CCSVI and Capaxone

PatGF · Post by **PatGF** » Tue Feb 15, 2011 12:00 pm

I've seen many posts about people wanting to discontinue Capaxone after CCSVI. My response is that it is too soon to know. I called TEVA and talked with their medical research team. They did not have a positive view of CCSVI because the people they have spoken to did not have a positive response. Some are seeing practioners that may not be part of a research protocol, so the approach may make a huge difference in results. I did encourage TEVA to research Capaxone in CCSVI patients - it is an immune modulator - and may still be useful. I read a few months back a news article stating that a research team was looking into Capaxone as being adjuctive therapy to CCSVI. I can't find it now. Did anyone else see it?

EJC · Post by **EJC** » Fri Feb 18, 2011 6:45 am

My partner (Emma) has been on Copaxone for a little over a year.

In that time she's suffered some of the the worst relapses she's had in some years (in time and severity).

Emma had the CCSVI procedure on 27/12/2011 the surgeon recommended she continue with all pre procedure treatments and/or drugs. This has more to do with continuity and attributing results to the procedure itself than anything to do with the drugs.

We're now nearly two months on post procedure (which was pretty positive for Emma) and she's not injected for the last two days at her own decision.

Copaxone really doesn't seem to be doing anything to help her whatsoever.

She is going to try a week without at a time and see how she proceeds.

PatGF · Post by **PatGF** » Fri Feb 18, 2011 9:04 am

I'm not ready to give up Copaxone until I have my one year follow-up MRI to compare to my research MRI performed at BNAC. The medical researcher I talked to at TEVA told me the strangest thing, he said "We really don't know how Copaxone works." That has me thinking...

EJC · Post by **EJC** » Fri Feb 18, 2011 12:50 pm

Part of the reason Emma chose to quit was due to the manufacturer not actually understanding how it works or what it even does, nor her Neuro, nor the MS nurse.

We were actually at a loss to why she was taking it.

Bender · Post by **Bender** » Sun Mar 20, 2011 12:20 pm

Eh whatever, I trust that the experiment to determine that it worked was done right.

I actually think it's kind of funny that they're not sure why it works. I'm probably the only person who thinks this way, but it makes me like it more.

Although I have to admit I really enjoy screwing with the nurses at shared solutions over their not knowing why it works.

EJC · Post by **EJC** » Mon Apr 25, 2011 5:31 am

Emma now 4 months post CCSVI procedure and two months off Copaxone. So far no relapses.

Probably more to do with a succeful CCSVI procedure than a drug that no one really seems to understand.