This Is MS Multiple Sclerosis Community: Knowledge & Support

HELLO ALL,

WAS WONDERING IF ANYONE ON THIS SITE HAS STARTED TYSABRI. MY DOCTOR TOLD ME YESTERDAY SHE WANTS ME ON IT, ALONG WITH AVONEX. WE HAVE TO PUT ALL INFO INTO INSURANCE TO SEE WHAT THEY WILL COVER, BUT WAS WONDERING IF ANYONE HAD ANY EXPERIENCES THEY COULD SHARE REGARDING THIS NEW MED. ANY FEEDBACK WOULD BE GREATLY APPRECIATED. THANK YOU

Hello -

I've been reading for awhile now and figured it was time to chime in. I was diagnosed last spring, started Betaseron and had to stop because of liver complications, and therefore can not do any interferson based med. Even did Copaxone for awhile, just in case Tysabri wasn't going to come through. But now I am doing Tysabri (and lots of supplements and diet tweaking).

The infusion on Tuesday went fine. It takes an hour and then you have to stay for another hour to make sure there are no adverse reactions. I'm doing it at a busy MS clinic in Boston and the nurses there told me that no one has had a problem yet. The thinking is that any potential problems would come later, particularly with possible antibodies. I felt no side effects of any kind during or since.

If anyone has any particular questions that I could answer, just let me know. I've been impressed with the quality of discourse on this site and am glad to be abe to contribute.

Arcee

DEAR ARCEE,

THANK YOU FOR REPLYING AND SO QUICKLY AT THAT. I AM GLAD TO HEAR YOU HAVEN'T HAD ANY SIDE AFFECTS, AND GLAD YOU ARE NOW GETTING TREATMENT. HAVE YOU ONLY HAD ONE TREATMENT? AND JUST SO I UNDERSTOOD CORRECTLY, THEY ARE TELLING YOU SIDE AFFECTS MAY COME AFTER YOUR BODY GETS USED TO IT?

Yes, just one treatment so far, and then subsequent ones are four weeks apart.

My understanding from the nurse and from reading a bit is that the antibodies need time to develop if they are going to develop, so they'll be checking on them after a few treatments and beyond. As for other side effects, she said she wasn't surprised people were doing fine with the first treatment and my interpretation was the same as yours, that once more is in your system more consistently, the possibility of side effects becomes more, hmm, possible.

I think some other posts have talked about it a bit. The comparison of Tysabri side effects to the side effects of placebo in the Tysabri literature would lead one to think they, for the most part, are not a huge concern. But of course our understanding is limited to the data that has been shared.

I would add that I was probably more nervous right before starting this treatment than starting any of the injections. But that feeling quickly went away as I think it was focused on the procedure. I actually feel less concerned/more hopeful about it than I was with the others, for whatever that's worth.

Arcee

Hi Arcee,

First of all, thank you so much for sharing.

Secondly, I know this is a bit of busy-work, but would you mind copying and pasting your first post above to the "Calling all Tysabri Users" thread at the top of the Tysabri forum here? It would be great to have easy access to all the testimonials in one thread.

Thanks and continued good feelings!

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Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.

not sure if this is the correct place to post this
went to my neuro yesterday, whilst Tysabri is not available here yet (about 12-18 months away) my neuro told me that whereas the CRABs reduce relapse by 30% Tysabri is 50%, sounds too good to be true ?

You guys will be the guinea pigs before it will be released here. Hopefully there may be a greater understanding by the time it gets to Australia ?
Stoli

Arcee,

Could I be nosy, and ask about price? My best friend was supposed to get her first treatment of tysabri today, but the insurance has put her off. first they told her, as long as she did it in the dr's office, she would just have to pay her co-pay.

Now they're saying, if they do decide to pay, she would have to go to the pharmacy herself, and pick up the tysabri, and bring it with her to the neurologist office (that's how I think they will get her to pay), cause I think it would cost an arm and a leg if she just picks it up herself.

If you can answer the price question. it would be great, if it's too personal a question, I understand.

I know my friend is very discouraged, she was so looking forward to starting this treatment, she wanted ldn, but he wont' prescribe that, so this was the next best thing....the avonex made her deathly sick, so she quit taking it.

Thanks for your post and your time

Peggy

You weren't asking me, but if it helps, my neurologist (Austin, TX area) told me last month that Tysabri is listed at $1,800.00 per month/dose.

YES I WAS TOLD THE SAME IT IS $1800 PER MONTH. THEY SAID THEY BELIEVE MY INSURANCE WOULD PAY 80% WHICH WOULD MEAN I PAY $300 OUT OF POCKET

Tysabri is administered every 4 weeks, not once a month,
so 13 x $1,808.00 = $23,504.00 / year

Oops. Sorry. I'm sure you're right about that. Thanks for the correction. And at those prices, it does make a difference, doesn't it?