I'm ok Barb and Sally, don't worry about me. :) :hug: :hug:

I was thinking about it since last month and after this past week's events with Biogen, it's what I had to do.

He said that a minimum "drug holiday" would be three months since that's how long it takes to clear from your system. He also said he has no way of knowing if this will help or not and anyone who claims to know that it helps is wrong.

He also said that in a post trial evaluation, patients were given spinal taps and that the T cells were at zero even at six months post drug cessation. So we know it keeps doing what it does for a long time. Everyone will be different of course but I'm hoping I'll be about average in that regard.

He also spoke to me about Cladribine, an oral treatment that should be approved in the spring.

It has a long history since it's a chemo drug that has been used for 18 years, but the MS dose is much smaller and even safer. He said the side effects were negligible in the trials. So I'm thinking about that one as a possible replacement. It's hard to believe that a pill is so close to reality. :)

:grouphug: Wiz.

You have a PM, my Tysabri twin.

Hi Wiz, It sounds like you feel good about this decision and have a supportive neuro. I'm sorry you had to make the choice though. Nothing is easy with this disease, is it? :( I'm also a little sad to see you leave the Tysabri board since when I went on the drug you were already here (so in a way, you were with me from the very beginning!!) But I hope things end up going really well for you.

I too have been thinking about Cladribine and also Fingolimod which it sounds like it is not far behind Cladribine in coming out.

Natalie :hug: :hug: :hug:

I'm not going anywhere Natalie. :p :hug: I'm sticking around to keep my thumb on Biogen until they straighten out and behave themselves for everyone else's sake. I might go back on Tysabri anyway, (what if I had a relapse or something)? Who knows what will happen a month from now?

The neuro said he expects that most patients will switch to the oral meds eventually and they'll give the shots and Tysabri a real run for the money as soon as they're released, and I'm anxious to see how that plays out! :) ;)

Good, I'm glad you'll still be around here! I appreciate you pushing against Biogen and the FDA. I've got plans to do some calling on Monday and write to my senator. I'll let you know what happens. I think Biogen is underestimating the pressure of patients right now.

Wiz,
Oh, sweetie, I am sorry to hear you had to go off of Ty:hug:...I know you felt it was helping you...glad to hear Dr. W took time with you...
keep us up to date on how you're doing...and know we're here for ya!!

I asked my neuro if I could possibly have an infusion every 8 weeks instead of every 4 weeks. She said she doubts my insurance will pay for it that way :(

I'm still weak from missing so many infusions this past summer. I've had 2 infusions since then and I am a bit better but I can still tell the difference. My neuro suggested I stay on Ty a little longer while she tries to get more info for me. She said that since I know the risks and the signs of PML and since my QOL was so poor before I started Ty she thinks I should wait a little longer for more info before I stop permanently. She has told me there are several new meds on the horizon.

I started seeing small benefits after my 4th infusion and that was I was leaning less on the wall when taking a shower-therefore, better balance was beginning ;)
Glad no problems with #2:)
Linda

I didn't notice any changes after my first few infusions. My husband noticed them before I did ...LOL He was the first to notice that when I tried to stand up on my own I wasn't as shaky.

Good luck!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!