Does anyone know of a way off tysabri without rebound

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Does anyone know of a way off tysabri without rebound

Postby Pink2010 » Thu Oct 21, 2010 9:22 am

I have tried to get my neuro to take me off tysabri since the first year I was on it. Each time I am told no. Each time I tell them I am sick in bed over 95% of the month; I am told "you will be just as sick with another drug". I don't care! I have constant lung infections and the antibiotics now are all worn out. They no longer work. I want off this drug. I know exactly how I intend to manage my MS, but I can't do it while on tysabri.

I was to have had the liberation treatment for ccsvi 3 weeks ago, but had to cancel because of illness. I have not been able to go to a school play due to infection risk since 2-08. I can't go anywhere with out a mask. I want a life while I still have a chance at one. This drug has taken all my choices away from me. I want to be able to make choices again. No one told me about rebound before I started. I am now at #33. I guess I'll be at 40 soon. I see no out.

Any help here would be very much appreciated. I do believe there is a 44% chance of rebound as I went into a flair at 3mo off last year and had to go back on. BTW, it is said that what ability you lose in a rebound flair one will not get back. I believe this to be true as I did not get back what I lost. So much for me trying it alone. I need your help please!

:?
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Postby Pink2010 » Thu Oct 21, 2010 9:57 am

This is from scorpion's thread ----------


http://www.doctorslounge.com/index.php/news/pb/14729
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Postby turbotaguy » Thu Oct 21, 2010 12:39 pm

Pink - you need to make these decisions for yourself. Your doctor simply saying NO is invalid. You may need another doctor. I always begin to question a docs opinion that is too verbal.

I left Tysabri a year ago. I barely had any rebound. I'm now on Copaxone and doing great, except now I don't have any worry about infections or PML or death for that matter (from PML anyway).
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Postby stillfighting » Tue Apr 19, 2011 8:18 am

If people will fill in the gaps it's my understanding the Copaxone needs to be started right away.
I don't know why people are so afraid to share info. It's like they have got to have a secret.
Just see if you can get a referrel to another neuro or get very proactive and tell you current nuero to script C.
Tell him the side effects are not tolerable on TY.. People are only victims if they are not heard
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Postby Kzajoncz » Tue Apr 19, 2011 1:52 pm

I had been on ty for over 4 years. I stopped my infusions at least 3 times (because of 3 week withdrawal symptoms). I never had any rebound effects. I tested positive for JC virus a couple months ago and am scheduled to begin gilenya. I am rethinking about going back on tysabri. It made such a difference in my disability and its scary to try something else so new. I have a tough decision to make.
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Postby stillfighting » Tue Apr 19, 2011 4:07 pm

I am on Gilenya and doing well with little or no side effects.. I know any change can be scary... It's hard I know and when your doing good it's harder... stay strong.. It's my understanding.. and I am not really up on this.. if your being really monitored your not at high risk for pml.. I am not real up on ty as I never took it.. with as the dose and pml is related issue goes.. so forth..
Hang in there... Be strong try to not worry too much .. it's hard I know
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Re: Does anyone know of a way off tysabri without rebound

Postby NHE » Tue Apr 19, 2011 10:14 pm

Pink2010 wrote:I have tried to get my neuro to take me off tysabri since the first year I was on it. Each time I am told no. Each time I tell them I am sick in bed over 95% of the month; I am told "you will be just as sick with another drug". I don't care! I have constant lung infections and the antibiotics now are all worn out. They no longer work. I want off this drug. I know exactly how I intend to manage my MS, but I can't do it while on tysabri.

I was to have had the liberation treatment for ccsvi 3 weeks ago, but had to cancel because of illness. I have not been able to go to a school play due to infection risk since 2-08. I can't go anywhere with out a mask. I want a life while I still have a chance at one. This drug has taken all my choices away from me. I want to be able to make choices again. No one told me about rebound before I started. I am now at #33. I guess I'll be at 40 soon. I see no out.

Any help here would be very much appreciated. I do believe there is a 44% chance of rebound as I went into a flair at 3mo off last year and had to go back on. BTW, it is said that what ability you lose in a rebound flair one will not get back. I believe this to be true as I did not get back what I lost. So much for me trying it alone. I need your help please!

:?


Steroids can be given after stopping Tysabri to prevent the inflammation associated with IRIS (Immune Reconstitution Inflammatory Syndrome). I second the vote to get a different doctor.


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Postby stillfighting » Tue Apr 19, 2011 11:11 pm

Yes I think another dr too. If my dr does not think something is a good option for me.. they need to tell me why................but the choice is mine.
If they feel it is dangerous, then they have the option not to prescribe it.
But not to just say NO.
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