In light of CCSVI, start Copax or not?

Lo · Post by Lo » Tue Apr 20, 2010 3:09 am

That is the question that I am asking myself. I am recently diagnosed and am questioning the value of starting Copaxone given the historic and current research on the vascular nature of this disease. Any thoughts?

patientx · Post by **patientx** » Tue Apr 20, 2010 6:48 am

Any thoughts?

Well, I will give you a few....

Though it appears much research has been done into CCSVI, remember that thisisms and the internet boards in general represent a small proportion of what is actually going on. Only a couple of people have actually published anything on CCSVI, and repeatability in science is one of the most important things.

In the recent webcast on CCSVI sponsored by the NMSS, both proponents of CCSVI, Dr. Zamboni and Dr. Zivadinov recommended that MS patients continue with their treatments, whatever they might be, whether they have had CCSVI treatment or not. Dr. Zamboni's wife continues to use a DMD (not sure which one). The first 2 patients treated at Stanford continue to use Copaxone.

So, while the decision to use Copaxone or another DMD is a personal one, you shouldn't let CCSVI enter into the decision. The concept is still pretty much in its infancy. If nothing else, you will be buying time until the treatment is shown to be helpful and becomes mainstream.

Greenfields · Post by **Greenfields** » Tue Apr 20, 2010 6:58 am

CCSVI is not a cure, and DMD may still help and no one has recommended that you stop (or don't start).

Cheers

daverestonvirginia · Post by **daverestonvirginia** » Thu Apr 22, 2010 10:52 am

I have been on Copaxone for over four years now and I am doing very well. I have been following the CCSVI developments, but I do not see being able to be treated for some time yet. I plan to stay on Copaxone until we find out what the deal is with CCSVI treatments.

Quest56 · Post by **Quest56** » Thu Apr 22, 2010 3:42 pm

I've been using Copaxone since 1998. I was treated for CCSVI last September at Stanford. I don't consider the CCSVI treatment a cure, and I plan to continue using Copaxone indefinitely.

--Tracy

Lyon · Post by **Lyon** » Thu Apr 22, 2010 3:59 pm

Absentee · Post by **Absentee** » Thu Apr 22, 2010 4:17 pm

I agree with what everyone is saying. You'd hate to have been waiting for the CCSVI to start copax, then get a great big old relapse and suffer irreversible damage from it. I surely wish I did not sit around trying to manage this damn condition without my copax crutch. Now I do regret it some.

zap · Post by **zap** » Mon Apr 26, 2010 7:17 pm

Without CCSVI in the picture at all, I still decided to say 'no' to Copaxone. The likelihood of positive effect was outweighed by the likelihood of side effects, cost, and being reminded at needlepoint every day that I "had MS."

YMMV.

globab · Post by **globab** » Tue Apr 27, 2010 9:10 am

curious what side effects you were told?
i was on rebif for a couple years, now that is side effects.. i have been on copaxone for a couple months, with no side effects .... other than burning sensation right after my injection....
i dont find that my daily injections remind me that i have MS.... for me it is simply that way, i have MS and i need an injection daily to help it stay under control some what.....
i think about my MS daily, and it is not with my injections..

and i am one with the mildest case of MS.... as all my other family members walk with walkers, or have hard time walking, doc's telling them to stop working etc.....

sorry i was way off topic I am sure, hehe...

the meds are always there if you change your mind......

zap · Post by **zap** » Tue Apr 27, 2010 9:21 am

The bigger piece for me really was not the negatives, but the likelihood of positive effect. I think that it is pretty useless drug, hyped up with fear tactics more than supported by statistically significant evidence. I'm not gonna argue about it, but that's what I believe.

No relapses in 3-4 years since I started not taking immuno-modulating drugs, so it must be working, right?