Has anyone stopped Tysabri for any reason?
 

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 :hug: 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. :hug:

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?:eek: I think I'd get a second opinion. JMHO.:hug:

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

Hi -- I may be going off Tysabri soon and switching to Gilenya. If I do I will be off it for 60 days (which I do anyhow since I get it every other month). Then on day 60 I will have 1,000 mg. of steroids IV and on day 90 I will start Gilenya. The steroidS are a safety measure to prevent relapse or the rebound effect. I always thought that copaxone took several months to kick in and work. Good luck! Keep us posted. :)

Natalie

I also thought that when i went on Copaxone originally 10 years ago they told me it takes a few months to syart working..

You mentioned you do Ty every other month, do you have any problems in between?

Thanks and good luck
laurie f

I went off Ty to try Copaxone again and that didn't last a month. Heck with daily shots.

I've been back on Copaxone and off Tysabri for almost a year and a half and doing great.

I had my bi-annual checkup with the neuro last week and all of my neuro checks were great. He didn't mention anything better than Copaxone so I'm staying with it for now. He did tell me that there are many more cases of PML and he doesn't think Tysabri is safe. I reminded him that I'm doing better on Copaxone than I did on Tysabri. He asked me about my worst symptom and I told him it is definitely fatigue but I'm grateful because things could be much worse.

I don't argue with anyone who is doing well on Tysabri and aware of the risks. If I were in that position I know I'd do the same.

I visited an MS specialist last week, referred to him by my neurologist here. I'm set to go back this week for a blood test to look for the virus that causes PML. Last week, I had my 19th infusion and I've never been checked for the virus.

I've never had a reaction to the TY. If I am virus free-I want to stay on TY.

I've never heard of anyone getting TY every other month. I guess the doctors are trying out different things on different people. My neurologist mentioned at my last visit that studies suggest people on TY for two years should take a six-month break from it. I had never heard about that either.

The MS specialist was great. He spent 50 minutes with me, first going over my past MS history, then a complete neuro exam, then walking up and down the hallway without my Rollator and without Monty, my service dog. In April, he's set up an MRI of my brain, cervical spine, and thoracic spine with and without contrast, which sounds like we'll be there a very long time.

I had to be off Betaseron three months before I could start Tysabri.