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Tysabri
OK guys I need info..... anybody here on Tysabri? Anybody been on it previously? Any first hand input is helpful, as well as any info in general. My neuro tossed it out at the appt today - COMPLETELY blew me out of the water. Never saw it coming. The Rebif makes me sick and he's concerned that things keep advancing and I've never really had the elusive remission... :)
He explained alot about Tysabri - truth vs hype. He is trying to do whatever he can to try to keep me from having more serious disability... he's very concerned apparently. Who knew? :) He has about 18 pts on it for the past 2 yrs... all have either improved or held steady, and these were his worst pts in terms of the MS. They explained some of the TOUCH progam to me..
Needless to say, I have alot of research to do so I can make an informed choice on what is best for me. My next appt is in 6 wks, so that gives me some time. Thanks you guys!
Rita
He explained alot about Tysabri - truth vs hype. He is trying to do whatever he can to try to keep me from having more serious disability... he's very concerned apparently. Who knew? :) He has about 18 pts on it for the past 2 yrs... all have either improved or held steady, and these were his worst pts in terms of the MS. They explained some of the TOUCH progam to me..
Needless to say, I have alot of research to do so I can make an informed choice on what is best for me. My next appt is in 6 wks, so that gives me some time. Thanks you guys!
Rita
I too am JCV positive, I have had 3 infusions of Tysabri . Before I started it my walking was really bad with foot drag and it has not improved, I just wonder if it ever will. Do you have walking problems?
You found a pretty old thread .. :-)
I did decide to give Tysabri a whirl. I will get #48 tomorrow. I am JC positive but am sticking with it for now. Still have issues both old and new, but we all feel it has helped slow down the parade, so that is a good thing.
Glad it has been helpful for you as well. Are you JC positive, too?
Rita
I did decide to give Tysabri a whirl. I will get #48 tomorrow. I am JC positive but am sticking with it for now. Still have issues both old and new, but we all feel it has helped slow down the parade, so that is a good thing.
Glad it has been helpful for you as well. Are you JC positive, too?
Rita
Go for it, for the past 5 years, Tysabri has given me my life back ...can't imagine my life without it.
My life is worth the risk of PML...before Tysabri, I existed, not lived!
Best of luck
My life is worth the risk of PML...before Tysabri, I existed, not lived!
Best of luck
I'm sorry you were hit with this, so out of the blue today. I think maybe I know how you feel. My neuro did the same thing at my appt in April, when I was also having trouble with Rebif and he said I should start thinking about Novantrone. I kind of felt like I had been punched in the stomach, and like you, thinking that I had been doing OK all things considered, meanwhile he is concerned about how active my disease course is and talking about aggressive therapy. In fact I did cry that whole day, and night, and the next day too. Then I started reading the studies and I calmed down quite a bit.
You and I were dx'ed around the same time, both had problems with Rebif, and now this. If you were also having double vision I'd swear you were my twin.
I don't know a whole lot about Tysabri other than that it has impressive results. I'm on Copaxone now but if I need to switch to something more aggressive, I want Tysabri to be an option as well. I'm not clear why he is leaning towards Novantrone...I was too overwhelmed to ask many questions that day. I know you know what I mean.
Good luck with your research. I will do some too and if I find anything useful, I'll send it your way. I subcribe to a MS journal and I believe there is quite a lot about Tysabri in the back issues.
It is good to know that these treatments are out there for those of us who may not do so well on the ABCRs. I know the idea of it is scary, but the results really are pretty reassuring.
Thinking of you,
db
You and I were dx'ed around the same time, both had problems with Rebif, and now this. If you were also having double vision I'd swear you were my twin.
I don't know a whole lot about Tysabri other than that it has impressive results. I'm on Copaxone now but if I need to switch to something more aggressive, I want Tysabri to be an option as well. I'm not clear why he is leaning towards Novantrone...I was too overwhelmed to ask many questions that day. I know you know what I mean.
Good luck with your research. I will do some too and if I find anything useful, I'll send it your way. I subcribe to a MS journal and I believe there is quite a lot about Tysabri in the back issues.
It is good to know that these treatments are out there for those of us who may not do so well on the ABCRs. I know the idea of it is scary, but the results really are pretty reassuring.
Thinking of you,
db
Thank you all for your comments and info.. :) I really appreciate it. I am in kind of a funk right now, but will write more soon...
Rita
Rita
One of my 2 sisters with MS is on Tysabri - for a year now- and doing fantastic! She was really hesitant to go on it, but sooo glad now that she did.
Penn
Penn
My sister has been on Tysabri for about four months now (was on Rebif for a year before which wasn't slowing down her disease and she had some kind of reaction later on).
