Switching to Tysabri from Copaxone RRMS??

[Toxophilite]

Yesterday I had another bout with what looks like ON (still ongoing). Neuro took me in yesterday and mentioned the possibility of switching to Ty. This is my only episode since I have been on Copax which has been since March of 08. I originally got ON in Feb of 08 and after going through MRI and spinal tap I was dx'ed with RRMS. I don't have a ton of info on Ty as of yet but what little reading I can tolerate with my current vision I gather Ty is more of a "last line of defense" approach.

So with no instances in about 4 1/2 years is seems strange that she would consider switching to something that appears to be so much more radical than Copax.

Has anyone else ever heard of an approach like this or experienced a similar line of treatment? I know nothing about Ty but I can tell you that I feel as though I have a fairly (at least has been) mild/non existent symptoms since my dx. I do get a bit affected by excessive heat at times but other than that I never really felt like I even had MS. Since my dx I have gone through a round of the P90x workout and ironically enough after a hiatus from constant exercise/weight training I planned to start another round of it yesterday.

So I don't consider myself generally affected by MS in a lifestyle altering way. As a result I am concerned about the idea of switching to Ty especially since I have tolerated Copax fairly well in terms of side effects. It appears that the side effects of Ty are a bit more common and more extreme. So my concern is why bother taking this line?

[ru4cats]

When I was diagnosed two years ago, my neuro wanted me on Ty even though my only sx was right leg weakness. I did have a few lesions in my brain and on my spine. She had seen Ty's effectiveness and believed it was best to hit it hard to stop it cold. My MRI's have been stable, but my right leg weakness has continued to progress; however, I feel SO fortunate I haven't any other "nasty" sx. I am JC- and plan on staying on Ty for the forseeable future. Ty has been really good to me. Other than a stick every 28 days, I have absolutely no reaction to Ty. Walk in, walk out 2 hours later, and live my life until my next infusion. I do take Ampyra, but that is all. Definitely, not extreme. Good luck!

[Ntombi]

After talking with my neuro for close to a year, I'm switching from Copaxone to Tysabri. I've been on Copaxone since Fall 2005, but not only have I had several flare-ups, I've had constant bruises (deep muscle bruises that last a couple weeks each). I got so sick of living with bruises all over my body that I stopped taking it earlier this year. Because of my compliance issues, we decided that the negatives outweighed the positives of being on a less "intense" drug.

We discussed switching to Gilenya or Tysabri, and because I tested negative for JCV, I decided to go with Tysabri. I'm only 38, already unable to work and need some in-home support, and I want to take the best chance for long-term independence. For me, that's Tysabri.

As for your neuro's recommendation, my take is that if you're still able to work and not have big effects of MS, go with your best chance to stay that way.

[moolk]

I just had my third infusion and it has done wonders for me. I hope that you have good results too!!

[LuNell71]

I started on copoxone, had major bruising & inflammation around shot area on my thighs (stopped using my legs), 10 months later another flare, another lesion. Started Tysabri, 2 years later, now 2 more lesions - brain & cervical. So do I continue Tysabri? Do I stop? I am turning 60 this month , on disability, still mobile at this time but slowly getting worse as time goes by. I seem to have everything going on physically in varying degrees except ON.

Not sure what to do, I don't have anyone who really gets it, family thinks I should continue as I seem to run out of gas before 4 weeks, then it's time to hook up to Ty & I do have a little bit more get up & go. Is 2 years better than 10 months? Not sure if I should continue Ty??? I've read about the withdrawal symptoms, is this true?

Any input would be greatly appreciated.

[lindaincolorado]

I will get my 72nd infusion next Thurs. Tysabri has done wonders keeping ms at bay for me. I wish I could've been in the trials, as I believe I would still be walking 3 mi a day and dancing like my heart desires. Ty has halted my progression but, didn't "fix" my R leg

Maybe your neuro is attempting to halt your ms ?

I am very grateful to this med

LuNell71, have you talked to your neuro about your concerns?

[LuNell71]

I have talked to the Np at my doctors office. I will have another mri in October just to confirm the cervical lesion. She said that it was 2 years since my last lesions were confirmed, with the copoxone it was less than 10 months. And of course it was my decision and at this time there is nothing else.

[LL60]

LuNell71

My doctor at my last visit said that 60% of people who go off of Tysabri have a rebound effect.

Which sort of made me mad. In all my research the rebound effect was the only conern I had about starting Tysabri over 3 years ago. At the time she told she had never heard of such a thing. Since you can't believe everything you read on the internet, I trusted her, and it did turn out very well for me. Tysabri has been almost like a miracle for me. But I did ask her why she told me that there was no rebound effect 3 years ago? She just said, "I know more about Tysabri now." Doesn't give me a lot of confidence.........

Linda, so glad you continue to do well. How often are you getting tested for the JC virus?