site was closed for a while because of technical problems.

Ian

Found the link -

<shortened url>

HarryZ · Post by **HarryZ** » Thu Oct 12, 2006 3:51 pm

Amelia,

amelia wrote:Yes, Gary and I would love to read what others have gone through. I know SOMEBODY is getting it!

Here is the link that Ian was telling you about...

http://forums.braintalk2.org/

Scroll down to the MS link and then register...it's free. There are some pretty decent people that post on that site and of course they talk about Tysabri and have some users that participate.

Harry

GregB · Post by **GregB** » Sat Oct 06, 2007 2:37 am

I am considering taking it. I am on rebiff. Is there anybody that can say it is better

HarryZ · Post by **HarryZ** » Sat Oct 06, 2007 5:19 am

GregB wrote:I am considering taking it. I am on rebiff. Is there anybody that can say it is better

Sorry...posted a message in the wrong section...Harry

ewizabeth · Post by **ewizabeth** » Sat Oct 06, 2007 6:33 am

Hi Greg,

I have taken both. If Rebif hadn't caused my depression to go through the roof, I'd likely still be on it. I go for my sixth infusion next week of Tysabri, and I'm feeling pretty good. I have more good days now. It has gotten progressively better over time, and I can now say, I think it's the Tysabri, because I haven't felt this good in awhile now. Yesterday was an excellent day, considering.

I still take several other meds, but I have a feeling I'll be able to taper off some of them over the next six months or so.

Good luck with your decision!

superman · Post by **superman** » Sat Oct 06, 2007 10:28 am

i have taken both as well: Rebif 44 for 6 years until the day when it had no more action to stop my lesions being active and growing.
But for the 4 or 5 first years, it allowed me to keep on jooging etc...
Now i am taking tysa and feel better since i have not had any new crisis for 4 months(since my Tysa start)
So i'd say that if u feel good with Rebif keep on with it, otherwise move to Tysa.

seeva · Post by **seeva** » Thu Jan 24, 2008 5:29 am

bromley wrote:Amelia,

I visited one of the Brain Talk websites and they have a Tysabri thread where people are posting their experience. Most have only had 1-2 infusions. The general sense is that most think it too early to tell if working, others think it is having a positive affect. Can't give you a link because I fell across on a search for something else. HarryZ uses it so could point you in the right direction. I think the site was closed for a while because of technical problems.

Ian

Found the link -

<shortened url>

DEAR MEMBERS MY NAME IS SEEVA PLEASE SOMEONE LET ME KNOW HOW I CAN GET TYSABRI NOW IN AUSTRALIA. ACCORING MY DR. TYSABRI IN THE MARKET IN APRIL 2008. WITH THE PPS APPROVEL. IF ANY ONE LET ME KNOW HOW I CAN GET NOW AND THE COST.
REGADS
SEEVA :roll:

msladyinca · Post by **msladyinca** » Thu Jan 24, 2008 4:47 pm

Hi Seeva,

I am here in the US, and I have had a 17 Tysabri infusions so far.

On an Australian MS website, someone posted that Tysabri is being made available for 20 MS patients, until the PBS starts to fund it in April, 2008.

You/Neurologist need to contact Biogen (the manufacturer of Tysabri.

The Australian MS website is: <shortened url>

Also, below are the links to Biogen's website, and the website of Élan (the company that discovered Tysabri and is the copartner of Biogen for Tysabri). Hope this information helps. All my best, Lauren:

Biogen: http://www.biogenidec.com/site/contact.html

"contact in Australia:Australia

Suite 2, Level 4
123 Epping Road
NORTH RYDE NSW 2113
AUSTRALIA
Phone: 61 02 8875 3900
Fax: 61 02 9889 1162"

Élan: http://www.elan.com/Products/

"Elan has a Patient Assistance Program to provide TYSABRI and PRIALT to patients who might not otherwise be able to afford them. For more information on Elan's Medical Needs Program, you may contact the following: TYSABRI at 1-888-489-7227 or PRIALT at 1-888-774-2581"

seeva · Post by **seeva** » Thu Jan 24, 2008 5:51 pm

HI LAUREN THANKS FOR YOU INFOMATIONS ABOUT TYSABRI. AFTER YOU TAKING TYSABRI INFUSION DID YOU FIND ANY IMPROMENTS?

REGARDS
SEEVA

msladyinca · Post by **msladyinca** » Fri Jan 25, 2008 12:57 pm

Hi Seeva,

My MS is now stable, and I have not had a relapse nor any disease progression in over a year since being on Tysabri therapy, woo hoo!

All my best, Lauren

seeva · Post by **seeva** » Fri Jan 25, 2008 9:52 pm

HI LAAUREN THANKS FOR YOU REPLY. BUT I HAVE PROGRESIVE RELAPSING-REMITTING TYPE M.S MY NEURO TOLD ME AM NOT RIGHT CANDIDATE FOR TYSABRI .SO HE ASKED ME TO WAIT FOR OTHER NEW DRUG SOON. AND IN AUSTRALIA THIS TYSABRI WILL AVILABLE UNDER PPS SYSTEM.
BEST REGARDS
SEEVA :roll:

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