She was beginning to feel some tingling of her toes in her foot with foot drop. She's not had any side effects--in fact, she feels more energetic after the infusions. She has more energy and feels better for about three weeks and she can feel her body needing the next infusion by the next infusion at the end of the third week (drained of energy by that time).
When she's getting her infusion with other patients on Tysabri, she says that it's the same story about the energy. One person used to be in a wheelchair and is no longer needing it--no new lesions for two years since beginning Tysabri.
I hope your insurance company approves it. My sister had to put up a fight (denied at first), but she says that it was well worth it.
Deb
She was beginning to feel some tingling of her toes in her foot with foot drop. She's not had any side effects--in fact, she feels more energetic after the infusions. She has more energy and feels better for about three weeks and she can feel her body needing the next infusion by the next infusion at the end of the third week (drained of energy by that time).
When she's getting her infusion with other patients on Tysabri, she says that it's the same story about the energy. One person used to be in a wheelchair and is no longer needing it--no new lesions for two years since beginning Tysabri.
I hope your insurance company approves it. My sister had to put up a fight (denied at first), but she says that it was well worth it.
Deb
Hey Guys... :)
Thanks for the thoughts, and I am going to check out that website tonite Kathy - you rock!!
Yeah... I was VERY shocked the doctor brought it up....it actually knocked the breath out of me for a second. To me, that was always something late in the game, you know? I thought I was doing OK... :) Apparently not, lol. I have wanted to cry all afternoon...it just totally threw me to think I was someone who may need that.
I was talking to my friend here at work and she said she thinks I definitely need something stronger, something that will help more. She said "Have you not seen how things have advanced in this short time? All the things you have going on?" Um, I guess not....lol. She started ticking off different things, and I started rationalizing them.. :) I guess I have just gotten used to alot of this...that it's just almost normal to me. She wants me to start sooner than six weeks.. she said the things going on now make her nervous.
The neuro asked how I felt in general - well, I honestly can't remember the last time I felt GOOD, you know? I just have days that are less bad and days that are worse.. :) He said he would like to see me be better over all, and halt the progression. Sigh.....
Gotta run for now - will get back on this evening....
Bye for now,
Rita
Thanks for the thoughts, and I am going to check out that website tonite Kathy - you rock!!
Yeah... I was VERY shocked the doctor brought it up....it actually knocked the breath out of me for a second. To me, that was always something late in the game, you know? I thought I was doing OK... :) Apparently not, lol. I have wanted to cry all afternoon...it just totally threw me to think I was someone who may need that.
I was talking to my friend here at work and she said she thinks I definitely need something stronger, something that will help more. She said "Have you not seen how things have advanced in this short time? All the things you have going on?" Um, I guess not....lol. She started ticking off different things, and I started rationalizing them.. :) I guess I have just gotten used to alot of this...that it's just almost normal to me. She wants me to start sooner than six weeks.. she said the things going on now make her nervous.
The neuro asked how I felt in general - well, I honestly can't remember the last time I felt GOOD, you know? I just have days that are less bad and days that are worse.. :) He said he would like to see me be better over all, and halt the progression. Sigh.....
Gotta run for now - will get back on this evening....
Bye for now,
Rita
Here is a link to the blog I found where Tysabri users weigh in, if you haven't found it yourself, or found something better.
http://blog.healthtalk.com/multiple-sclerosis/life-with-ms/tysabri-a-progress-check/
I'll be checking in, take care, my friend.
Kathy
http://blog.healthtalk.com/multiple-sclerosis/life-with-ms/tysabri-a-progress-check/
I'll be checking in, take care, my friend.
Kathy
Hey, Rita!
It's so good to hear from you! And WOW. Tysabri... It does make sense for you, I think.
I am pretty sure Jon M has been on it before. We don't 'see' enough of him, though, Dagnabbit! I'll try to PM him, to ask him about it. Hopefully he'll respond in time to let you know his experiences to let you mull over your choices.
Are you a little shocked that your doc brought it up?
Others will chime in, too.
Feel well, and take care! Talk to you soon,
Zilla* (Princess*)
It's so good to hear from you! And WOW. Tysabri... It does make sense for you, I think.
I am pretty sure Jon M has been on it before. We don't 'see' enough of him, though, Dagnabbit! I'll try to PM him, to ask him about it. Hopefully he'll respond in time to let you know his experiences to let you mull over your choices.
Are you a little shocked that your doc brought it up?
Others will chime in, too.
Feel well, and take care! Talk to you soon,
Zilla* (Princess*)
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