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need advice Tysabri?

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Posted 1/27/2009 4:34 AM (GMT 0)
hi I am new and have MS, dignoised in 98'.

I have done avonex, steroid Ivs, Chemo, ( which done very well for me, but took all the treatments one can take and had to stop.) Then I have tried Copaxine, and had a side affect of very low blood pressure. which took months to get back to my norm.

In the meantime I been experiencing new symptoms, and the other symptons are starting to come back and have worsened sionce my Chemo.

Now my nurgologist is wanting me to take the Tysabri or Relib I dont know much about either with the exception of the possible PML you can get by takung the Tysabri. 

My question is; which one should I try 1st?  As my Immune system is next to none. A commonon cold takes me 6 months to get over it and I am scared to death that I may not be a very good candiate for the Tysabri.  Any avice would be greatly appreciated.

thanks,

Krs

 

Posted 1/27/2009 6:33 PM (GMT 0)
It really is a personal choice. I am not real familiar with Rebif but I was on Tysabri last year until my Neuro took me off of it in September after my 5th treatment. I think the odds of someone getting the PML Brain disease is really pretty low as long as your system is washed out of all of the other drug treatments you have been taking. They say you should go at least 3 months after you had a treatment before going on Tysabri. The people I talked to when I was getting treatments of Tysabri were very pleased with it and they all told me that it was working for them. If you have any questions about it, I suggest you go to http://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/ and email them to Lauren as she has been on Tysabri for a while and will try and answer any questions you have.
Good luck to you and God Bless you.
Posted 1/27/2009 11:56 PM (GMT 0)
Hi Krs,

I had only one treatment of Tysabri before it was taken off the market. I felt like a super-star that month. Right now I'm on Copaxone and starting LDN...the relapses seem to be under control for now. But if I was relapsing every month like I was before, I would try Tysabri again. But like Chuck said, it's a personal opinion for sure. I'm not familiar with Rebif either, but I know I chose Copaxone to avoid feeling like I had the flu on top of MS.

Good luck and keep us updated.
Posted 1/29/2009 12:27 AM (GMT 0)
Hi there,

I was on Rebif for 14 months. It did not work too well for me. I kept getting flair ups. Also, i had severe body aches that i just thought was my MS but was indeed the Rebif. After i stopped it i felt so much better. I started Tysabri last March. It was a huge decision for me, and like the folks before me said, its a personal decision. With me, my neuro thinks i have this disease for 10-15 years when we look back at my sx's, so i was scared i was getting to a more progressive stage of MS. That is what made me go on Tysabri. I felt it was worth the risk for me. I have been doing really well on it. I have way more energy and walk much better. Also my MRI was stable. Thats the goal so i guess right now its worth it for me.

Good Luck

Lynn

Posted 1/29/2009 3:26 AM (GMT 0)
Thank you both so much for the comments and yes it has been a big decision change for me.LOL
I have decided to let my doctor know I will give the tysabri a try as long as my insurance will cover it. Once again thank you for a quick reply.
Krs
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