CCSVI and Interferons

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

CCSVI and Interferons

Postby lionheart » Thu Jan 28, 2010 11:16 pm

Hi, all!

I am sorry if the topic has been discussed already, searched but couldn't find any reference..

I am interested to know what happens if we are on Intereferon treatment? Are we still qualified for the Liberation procedure? If yes, what afterwards? Do we stop or continue?
Because if we are ballooned, put stents into, etc but still go on with the interferon...what would be the point? We'd never know whether the halt of the progress (hoping there's such) is due to the procedure or the regular treatment.

Reading this topic throughout, haven't come across such a case. Perhaps all of you who have had the Liberation weren't using any of the antiinflammatory drugs...?

Perhaps those of you who have been through all this could share their experience and knowledge.
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Postby costumenastional » Fri Jan 29, 2010 2:35 am

Some of the liberated patients were/are on medication and some are not. Same as non liberated people. After liberation many continue to take meds cause it is not sure yet if liberation stops ms.
I have had campath and i am to take more in a few months. If my veins should be found mangled i wont take any more meds. At least that's the plan.
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Postby NotSoSick » Fri Jan 29, 2010 6:11 am

I am interested to know what happens if we are on Intereferon treatment? Are we still qualified for the Liberation procedure? If yes, what afterwards? Do we stop or continue?
Because if we are ballooned, put stents into, etc but still go on with the interferon...what would be the point? We'd never know whether the halt of the progress (hoping there's such) is due to the procedure or the regular treatment.


I'm no expert, but I believe the original Zamboni study included folks on the DMDs. The NMSS (in the US) is warning people away from stopping treatment; see

http://www.nationalmssociety.org/news/n ... x?nid=2206
(Q&A at the bottom.)

I read this as: "Don't stop your treatment right now." I also read it as: "Later, when we find out that treating CCSVI makes everyone question why they are taking these drugs, we will address this issue."
:wink:
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Re: CCSVI and Interferons

Postby berriesarenice » Fri Jan 29, 2010 6:59 am

lionheart wrote:Because if we are ballooned, put stents into, etc but still go on with the interferon...what would be the point? We'd never know whether the halt of the progress (hoping there's such) is due to the procedure or the regular treatment.


Lionheart, because the MS treatments out there only slow MS progression, and do not halt it, a complete stop to progress (especially done on a large scale, and over time) is completely unprecedented regardless of what drugs anyone is taking. The larger the scale (more people/more studies we have going at once), the less time we need. After having their veins opened, 100% of the MS patients stopped progressing EXCEPT when their veins re-stenosed. Every single person who had further MS progression in the 2-3 yrs since the procedure also had re-narrowing. “Open veins” and “no progression” were perfectly correlated in over 300 people of all types of MS. In terms of odds (not medicine, just straight-up betting odds), this is incredibly significant.
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Re: CCSVI and Interferons

Postby Cece » Fri Jan 29, 2010 12:03 pm

berriesarenice wrote:Lionheart, because the MS treatments out there only slow MS progression, and do not halt it, a complete stop to progress (especially done on a large scale, and over time) is completely unprecedented regardless of what drugs anyone is taking. The larger the scale (more people/more studies we have going at once), the less time we need. After having their veins opened, 100% of the MS patients stopped progressing EXCEPT when their veins re-stenosed. Every single person who had further MS progression in the 2-3 yrs since the procedure also had re-narrowing. “Open veins” and “no progression” were perfectly correlated in over 300 people of all types of MS. In terms of odds (not medicine, just straight-up betting odds), this is incredibly significant.


Well said.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby mshusband » Fri Jan 29, 2010 12:08 pm

I 100% agree. That's why this is so exciting. If it can stop it, your body can at least heal some - which seems to be what everyone out there is saying.

If you follow-up regularly and keep your veins open, it could be a long-term stop! Over time, Biogen (or the Meylin Regeneration group) is going to get something out there that heals other parts - if not stem cells.

Once that happens, MS goes the way of polio ... we are really living at an incredible time for all of this to be happening!
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Postby thornyrose76 » Fri Jan 29, 2010 12:20 pm

A nurse (MS clinic) informed me 2 years ago that the injection interferons weren't quite as effective as they first initially thought- meaning slowing progression. I was on Betaseron for about 5 years-haven't taken anything since. It didn't do anything for me and apparently other people as well.n Im 33.
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Postby cheerleader » Fri Jan 29, 2010 12:41 pm

I've been open with the fact my husband chose to remain on Copaxone, even after having his jugular veins opened with stents. We still do not know how long the immune system remains active after opening the veins, or the complete picture of how the blood brain barrier heals after years of reflux. He would rather be safe than sorry. This does not invalidate the fact that he had CCSVI and two severely occluded jugular veins which are now opened....but being the first in the US with this procedure was risk enough in his eyes. Only time will tell if the disease modifying meds help in conjunction with CCSVI treatment.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Algis » Fri Jan 29, 2010 7:15 pm

It is reasonable to assume that the immune system remain negatively effective while the iron deposits are still binding in excess to the myelin?
This independent of the veins open or not.
I don't know if the iron can be eliminated at that stage or if the myelin needs to renew its structure naturally.
Experience and time will tell I guess.

Be well!
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