Quitting Tysabri after 7 infusions

[KO4BG]

My wife is having a hard time of it with the Tysabri, she feels like crap more than she feels good. At times we think its working good and then there she goes again almost as though she's having an MS flair. I think she has only had 1 good month out of the 7 she's been on the Ty. She is seriously considering quitting and just taking the Steroids. Has anyone ever stopped Ty before and what type results did you have? Ever since she started she has felt terrible and before the Ty and between the Beta Sarron she felt great.
Woody

[jilly]

help

this is what really scares me about starting this drug!! I already feel like this. I don't know what to do. I want my life back. I really hate feeling like crap!! Please help me, with what evryone thinks, who's on this drug....... thx jilly

[CasinoKathy]

Woody - sorry your wife doesn't feel good while on Ty. I haven't had any bad side effects from it. From the start it has made my weak leg bend better while walking.

If you both don't think it's worth being on - and not everyone benefits from it, yea- I agree to move on and try other treatments.

What does her neuro think?

[cocogirl]

Ty doesn't cure MS it slows or stops the progression. If the damage is already there, there will continue to be troubling times.

I am on Ty and in 23 mos. there have been no new lesions and that means no worsening of sxs for me and no new sxs.

I will stay on it because I don't want to continue to go downhill. If if should stop working and I start having more damage, I will switch.

[notmyms]

if she quits

Woody,

If she quits Ty please have her consider a different DMD. She can't stay on steroids all the time. And even if she only takes them during a flare, she could have cumulative bad side effects.

Also, as I understand it, steroids do nothing to actually slow down the disease. They can shorten the time of bad symptoms during a relapse, but they do not prevent future lesions and relapses. The DMDs do slow down progression of MS and prevent brain and spinal cord lesions. So I hope she'll take one.

Sorry she's having a bad time with Ty. Best of luck to you both as you make this decision. She is so fortunate to have you, someone who cares.

[shalimar]

Steroids can do a lot of damage if you take them for too long. I had a whole bunch of treatments with them cause of my frequent flair ups and am paying for it now. All my teeth started crumbling away, I have had one hip replacement and need another, I have osteopenia, which is one step before osteoporosis. If not the Ty, at least one of the other meds that are out there or even one of the new pills that may be approved this month.

[Sis]

Worse symptoms after starting Tysabri

I just had my fourth infusion. I changed from Avonex to Tysabri because in the last year I started having more difficulty walking although no new lesions. Since I started Tysabri I've had greater numbness in my legs, more problems with fatigue, greater weakness in my legs and my right foot in particular has gotten unpredictable.

Has anyone else had worsening symptoms after starting Tysabri? I am told it takes six months to become fully effective or "stable." Did any new symptoms get better or go away with time?

Any info would be helpful. Thanks.

[0485c10]

I have read post of a few people who couldn't tolerate TY---they were mostly gastro intestinel & diarrhea. At first I said no that can't be from Tysabri, it must be from something else---egg on my face it sure can.

I feel best the week before my infusion and worst the week after--it kind of worries me that I feel best when Tysabri is at its lowest concentration in my body.

I'm assuming the time I feel best is because of the time I felt worst. I talked to the doc about going of TY. She's a smart woman. I suggested copaxone. I hadn't done copaxone before. She said not copaxone she has a different on in mind. But she wouldn't tell me which one it was---so I stay with the devil I know rather than switch to one I don't know.

I was using betaseron, it worked well for 3 years and then stopped working well---so I can't go back to that one. I'm kind of floating in the ocean hanging on to my life vest, trying not to be seen by the sharks in the water....my neuro is one smart woman not telling me whats next.