I am new to this will you please help me regarding Tysabri

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lalalaCD
Regular Member


Date Joined Jul 2008
Total Posts : 36
   Posted 10/19/2008 1:12 PM (GMT -6)   
 Well me doctors want me on tysabri as a result of MRI of my active leisions.  After reading the information regarding the PML it scares me big time...does anybody use tysabri here? or does anybody know about this PML or know of somone that has gotten it? thanks guys!!
 
 
 
         
 
 
 
 
                     Diagnosed Aug 2007 of crohns disease
                     Currently Taking 6mp (soon remicade)
               panic/anxiet attacks...not on meds for them
                               Fistulas make me mad!! lol
                                   


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/19/2008 2:22 PM (GMT -6)   

Hi Lalala,

I’m so sorry your disease is this active. I know Tysabri is used for Crohns as well as MS, and I see you’re your signature you are dxed with crohns….I hope the lesions are due to Crohns and not MS as well!?!

There are several members of this board who have experience with Tysabri, and hopefully they will see your post and share their experiences with you. Also, if put “tysabri” in the search field at the top of the page, it will take you to many previous posts and articles on HW on this subject.

For example, this one is several members of the Crohns board discussing their experiences with tysabri:

http://www.healingwell.com/community/default.aspx?f=17&p=1&m=1109339

Here is some info on one of the recent patients with PML, which also describes at bit more about it:

http://www.medscape.com/viewarticle/580871

Hang in there, and let us know what you decide,

Sunny

 


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 10/19/2008 2:27 PM (GMT -6)   

Shoot, when I checked the link on the PML article, it took me to a login page. If this happens to you as well, try to google the search terms below:

A Case of PML in a Natalizumab-Treated MS Patient


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 10/19/2008 2:27 PM (GMT -6)   

Hi lalalaCD,

You have Crohn's and MS?  I see Crohn's in your signature but no MS.  If you do have both, and it does happen, tysabri will help with the Crohn's as well.  We have a couple members that are on tysabri and while the PML is always a concern, those on it seem to like it.  I am sure they will be along shortly to let you know.  We have also have one member that was on tysabri but reacted to it like it was an allergen and eventually developed antibodies to it and had to stop infusions.  I hope this works for you.  Keep us posted.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 12/29/2008 2:18 PM (GMT -6)   
I recently was taken off Tysabri because of the 2 PML cases over in Europe. My doctor and about 25 other Professionals that he talked to during a Seminar last September didn't think I should be on it because of those PML cases and now my Neurologist is going to put me on Cytoxan because he says that it seems to be the only treatment that does any good for my MS, though he is reluctant to use it because of the side effects it could cause.  I expect to go on Cytoxin within the next 2 weeks I hope. I haven't had any treatments for 4 months now and believe me, I can feel it wearing me down!  Happy New year everyone! May 2009 bring all of us good news that they have finally found a cure for this awful disease! smilewinkgrin


 
 
 
 
                                           Chuck Huckaba
                                    AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2007
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.

Post Edited (bohuck2) : 12/31/2008 1:21:08 PM (GMT-7)


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 12/29/2008 7:25 PM (GMT -6)   
Hi there lalalaCD,
     I am on Tysabri and have been since March of this year. I really think that it is a personal decision that you have to make that takes alot of research and thought. It took me probably 6 months to decide to give it a try. With me, it was a huge decision because i am a mom and i was on the fence as to, Number 1- was this selfish to put myself at risk or Number 2-was it selfish not to give it a try and possibly feel better so i can do more with her. I was diagnosed with relapsing remitting MS and was on Rebif for 14 months with no remission at all. I kept getting relapse after relapse, no breaks and constantly new symptoms. I was scared that it was getting to a more progressive stage (neuro thinks i've had it for 10-15 years) so, i decided to give it a try and i'm glad i did. I feel way better and have not had a relapse in 10 months and no changes with my MRI. I still have residual symptoms, but atleast my outlook is better and i can go places with my family. It is scary being on it, i have to say, but i try to think positive and hopefully i will be safe. I don't know alot about PML, just what i read, but the stats are 1 in 7,000. I think its worth the gamble, in my opinion. My infusions are a snap too, no side effects but a small headache and a little stiffness the next day.
Your neuro can hook you up with a Tysabri patient advocate who will call you if you like and you can talk with them about their experience. Thats what i did. And that was helpful in making my decision too. I think all he/she has to do is call the drug company and they get in touch with you. I hope this helps a little. Hang in there.
Good Luck in your decision,
Lynn
Dx MS December, 2006
Started Tysabri March, 2008
Zanaflex as needed
Cymbalta

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