rebooting at JHH

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

Postby 777 » Sat May 10, 2008 4:02 pm

Thats cool they are going to start doing that in Denver, I might wait. I am from Denver but living in Dallas right now. Probably moving back soon though.

I am torn because I am afraid if I wait too long I will slip into SPMS and I want the best chance possible to keep living a "normal" life. Lots of thinking to do.
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Postby Jamie » Sun May 11, 2008 9:05 am

Everyone's situation is different triple7.

If you are in control and no deficits then it's a harder decision to make.

For the people who do decide to do this I bet it's really not that hard a decision at all.

If you are sliding downhill and agonising about this then, well....... *i've been stuck about what to write here but it all sounds either patronising or aggressive so I'll quit while I'm behind*...

but DON'T let people tell you there is a 3-7% risk of death.

I'll be challenging everyone online who says that. I have the data, they have rumours and hearsay.

p.s.

blog is updated now with a special snazzy index page!
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Postby mrhodes40 » Sun May 11, 2008 11:23 am

Chris, I am confused.

This is a stage III trial in which they are looking fo prove efficacy in MS with this protocol and they are doing it at JH.

But in another thread I also read that some insurance comanies are covering it which suggests post trial availability and JH is treating some people outside of the trial? While the trial is going on also?

Now you mention also "Denver", is this another trial center or a hospital which will offer the protocol? Do you know which hospital so a person can call?

ANd finally are you aware of it being offered to other institutions, for example, if I went to the University of Washington MS clinic, which has done studies on autologous stem cell transplants (I understand it is different but I offer them as contenders since they are familiar with the delicate lymphopenic phase) and asked them to consider adding this treatment, is it available for them to use the protocol? Would JH give them the information they need to apply it or would they need to be invited to participate in the study itself??

Thanks! It sounds very interesting to me.
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Postby HiCy » Mon May 12, 2008 11:02 am

40,

JH and Dr. Brodsky have the history, know how and rights to this proceedure. ABPI has liscensed this from JH and called it Revimmune. JH and ABPI are trying to bring this to the mainstream by doing a
phase III study to show statistically the benefits from the proceedure. They are still getting insurance companies to pay for this by showing them the current statistics of past patients and the cost benefit to them to give this a shot. For me it was not a hard sell to BC/BS. I was on Tysabri to the tune of $48K per year along with other meds. The HiCy treatment in the end for the proceedure itself with all the follow up MRIs will probably be around $40K. They will get their investment back in less than a year and if it works then they are seriously in the black going forward. They at least make their investment back in less than a year. It is a good trade off for them.

JH will be setting up different centers around the country to perform the proceedure and I would be willing to bet that these areas will be the centers of treatment in the future if the FDA gives it the ok. If they don't they will most likely keep performing the treatment in Baltimore. You have to remember they are doing this for other autoimmune diseases other than MS and they have had great success. I don't see any other Hospitals just giving this a shot. It might seem very straight forward at JH but they have a lot of History that was developed over a few years.



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Postby Lyon » Mon May 12, 2008 2:01 pm

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Postby mrhodes40 » Mon May 12, 2008 7:43 pm

Thanks for the info Hicy!

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Postby HiCy » Tue May 13, 2008 12:40 pm

Bob,

I would pose this question to Dr. Brodsky. I really don't see why not. They might think positively about the idea. They have a lot of faith in this process. If you read the Revimmune press releases they are looking to address all the autoimmune diseases with this protocol.

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Postby Lyon » Tue May 13, 2008 1:11 pm

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Postby HiCy » Tue May 13, 2008 6:58 pm

Bob,

Has you brother tried Tysabri? What meds is he on?

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Postby Lyon » Tue May 13, 2008 7:16 pm

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Waiting/Wash-out period

Postby RedPenguins » Tue May 13, 2008 10:28 pm


Hi Bob,

I'm currently on Tysabri and waiting to have the HiCy - and I've been told the wash out period is only 4 weeks. Okay, so "only" is relative...I don't know how often your brother currently has treatment...but 4 weeks in possible agony/desperation is "piss in the bucket" when you think about the long-term benefits that HiCy might have for him??

Okay - so I have NEVER used the term "piss in a bucket" and have NO idea where that came from! Must be from one of the holes in my brain!

~Keri :)
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Re: Waiting/Wash-out period

Postby Lyon » Wed May 14, 2008 12:37 pm

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Postby Cyclops » Wed May 14, 2008 12:56 pm

Us Brits would use "piece of piss" to describe something trivial or easy. Though I kinda like the term "piss in a bucket" especially since I've recently discovered that I piss myself every time I sneeze.

I guess going for Revimmune is a big decision especially when its still in trials.

Oh, and hello to everyone - I just joined last night. I'm Cyclops.

.-)
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Postby Lyon » Wed May 14, 2008 1:40 pm

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Postby 777 » Wed May 14, 2008 1:48 pm

Lyon wrote:
Cyclops wrote:Oh, and hello to everyone - I just joined last night. I'm Cyclops.
Hi Cyclops, welcome to the site!

Cyclops wrote:I guess going for Revimmune is a big decision especially when its still in trials.
That's a pretty accurate statement. Regardless of how easy or hard someone finds the decision, it's a big decision.

One of the worst things about an MS diagnosis is that it separates you from the comfort of the huddled masses who usually don't have to face life altering decisions and are able to just accept the default, which is to grow old gracefully and eventually succumb to the normal infirmities of old age as been happening for millions of years. People with MS have to decide on a treatment option or decide not to treat, with it in mind that they are have to spend the rest of their lives living with the results and maybe kicking themselves in the ass, despite there not being any clear cut "right" answers.

Bob


Well said
Another thing for people to keep in mind before deciding to this is that we wil not be eligable for any other treatments or trials within the next 5 years. hopefullt with the treatment we wouldnt, but if we are seeing the results we want 3 years from now, we stil have to wait another 2 years before we are eligable for anything else.
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