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HiCy/Revimmune at Johns Hopkins

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Old 05-23-2008, 07:22 PM #1
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Default HiCy/Revimmune at Johns Hopkins
Hi everyone,

I mentioned this in a thread about a month ago? Lots of people have issues with this - and there's been much debate. I'm not sure why I'm opening this up again....but when I mentioned it on the Tysabri thread, Av8r seemed to think I should Tee hee.

Anyhow, I am in the process of making arrangements with the doctors at Johns Hopkins to have this treatment!

It is a high dose of chemotherapy given over 4 straight days and then they monitor you daily for 2.5 weeks or so.

Basically, they kill your entire immune system and then build it back up.

As far as I'm concerned, it is the closest thing there is to a cure right now. I'm very excited and eager to have this done.

I don't think anyone on NT has had this treatment or looked into it...haven't heard much on here about it. Anyone? Anyone? Bueller? Bueller?

~Keri
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Old 05-23-2008, 07:31 PM #2
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Why don't you explain more about what it is, Keri. Links to Revimmune? It's not been talked about here at all. It would be good if you could provide us some more information.

I have read a lot about it and know that there is quite a waiting list to get the treatment at JH as I believe this is the only site that is currently administering the treatment?

Thanks!
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Old 05-23-2008, 08:40 PM #3
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From another forum, there is someone who has qualified so far for JH, and another who was told there is a one year waiting list. From what I have read, you also get put on a DMD after you get 7 shots to stimulate your own stem cells to grow.

They don't get destroyed because they are protected by an enzyme. The purpose of the DMD after this is to try to retrain your immune system not to develop MS again.

That is my understanding of it. Also I believe you have to "rest" for a month after you do the first part. Hope that helps.
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Old 05-23-2008, 08:47 PM #4
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Quote:
Originally Posted by starfish View Post
From another forum, there is someone who has qualified so far for JH, and another who was told there is a one year waiting list. From what I have read, you also get put on a DMD after you get 7 shots to stimulate your own stem cells to grow.

They don't get destroyed because they are protected by an enzyme. The purpose of the DMD after this is to try to retrain your immune system not to develop MS again.

That is my understanding of it. Also I believe you have to "rest" for a month after you do the first part. Hope that helps.
Is that what you read from someone else or from the Revimmune site?
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Old 05-23-2008, 08:57 PM #5
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Default Articles about Revimmune
http://www.accentia.net/science/revimmune.php

Quote:
What makes this MS trial different from any other filed with the FDA, says O’Donnell, is that it will use “restoration of function” as its endpoint. That’s based on results of a pilot study by Kerr that used HiCy to treat nine patients with RRMS—patients for whom all other treatments had failed.
http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm
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"Thanks for this!" says:
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Old 05-23-2008, 09:04 PM #6
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I am interested to hear more about this because Its also got some aplications for Autoimmune disease as well. Keep us posted.
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Old 06-16-2008, 02:44 PM #7
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Hi Red,

Have you actually gone thru this procedure yet? I recently contacted Johns Hopkins about this for my 29-year-old son.

Thanks,
Red
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Old 06-16-2008, 06:28 PM #8
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Quote:
Originally Posted by Rednebulab View Post
Hi Red,

Have you actually gone thru this procedure yet? I recently contacted Johns Hopkins about this for my 29-year-old son.

Thanks,
Red
Good question, RP. You even brought a nice person out of lurkdom, to ask it.

What's new, have you been OKed for the procedure?
Thinking about you and hoping for you..
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Old 06-17-2008, 01:30 AM #9
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Default Heading to Baltimore in 2 weeks
I am heading back to baltimore on June 29th. I will enter the hospital on July 3rd and begin treatment.

To the Other Red - I'm gonna PM you right now...

~Keri
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"Thanks for this!" says:
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Old 06-17-2008, 11:13 PM #10
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Quote:
Originally Posted by RedPenguins View Post
I am heading back to baltimore on June 29th. I will enter the hospital on July 3rd and begin treatment.

To the Other Red - I'm gonna PM you right now...

~Keri
Hey Keri

Keep us posted on your progress! This is a very interesting procedure.
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