"Waiting" for BG 12

[michelleric]

Saw Neuro after Tysabri 2 days ago.  I am still slowly progressing downward...:(

I am not thrilled w Tysabri at this point.  Was doing really well on it, from Jan 2010 until the summer when I lost my voice for 3 months.  Tysabri was  D/C then per Neuro.  In case that was a side effect.

I went back on Tysabri in  Dec.  My voice is still an issue.  Neuro doesn't know still if side effect, and is leaving it up to me if I want to stay on.  She would like me to stay on it, as there is no other alternative for me at the moment.

She was really hoping BG 12 was coming out soon, but she told me she just found out it will be another 10-12  months.

So that's the plan.  I so wish my voice was normal again, as I would like to stay on Tysabri, but am concerned that is the cause.

She also mentioned another new med coming out, but don't remember the name.

Michelle

[Cosmobirdy]

Michelle,

I'm so sorry to hear that Tysabri doesn't seem to be helping you much at this point.  How long have you been on it?  (I'm sorry, I don't remember.)  I am keeping an eye on BG-12, too - hopefully it will pan out to be as good as it sounds right now.

I'm also starting to investigate other things in the pipeline, like Lemtrada, Laquinimod, Tovaxin, Cytoxin, etc. - just to be aware.  I just had Tysabri #44, and since I'm JC positive, I know I'm dancing with the devil to a certain degree.  

Hang in there - sending you a big hug.... :-)  I''ve got you in my thoughts and prayers...
Rita

[Guitar_grrrl]

Aww, Michelle!  I'm so sorry Ty isn't doing it for you.  I'm hanging in there for when BG 12 comes out as well.  It sounds promising.

I used to loose my voice during flares, and the muscles around my larynx would be sore and tired any time I tried to use my voice for singing or talking.  I feel for you!  (((Michelle)))

[Lulu54]

BG-12 was submitted to the FDA for fast track approval, but that still means probably won'tbe on the market until early 2013.  I'm so sorry the tysabri is not kicking MS butt for either of you these days.

[rendean]

Dear Michelle,
I am so sorry you are having such such a tough time. Ty doesn't seem to  be working well for me either. It's up for discussion next Monday.

I am very sorry to hear about your voice as you have such a beautiful singing voice!!! I'm  always here to talk.

Love ya,

Ren