I'm new to this group and looking forward to learning what I can -- and hopefully contributing something as well. My new bride is scheduled for her fourth Tysabri infusion next week after developing antibodies to interferon (Betaserone for a year). Do any of you know the percentage of patients who develop antibodies to Tysabri?

Thanks
JJ

Hi JJ and welcome to NeuroTalk!

The drug monograph lists information for antibodies under "Adverse reactions- Immunogenicity. See pages 9 and 10.

http://64.233.169.104/search?q=cache...lnk&cd=5&gl=us

Hope that helps you!

I had my 10th infusion last week. I haven't been tested for antibodies, but I haven't had any reactions to suggest that they have developed either.

How is your fiancee doing with Tysabri so far?

You mean my 'blushing bride'? (First wedding anniversary is Valentine's Day !)

Thanks for the feedback - you provided the answer to my question.

LL (Love of my Life) never displayed any 'side effects' after one year on Betaserone - but blood tests last year indicated that her body had developed neutralizing antibodies to Interferon. Betaserone wasn't slowing progression of the disease because of her antibodies to Interferon and that's why her neurologist recommended that she switch to Copaxone or Tysabri. He encouraged Tysabri because of clinical evidence indicating that Tysabri was more effective than Copaxone in moderating/controlling progression - despite the risks.

My new bride is doing well with Tysabri. She has minor side effects such as "flushing cheeks" and "severe fatigue" on the day of infusion - but she seems to (otherwise) tolerate the treatment well. She doesn't seem to recognize any significant difference since starting the treatment, but I see some improvement in her energy level. Time will tell.

We appreciate the feedback from all of you in this group. We learn more from groups like this one and from other groups than we do from all the medical journals and the doctors. Your personal experiences are helpful to us.

Health Talk (dot) com has another MS/Tysabri group that is helpful.

Until we find a cure, we hope that therapies like Tysabri will help us "stay the course."

Thanks again.
JJ

I was in the origiinal Antegren trials years ago. I have been off Tysabri for a while. I just went today to fill out all of my paperwork at the MS Centre and am going for my MRI this week. How long after you filled out the paperwork did it take you to get your first infusion?

The nurse didn't think it was going to take longer than 2 weeks before all of my paperwork would be in order. I was just wondering how long it took most of you and your insurance companies to approve it?

Thanks!

I was approved in 2 days and I belong to a HMO. I think that must be some kind of record. I thought it would take a couple of weeks.

Hi Chris!

It took me a bit longer than two weeks. When I went for my MRI pre-Ty, it wasn't good and the neuro insisted that I do a course of steroids ( stupid MRI). Then I was approved but they hadn't yet trained the infusion center at the hospital. Then they had to look into who was paying what for me, cause I didn't want to get hit with the post infusion shock of a huge bill! I HAD to know how much I would have to pay, if anything.

All in all I think it took a month before i got the first dose. I hear things are a lot quicker now.

Good Luck! Let us know when you start!!

My first infusion is rescheduled for Thursday!

Chris,

My last Avonex shot was 11-19 and I was approved last week. My insurance blamed the delay on my Neuro, my Neuro blamed it on the insurance co. yada yada yada.

I think it was a little of all and also being the holidays. The infusion nurse said it shouldn't have taken so long.

Chris was off Avonex for 6 weeks before starting Tysabri so he went straight downhill being off all meds for so long.

Went for infusion #3 yesterday - no side effects.

Maybe a very slight improvement in energy but at least not worse. Still praying for continued improvement and certainly no progression.

Hi,

I'm new here - both to MS, being sick, and to these boards (this is my first post).

I was dx with MS on January 4th. I went to a neurologist b/c I thought I had a pinched nerve in my face/jaw area, as the right side of my face had become numb over Xmas - and my dental specialist ruled out that it wasn't anything related to my TMJ problems. I had felt dizzy and had some brief vision problems a few days before I saw neurologist. I seriously had NO idea that I was *very* sick. Neuro said he thought I had a stroke (shocking news since I was just a few weeks shy of my 32nd birthday!). He rushed me for MRI - I told him he needed to get back to me that day - b/c if he left for the weekend without letting me know what was happening, I'd hunt him down...

Well, I guess I put us both in a crappy position - b/c come that afternoon - which was a Friday - the neuro called and said "It wasn't a stroke" - to which I took a deep breath - and then he said "you have MS" - to which I replied "what?" - and then he proceeded to talk for 12 minutes and I was completely out of my body (I checked the timer on phone when I hung up). I think it was the longest weekend of my life.

