CCSVI before HiCy

A board to discuss Revimmune as a potential therapy for multiple sclerosis

CCSVI before HiCy

Postby LR1234 » Sun Jul 19, 2009 7:59 am

Hi,

Mel had hicy before having stents placed. I wonder if having stents placed and then trying to apply for hicy might not be allowed.

I wonder if Chris or Mel could have a quick word with Dr Kerr to find out if they would ever accept patients that have stents. (I wonder because of the risk of blood clotting whilst receiving revimmune)

If that is the case maybe I should consider Revimmune b4 CCSVI.

What do you all think?
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Postby Axiom » Sun Jul 19, 2009 10:05 am

Disclaimer:
This turned out to be a long post that doesn't necessarily answer your question with any clarity. Sorry, I was just thinking via keyboard.
Maybe it will lead to others chiming in with better answers though. :wink:


I would assume if you were involved in a strictly controlled trial of either CCSVI or Revimmune, neither would want results muddied by having you try both until follow-up is complete; which can be years, depending on trial terms.

Of course if treatment is provided on a compassionate basis, you may have more freedom.

I know Stanford is not running official trials yet, although I have to believe they will be at some point. It looks like JH is getting ready to recruit for Revimmune trials. Will they continue offering treatment on a compassionate basis while running trials? I don't know, but sometimes institutions are limited in what they can offer outside an official study.

Just a couple of thoughts:

The folks at JH use a Hickman line to administer meds and draw blood. It's a venous catheter that is inserted at your jugular vein. A possible problem with stents in your jugs? I don't know, but worth asking the question.
Of course they could always use a PICC instead of a Hickman, or you could put up with multiple needle sticks, if they were willing to go that route. I'm sure the convenience of a line is preferable though (for them and for you)

I know that keeping an eye on what is happening with your blood is critical after both CCSVI and Revimmune. Honestly I think many PCP's would be intimidated with the follow up care for either, let alone both.

I'm pretty sure Mel is a year+ out from Revimmune treatment. I would think there would be more risk if you were looking at trying both CCSVI and Revimmune closer together, but that's not medical knowledge talking, just gut feeling. But maybe that's not your intent anyway?

Good Luck with your decision!
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Postby LR1234 » Mon Jul 20, 2009 5:19 am

I think both Revimmune and CCSVI together may be the ideal way of combating MS (obviously we have to wait to see how Mel does and others do) but if for whatever reason CCSVI does not halt the progression and the AI issue with MS prevails then I was just wondering whether you become untreatable in terms of Revimmune because of the risk of clotting to the stented/ballooned veins. Maybe the way to go is to have revimmune first followed by CCSVI repairs.
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Postby Axiom » Mon Jul 20, 2009 8:31 am

Maybe I'm missing something?

My understanding is that while revimmune targets white blood cells, it goes after any rapidly dividing cells. Collateral damage is red blood cells and platelets. The lack of platelets would reduce ability to clot blood, not increase it.

During and after revimmune treatment some of the same issues and concerns as being on blood thinners post stent surgery are key. ie: risk of bleeding, bruising easily, etc.

Just theorizing here, but if you were to have stent surgery followed immediately by treatment with revimmune; maybe coumadin, plavix, etc wouldn't be as necessary. The chemo would take care of the blood thinning bit.

Of course there may be other concerns, but it doesn't seem to me that more risk of clotting would be an issue.
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Postby LR1234 » Mon Jul 20, 2009 8:40 am

Hi Ax,
Thank-you for your replies, I am probably not explaining what I mean very well!

I was really trying to find out really if having CCSVI treatment would exclude me from being allowed to have revimmune.
Last edited by LR1234 on Fri Sep 20, 2013 1:22 am, edited 1 time in total.
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Postby chrishasms » Mon Jul 20, 2009 8:41 am

You are low on blood about 1 week. Then everything is pretty much back to normal within 2 weeks. I would suggest Revimmune first but the more I am looking at CCSVI the more I am thinking if you did that you would not need Revimmune.
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