Tysabri

[Sam1106]

Hi All

I'm back asking advice again!

Last week I started my 3rd significant relapse this year, my specialist nurse is now talking about Tysabri. I was on Rebif for about 15 months and wasnt getting on with the side effects so I switched to Copaxone 6 weeks ago, which I'm quite happy with.

I looked up Tysabri when I got home and all I got was all the bad news about the PML patients. They say that theres a 1/1000 chance of getting it, that seems quite high to me. I couldnt find out much about PML except most people die when they get it.

I'm normally the sort of person who will give anything a go, but this really scares me, am I just being silly? or do I not know enough about the drug or PML?
Anyone had experiences with this?
Plz help x
Sam

[Deb61]

My sister has been on Tysabri since February this year.  She's quite sick right now.  It's not known if it is her reaction to Tysabri, a relapse, or something related to the surgery she had in June.  She's been having flu-like symptoms--sick to stomach, abnormal fatigued, headache, etc.  On Monday, she's going to her neurologist and will be getting an MRI of her brain to see what's going on.  My thinking is that she probably is having a relapse due to the operation she had in June--she really had a rough go of things with her operation to correct her foot-drop.  She's still not able to bear weight on that foot.  

The people she gets infusions with--some about 2 years, have stated that they haven't had a relapse since starting Tysabri and their energy level has increased.  One person has stated that she's able to walk now--something she couldn't do before.  

I wish I had more to share about Tysabri, but that is all I know just now.   We'll know more after she sees her neuro.

Deb

[Lulu54]

I don't know enough about Tsbari to comment but something my neuro told me last week when he gave me my dx sticks out.

He was emphatic that if I have new symptoms or symptoms flare I am to call him immediately and he will treat the symptoms with IV steroids.  He talked quite a bit about the copaxone taking time to work, and that it possibly will not stop the damage I already have from flaring.  He doesn't want to give those lesions a chance to do more harm than already done.  

Has your specialist talked about taking care of the symptoms in addition to the DMD?  I would ask.....

Lulu

[doublevision1]

You might try pm'ing Rita (aka "Cosmobirdy").  She had her first infusion of Tysabri just last week.  

I have not done a whole lot of research on Tysabri, although I did enough to know that if my MS continues to be quite active, I would rather try it than Noavantrone, which seems to be my neuro's preference.  The cardiotoxicity of Novantrone is scary to me, not that Tysabri is without its serious side effects, as you point out.  You are definitely not being silly to have such concerns.

For now I am holding steady since going on Copaxone three months ago.  Prior to that I had a short and unsuccessful run at Rebif.  Had to discontinue Rebif after only 8 weeks due to elevated liver enzymes.

Since you only started Copaxone 6 weeks ago, it really hasn't had a chance to do its thing.  I think the fact you started another relapse last week is not necessarily an indication that Copaxone isn't going to work for you.  It may just need more time.  One neuro told me he feels 6 months on Copaxone is necessary to really give it a fair trial.  Perhaps it is worth raising this point with your neuro, before considering a more aggressive approach?