Within 48 hours of the diagnosis - I could had complete double vision and couldn't stand up straight, let alone walk b/c I was so dizzy. Everything started moving so fast - nurses to my house giving me IV steroids for 6 days...then oral steroids...then immediately started Copaxone. Doctors will not put me on any of the interferons as I have a terrible history of depression....and he told me from the start that I need to be on Tysabri, but that I needed to try Copaxone first.

Backing up a bit - crazy about it all - since I know so many people have spent years trying to get a positive dx here.....for me - there was a big glaring neon sign on my MRI that says "MS - dont miss me - i'm here" - i have multiple lesions - many active at the moment - as well as many black holes and grey/white spots. Several lesions are greater than 1cm in size...and I have something called "dawson's fingers" which are a hallmark of MS. I saw the MRI on the puter screen - and I still have nightmares from it. The neurologists I have seen have said that the MS was hidden for a while but now it is coming on strong and aggressive and it isn't being shy anymore.

As of Monday, it will be 30 days on Copaxone...and as I confirmed my delivery of the next box of the shots - I realized how badly I want on Tysabri - and is this a waste of time - b/c I know I need to be clean from Copax before starting. When I last saw neuro he said we should wait 3 months before starting Tysabri. I think that is b/c it is hard to get approved or whatever unless you fail the other meds. So I said - well what if I lied and said I had a bad reaction - and he said he couldn't lie...but he couldn't stop me. Meanwhile, two days later, i started having reactions to the darn shots.

The symptoms from the flare-up lessened quite a bit with the IV treatment - but that was 3 weeks ago - and in the last week - they have started coming back stronger - though not nearly as bad as they originally were. I have never gotten any feeling back in the right side of my face/head. Neuro said the steroids take time to work and that an exacerbation can take 2 months to go away.... I've been in this one, I guess, since Dec 22 (when the numbness started).

I'm sorry - I just realized how long this is - I think the shock of it all is wearing off - and I'm beginning to freak out. I had to go get a shower chair and walker this week I sleep a lot - though I take something for the fatigue (provigil - though it doesnt do enough even at 400mg a day). I feel like a piece of dead wood most days. I hate having these limitations - like if I do one errand a day - then I'm toast. My brain shuts down and I can't function anymore.

I guess the point of this is - why am I waiting to start Tysabri? I'm so NOT afraid of the risks - and I know it isn't a miracle cure - but the docs gave me such a bleak prognosis - I want to start this now and get going. I know copaxone is probably not strong enough for what I need - and I can't risk the interferon treatments. Should I start pushing my neuro to get me on Tysabri now and not wait the three months?

I'm feeling like a wreck. I feel the depression creeping in - I don't know if I'm strong enough to fight this all....

Glad these boards are here....and I certainly hope someone read this.... (sorry so long)

Thanks,

~Keri

Yikes Keri!

Your story sounds like mine, in where the flashing sign sits there and yells "I'M HERE!!"

I too had the sudden onset of symptoms, and within a month my neuro started talking about Tysabri. I was scheduled for my first infusion March of '05. Two weeks before my infusion, Tysabri was withdrawn from market.

I started Copaxone in March '05 and remained on it until Dec. 06. Tysabri was returned to market in June '06. I had serial relapses and ongoing damage. Within that time my neuro had moved and Tysabri returned to market. It took me months to find another neuro and get the prescription for Tysabri.

I started Tysabri in May of '07. To date I have had NO relapses, my MRI shows no new lesions, no enhancing lesions, several large lesions "12-14mm" have either greatly reduced or disappeared. My annual vision tests were extensive and thorough. No damage now shows anywhere on my optic nerve, a scotoma( blind spot) I had on my R eye is gone, my eye muscles are under MY control, all my colors are normal and my 2003 prescription for slight nearsightedness remains in effect with NO changes.( I couldn't see well with those glasses for a year!)


In my case, if I'd had the Tysabri from the start I would have more than likely never had to go through the hell I went through until I was infused.

I'll take the 72% of patients who remained relapse free for two years, the 83% of patients who remained disease free for two years, the 67% reduction in EDSS progression after two years, the 10:1 ratio of Lesions placebo/Tysabri after two years, etc etc etc.

Time is Brain. Your body, your choice. Your disease, your choice.

Whatever you choose, we are here to support your choice.