If you were me would you start Tysabri?

[batman12]

Hi there!

I have been recently diagnosed - I had about 5 relapses in a 6 month period.

Since then I have started betaferon and things seem to be settling down. I have had a complete recovery from each relapse and have an EDSS of 0 at the moment but do have extensive demylination on my mri.

I am concerned that betaferon is not aggressive enough and will not have a significant long-term positive impact on my disease.

In discussing with my neuro he said that he would prescribe me tysabri if I wanted it but that I should have a think about it because of pml etc etc (although he didn't seem to think that was such a big deal)

At the moment I am leaning toward starting tysabri - what would you do?

[ewizabeth]

If I were you, and the beta was working for me, I would stay with it until if or when I needed something stronger.
The beta has a much longer track record of safety.

I switched to Tysabri thinking that stronger would be better but it acually made me feel worse. I went back to Copaxone because it always worked for me.

Of course it is totally up to you. Good luck with whatever path you take.

[dutchboy]

go for it

if i could have gone on ty when i was disgnosed 22 years ago ,i beleave i'd be working and living a normal life ,we are all 20/20 at hindsight.

[lindaincolorado]

Hi batman, I have had a problem with my R leg for about 8 years ( I was dx- diagnosed in 1988) starting mildly to it dragging/-foot drop and I can't lift it about 5 years ago. I have been on Tysabri for 4 yrs and believe if I could've started Ty 2-3 years earlier I would still be dancing like I love and going for 3 mile walks. Who knows but, what I do know is I have not progressed, my MRIs have shown no new or active lesions and I have better balance, more stamina and less fatigue which adds up to a better QOL-quality of life.

We all know our own body best - I knew it was time for me to change from Copaxone to Tysabri. You need to decide what is best for you. I did ask my husband and adult children their opinions and then I made "my" decision.
Good luck with yours!

[MrsChip]

I agree with Linda - I was dx'd in 1994 after 3 years of symptoms mainly sensory. I've tried Inteferon and Copaxone but things are getting worse for me now - not recovering well from my relapses so Im starting Tysabri soon. Given the choice I would have started it earlier as its about keeping you where you are before the damage mounts up. As your scans show a lot of lesions, I would seriously consider Ty as it interrupts the immune systems ability to get into the brain and cause damage.
However, if inteferon seems to be reducing your number and severity of relapses, it may be enough to manage your disease at this stage.
Like Linda said, you do know when the time is right for you to go on something stronger and its usually when the CRABS aren't improving your relapse rate.

Good luck whatever you decide

[batman12]

Thanks so much for all the input and advice.

I think that I am going to start Tysabri - I plan to take it for 2 years until Campath is avaliable - got to preserve as much brain as possible!

I don't think the crabs really help - fiddling while rome burns

[MrsChip]

I'm thinking the same Batman - Tysabri for now and then hopefully switch when something safer like Campath is available - there are loads of new drugs being trialled at the moment - at least another 3 Monoclonal Antibody drugs, Statins, Ldn, Fingolimod, Cladribine to name a few.

Preserve brain!! :-) The CRABS did diddly squat for me

[4boysmom]

I thought being on the best would keep me at my present level also!

But things happen, and not always for the best. I developed neutralizing antibodies to Ty. So I was only able to be on it a year.

I am one of the few people that were actually on it a year, and had more lesions.

I'd be like Elizabeth and stay on whats working and not be so quick to change meds. I did it that way, and now I can't take Ty, Avonex, Rebif. I'm on Copaxone now, and will stay on it as long as I can. I had one lesion get bigger over the year, but I dont really have any symptoms to go with the lesion growth.

Just be cautious about changing meds, and changing meds. It soon leaves you with no meds to go on!

[Cate Power]

If under age 40-45, I would say wait given the PML risk. If older, I would go for it abd try to shut down profession of those b$%#@&%ds that create the humongous foundation of the M.S. iceberg.

I am trying desperately to find a way to get on it. I am one of those who takes a contraindicated RX (Prednisone) for the other immuno beast in my genetic cesspool -- Rheumatoid Arthritis.