Anyone that has stopped Tysabri for any reason

[laurasari]

I believe i read that when you stop Tysabri for any reason there MAY be a rebound effect. Can anyone tell me how they felt when it left your system and how long does that take.
Thanks
laurie f

[lorib]

Ahh, I hope not! My last infusion was 2/09 and I'm switching to Copaxone so I can get pregnant later this year. I just emailed my neuro about starting copaxone and he said to start it "ASAP". I wonder if that's because you are likely to have an attack after stopping Ty. . .

Sorry this isn't more helpful

[jazzgirl]

I stopped it in December after a short 6 month trial. My co-pay with BC/BS Federal was RIDICULOUS!

I don't believe I had any kind of rebound effect, although my neuro told me to watch for it. I didn't feel any worse (or better for that matter)

[Ikoiko]

I took a six month break from Tysabri a while ago and my neuro had me use Betaseron. He said there is a very real risk for a serious rebound exacerbation.

[Curly Girl]

Felt fine

After stopping Tysabri because I had neutralizing antibodies to it, I had no rebound effect at all.

[tellnhelen]

I just started. They didn't mention a "rebound" if I stopped. This possibility should be included in the literature. Did I miss it?

[Ikoiko]

They should tell you!

[laurasari]

Thanks everyone. My neuro mentioned it but he did not mention what to expect. I guess it isnt something that happens often since none of you has had any problems.

That definitely makes me feel a bit better.

Laurie f

[LL60]

Look up IRIS.
Yes the rebound effect is real. Very real and can be really bad. Your doctor may not have known a lot about it.

22 infusions ago before I went on it, that was my only question. What about the rebound effect? My doctor said she didn't know anything about that, had never heard of it. So I went on Tysabri, since that was my only concern at the time.

Now she says this is a big problem they are seeing and I should try to stay on it. I intend to. It is working great for me. But it makes me very upset that I could research a problem that a neruo didn't know about.

Read read read.

[Badandy]

Thanks for the heads up on the IRIS. Although it looks like we don't need to worry about it until,(god forbid) we were to get PML. I have to admit, I am also very worried about getting it. I am almost on my 2 year's of Ty. I am pretty sure I think getting PML everyday. It's very hard not to, the number of people who get it seem to go up every week...95 as of this month.-not good.

-Andy

[laurasari]

I met with my neuro yesterday. He told me he is very concerned about the rebound affect of Tysabri when you get off it. An associate of his stopped a patient and said it was the worst mistake he had ever made. MS symptoms can come with a vengence. He consulted with an MS specialist told him to cover me with Copaxone during my washout period from Tysabri till i start Gilenya. So in 3 weeks i will begin Copaxone for 2 months. I was on it years ago.
Take care
laurie f

[0485c10]

imnteresting article about a study done in italy about stoppinhg ty-drug holidays

19% had a relapse duruimg this time
47% had increased mri activity

http://ms.about.com/b/2011/03/01/mor...g-holidays.htm

[boosmom]

I took Ty for 12 months , due to my fear of PML I switched to betaseron. It would have no doubt been cheaper and just as affective to inject myself water.

After six month and one extended exacerbation later - I have once again began Tys. I have not bounced back to the point I thought I would - or had hoped. I was definitely slammed. For the first time I considered leaving work.

Only one dose of Tys and I feel much better. Not were I was 8 months ago - but better.

PML still worries me - but this med holiday absoueetly made me reassess my quality of life.

I have heard that my neuro has also prescribed 5-6 week cycles.

Kathy

[daisy.girl]

After stopping Tysabri because I had neutralizing antibodies to it, I had no rebound effect at all.

How did you know you had neutralizing antibodies? How many infusions did you have, and what were your side effects?

[daisy.girl]

Look up IRIS.
Yes the rebound effect is real. Very real and can be really bad. Your doctor may not have known a lot about it.

22 infusions ago before I went on it, that was my only question. What about the rebound effect? My doctor said she didn't know anything about that, had never heard of it. So I went on Tysabri, since that was my only concern at the time.

Now she says this is a big problem they are seeing and I should try to stay on it. I intend to. It is working great for me. But it makes me very upset that I could research a problem that a neruo didn't know about.

Read read read.

My understanding is that IRIS is only IF you develop PML. That is what the people at Biogen told me.