Reactivation ?

sandonpoint · Post by **sandonpoint** » Thu Sep 11, 2008 12:44 am

Hi , just wondering if any pf the patients that have had this treatment AND copaxone relapsed ?

This is the data I REALLY want see

It's going to be quite interesting to see what happens, because copax was rock solid in preventing an MS "like" disease in mice.

Intersesting times abound

Sandon

pvns2005 · Post by **pvns2005** » Thu Sep 11, 2008 5:09 am

I have been taking copaxone for only 2 months post HiCy. I think it's to early for anyone to give you the data your asking for.

Chris S.

chrishasms · Post by **chrishasms** » Thu Sep 11, 2008 5:21 am

The other night I was privileged enough to have been at a dinner party with Dr. John Reichert and he gave a speech actually explaining some of those questions...if I may...straight from the horses mouth.

Copaxone does works as a preventative in both Mice and Monkeys. The big issue is EAE, from my understanding, is close but does not involve inflammation. So with HiCy it knocks out the inflammation as well as MAYBE the underlying issue. We don't know.

We have folks who are close to 2 years out on Copaxone w/o a relapse but it's too early to tell. Just from an EDSS standpoint I like HiCy lol. `I think we bode well because folks using Copaxone early on in the disease...AKA right after the first symptoms present, don't get bad. It's almost like they catch the immune system early enough.

Jamie · Post by **Jamie** » Thu Sep 11, 2008 5:29 am

I was told at Hopkins that longest people on the copaxone are 11 months out ish, none have reactivated.

agreed, it'll take many years of quiescence for anyone to believe its gone for ever.

doesn't stop me hoping though!

chrishasms · Post by **chrishasms** » Thu Sep 11, 2008 8:35 am

So it's 11 months? It must be Brett I bet lol.

I was under the impression a couple of the first rounders that had to be retreated were put on Copaxone and they were further out. I'm probably wrong lol.

Today is tough and so was yesterday but I'll be getting an MRI next week sometime. I have those days like Mel had as well. Sometimes many of them but they always seems to rectify itself and I am always a little better than I was before.

Scares the piss outta me lol...would still do it again tomorrow if I had too.

Jamie · Post by **Jamie** » Thu Sep 11, 2008 1:36 pm

there'll be curves and bumps but the overall trend will be up mate.

chrishasms · Post by **chrishasms** » Thu Sep 11, 2008 1:42 pm

I hope so.

Even on my worst day it is never as bad as it used to be. My L'hermittes and Hoffmans is still gone. No fatigue anymore ever. Perfect bladder function.

Ummmm, what was I bitching about again?

sandonpoint · Post by **sandonpoint** » Fri Sep 12, 2008 2:52 am

I'm very happy for you Chris, you are very kind to share your experiences with all of us.

Just wondering how long the phase III will take ? Any ideas ?

Sandon

Jamie · Post by **Jamie** » Fri Sep 12, 2008 4:07 am

Mel had 4-5 beats of clonus in both legs, none at all at follow up.

chrishasms · Post by **chrishasms** » Fri Sep 12, 2008 7:56 am

Well I have clonus like a MoFo lol.

Get this, last couple of days the whole right side of my body, and my trunk, feels like when I was very first diag'd. All weird like. Drives me nuts...so I worry a little right?...

Well then I get up and walk across the room better than I have in 2 years and put my pants on almost normally, again for the first time in 2 years.

I have these days where things bug me like they used to, but then everything comes back to normal and I am better than I ever was before.

I am almost starting to look at these little "setbacks" as a good thing because it means I am about to recover something permanently again.

Does Mel or anyone have these moments to?

Jamie · Post by **Jamie** » Fri Sep 12, 2008 8:16 am

Yes she does.

She had that pseudo-flare when she got over heated, then the lingering double vision got a lot better.

Also - she had pars planitis and since hicy it's stopped and even reversed, her prescription is now 3x too strong for her left eye.

HiCy · Post by **HiCy** » Fri Sep 12, 2008 8:35 am

I was told I was the second person to go on Copaxone after HiCy.

chrishasms · Post by **chrishasms** » Fri Sep 12, 2008 8:59 am

Thanks Brett.

I have forgotten to mention my eyesight improvements. I used to wear glasses before the HiCy. Now my vision is 20/10- better than perfect. That means my vision issues started in 1996.

Wowser eh?

Davis · Post by **Davis** » Fri Sep 12, 2008 9:02 am

chrishasms wrote:Well I have clonus like a MoFo lol.

Get this, last couple of days the whole right side of my body, and my trunk, feels like when I was very first diag'd. All weird like. Drives me nuts...so I worry a little right?...

Well then I get up and walk across the room better than I have in 2 years and put my pants on almost normally, again for the first time in 2 years.

I have these days where things bug me like they used to, but then everything comes back to normal and I am better than I ever was before.

I am almost starting to look at these little "setbacks" as a good thing because it means I am about to recover something permanently again.

Does Mel or anyone have these moments to?

I have those moments too. Then my systems get better and my body is not as unbalanced as previously. It scares me but I am looking at it more positively. The body may be healing itself and fighting to get back to what is normal. I talked to Dr. Kerr about this and he called them episodic events and not to be negatively concerned.

chrishasms · Post by **chrishasms** » Fri Sep 12, 2008 9:18 am

Ya, they can call them what they want but for the first 6 months I still wasn't too impressed sometimes lol.

On Monday I have an MRI and on Tues I have an appt with Dr. John Corboy. I can't wait to see what he says. I'll do my tests with him. I will send a copy to all of the folks at JH and they will work together because he knows them all.

I hope to be able to make my January appt, but if not it will be the March one for sure. I want to go see the cherry blossoms in DC.