I thought i posted this 2 days ago but can't find the post.
I have heard there are possible rebound effects from getting off Tysabri and i was wondering if anyone can share what i might expect.

I have been on tysabri 2 1/2 years just learned i am positive for the JC virus and my Dr wants me off. On Tues we will discuss what we do next.

I would appreciate any info you can offer. Thanks
laurie f

oh Laura! how scary! I am so sorry this is happening for you. I dont have any advice, just hugs Ty was offered to me, but since I had horrible issues on other interferons I didnt want to start this one.

I wish you the best of luck. Also if you look to the TOP of this page, you will see posts for Tysabri users, many go there and it may be a place to consider checking out.

Laura,

I was on Tysabri for about 2 years but stopped (because of the cost associated with the infusion and the additional lab work which totaled six figures over that time, even though I had insurance and Biogen cut the Tysabri cost down to 20% for me).

My MS has been running its natural course of increased fatigue, mobility loss, and other simple losses. BUT, those functional decreases may have nothing at all to do with being off of Tysabri. It may (as I suspect) just be the natural course of MS.

I wish that I had more concrete data for you.

I would ask your physisican about other DMD's or experimental surgical treatments (angioplasty) that that could help.

I wish you the best.

-Vic

Dejibo,
Tysabri is an antibody NOT a interferon. I found this information at:

http://www.tysabri.com/tysbProject/t...abri/index.xml

The exact way that TYSABRI works is not fully understood but, TYSABRI is different and appears to work differently.
TYSABRI is an antibody, not an interferon (AVONEX® (interferon beta-1a), Betaseron® (interferon beta-1b), Extavia® (interferon beta-1b), Rebif® (interferon beta-1a)) or glatiramer acetate (Copaxone®)†
TYSABRI is thought to inhibit white blood cells from getting into the brain and attacking nerves
Keeping these cells from attacking nerves is believed to result in fewer brain lesions** that cause multiple sclerosis symptoms

Thanks everyone. I will ask neuro when we discuss all this on Tues. Hoping he is wrong noone seems to have experienced any ill effects from getting off Tysabbri.
Good luck to all
laurie f

I had 5 tysabri infusions back in 2007/2008. I had to stop because I was experiencing increasingly worse infusion reactions and also tested positive for antibodies. I did not experience any rebound problems. I actually felt alot better. MS has been fairly stable since that time. I am not on any treatments since I was also allergic to interferons and had too many IPIR's while on copaxone.

yes, this is true. I usually have a lot of side effects from drugs, and in fact had to go off copaxone because it made me too sick. But I have virtually no side effects from my tysabri infusions - i'm a bit woozy afterwards (in part because they give me benadryl right before the infusion) for a day or two, and sometimes a little digestive weirdness for a few days but often not. And that's it.

To me, the scariest parts are that it is strongly immunosuppressive and you are more likely to get infections - for example I've had several UTIs since starting 8-9 months ago - AND there's the possibility (which increases a lot around 2 years of treatment) of a very bad disease called PML. So I'm hoping to get off after about a year .

JD

I went to the dr today. He is putting me on Gilenya. I must be off Ty for 3 months. My dr is more concerned about the washout time. Says i must do Copaxone for 2 months then go on Gilenya. A dr in his practice took someone off Tty and di not put him on anything else and said it was the worst mistake he ever made.

Sheesh, from the frying pan into the fire. There are side effects with G, too. And why Copaxone, in between? I think I'd get a second opinion. JMHO.

I am not sure y Copaxone but i read on another site that someone else did the same thing. My Dr consulted an MS specialist because he was unsure what to do. I was on Copaxone for 4 years when i was first diagnosed. Later went to rebif before Tysabri. It may be that here is no washout period for Copaxone.
I am not excited about going on Gilenya and my husband does not understand y. Dr not excited either because so new but no other good options. They wont let me stay on the Tysabri which has been wonderful. By the way he never loved Tysabri either last month he put his second patient on it in the 2 1/2 years i have been on it he was leary but i did so well he offered it to someone else.
Take care
laurie f