Discontinuing Tysabri due to worsening

lollipop · Getting to Know You... Joined: Dec 28, 2006 Posts: 18

It's great that everybody is having such good results with Ty, but I have just decided to STOP after 5 infusions, because of continued worsening of symptoms. No improvements at all... not even a tiny bit! Now, I should consider myself "lucky", since I only have leg weakness and inability to walk unaided. NO other symptoms, except poor circulation in feet due to lack of walking. I have been on a steady decline over the past 5 months, so I can only conclude that it's the Ty!?
My neuro suggested trying IV-Ig instead... wonder if I should just stay away from the meds? Thoughts?

gabelle · Posted: Fri Feb 23, 2007 9:34 pm Post subject:

You are only the third person that I have read about that has had negative results with Tysabri. I have had 4 infusions with worsening of symptoms. My worsening has also been with the lower extremities. I tend to agree that it is the Tysabri while my neuro has questions. I have tried all of the injectibles and experienced a worsening of symptoms (in my opinion) with each. I had another MRI a couple of weeks ago and it is unchanged (basically no change in the last 2-3 years). My concern is at this rate, another couple of infusions and I will be bed bound. I also am considering using no medications. As I listened to the health talk last pm about MS progression, I came to the conclusion that they really don't know what these meds can and can't do. I really don't know what is the best plan for me, but since I have gotten worse with the Tysabri, I would rather stay functional at this point than take another infusion and risk any further disability progression. My increase in leg weakness put me on the floor today (in a public restroom), so today has been very trying and is making my decision to stop the Tysabri easier.

ewizabeth · Posted: Sat Feb 24, 2007 1:42 pm Post subject:

I'm sorry for both of you in having poor results with Tysabri. I had less than stellar results with AC&R. My neuro doesn't even suggest Tysabri for me. I can see me having unpleasant side effects too somehow. I think if there's a chance of a weird or unpleasant side effect, it's going to happen to me. In my case, it really does seem as though the treatments makes the disease worse for me, IVSM included.

If I don't stay in the Tovaxin trial, then I might be taking a break from the meds for awhile. That's an option the doctor suggested I think about. ...Especially since I had an unremarkable MRI last week (and I have been off meds for two months.)
_________________
Take care,

Ewizabeth

Previously Avonex, Rebif & Copaxone
RRMS
~Tysabri since 6/04/07~