OK, Let's try Betaseron.

[Guitar_grrrl]

I saw my neuro last week.  I'm going through a flair, though not big enough he wants me on IVSM or any thing, but he definitely wants me on SOME sort of immunomodulator.  So I'm trying Betaseron, next.  The phone calls are flying.  I should be on it soon.

I don't know if he'll put me back on Tysabri again.  Seems he's taken most of his pts. off it.  I'm willing to try it...

[anon07072023]

Well, at least your neuro is watching out for you and willing to switch you to something else I guess. You don't want to mess with PML, that's for sure!  

I hope the Betaseron will help you!

-Kelly

[Guitar_grrrl]

This was clipped from the NMSS site on the Tysabri and PML Update:


• Although the absolute risk for PML in patients treated with Tysabri cannot be precisely determined, the U.S. FDA and the company have released data suggesting that the risk increases with increasing time on therapy.

• The company changed the label of Tysabri to indicate that the risk of PML is increased in patients who have been treated with an immunosuppressant (such as mitoxantrone, and less commonly, azathioprine and methotrexate) prior to receiving Tysabri. This increased risk appears to be independent of Tysabri treatment duration.

• Based on the cases so far, the company stresses the presence of gadolinium-enhancing lesions on MRI does not exclude the possibility of PML. Likewise, the absence of JC virus DNA in the spinal fluid does not exclude PML.

This info is also posted on this site: http://medinfo.biogenidec.com/

That last sentence alone was sort of the clincher for him  My neuro is just being extra cautious.  I don't blame him.  The blessing is I didn't have any flairs in the year I was on Tysabri, but the curse...well, who knows (literally!).

[shermay]

Hi GG :)

Sorry to hear that your going through a flair.

Why has your Dr., not put you back on TY?

I thought your "holiday" from TY should have been over by now?  it would be interesting to hear why your Neuro is taking his patients off the drug?

Bisous,

Debs X

[sllowe]

Hi G-girl,

A well known MS doc here in NJ is big on Beta. Sure hope it serves you well, Grrrrl.

Feel better soon :( and get you some rest.
-Shell

[HVAC]

Sorry you are in another flair.

Alex

[Sumanadevii]

Guitar, do you know why he has taken his patients off Tysabri?  I am just curious.

I hope they get you on something and soon.  Too much damage can be done while we are waiting.....