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Heres something interesting for you
Posted: Sat Apr 25, 2009 7:44 am
by chrishasms
I just got an email via someone through my site who is going to JH for HiCy. They told me they talked with Carrie and in Sept they are going to start trying something different.
1. HiCy and then Tysabri
2. HiCy and then Copaxone
3. 3 different dose amounts based on a blood test they have developed.
I am trying to find out what the blood test is because that has me fascinated!
So I am guessing there are new ways being looked at, 20 people being re-dosed isn't crazy.
Posted: Sat Apr 25, 2009 7:55 am
by scorpion
That is very interesting Chris. I will be interested to see what blood test they developed as well. Please post when you get more info!!! Also what did you mean by 20 people re-dosing is not crazy?
Posted: Sat Apr 25, 2009 8:01 am
by chrishasms
Well Jamie had posted 20 people needed to be re-dosed. I had talked to Dr. Brodsky and he had said 1 person. However, if they are going to start doing this with the big T as well, it means they are not getting the results with Copaxone they wanted (or expected?). So I in turn take that as it must be 20 people if they are trying to improve reactivation results.
I'm just ecstatic they are still trying to get better results rather than doing the normal MS doctor stuff of putting you on a drug with a 30% chance of anything and forgetting about it.
Posted: Sat Apr 25, 2009 9:13 am
by RedPenguins
Interesting with the Tysabri. I'd imagine one would have to wait 6 months post HiCy before touching Ty - as you can not use ty if you are immuno-compromised. I tried Ty before HiCy (just two times).... The risks involved would increase post HiCy - and for me, I don't think I'd touch Ty after having done HiCy.
Just my two cents.
~Keri
Posted: Sat Apr 25, 2009 9:19 am
by RedPenguins
I just tried to go back and find Jamie's post that mentioned 20 people re-dosing. I couldn't find it - but I wonder if it was a typo. I don't recall Dr. Kerr or Dr. Hammond mentioning 20 people re-dosing! I thought the number would be 2 when I did it again. I will have to ask again, because if 20 people have re-dosed, then they'd have some more data on it - and it didn't seem to me that they had any data available about redosing!
What about HiCy then Copax with VitD? I'm going to try that route this time, providing that Dr. Kerr is in agreement.
I don't know what my current VitD level is....but it was a 6 back at the end of February. I don't imagine that the few doses they've given me have brought me into the normal range by far.
Oh, a lil update - I have almost all of my tests complete. This time they had me do a CT of my chest and sinuses! Weird. I have to go for EKG and echo on Wednesday, then I should be done.
I'm scheduled for my Hickman line and admission on the 7th. I leave home on the 4th. 
~Keri
Posted: Sat Apr 25, 2009 10:07 am
by Jamie
Chris, I do not remember posting that 20 people need redosing.
I am only aware of Keri.
Posted: Sat Apr 25, 2009 10:08 am
by Jamie
oh I see - I actually said that she would only be about the 2nd person from 20+ people (who were dosed at that time) to need redosing.
It wasn't very clear from my post though!
Posted: Sat Apr 25, 2009 12:13 pm
by chrishasms
Oh OK I see it too. I misunderstood. I'm sorry. lol
Posted: Sat Apr 25, 2009 12:41 pm
by scorpion
I just want to thank Chris for keeping up on the latest info! It is so frustrating when you get positive data on a specific treatment and than you hear nothing about it for another 3 years!!!
Posted: Sat Apr 25, 2009 1:39 pm
by Lyon
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Posted: Sat Apr 25, 2009 3:49 pm
by chrishasms
See thats just it. They don't do things just for the hell of it so if that guy says Carrie said it, I see no reason to think its not true. If they are doing it they have a good reason, I'm just not on their medical board so I would not know why.
I know they want a 100% effective treatment. Maybe with Ty they think they would achieve it? All speculation at this point.
Posted: Mon Apr 27, 2009 11:33 am
by chrishasms
OK the reason for the blood test is to test you for the enzyme that protects the bone marrow. It seems they have learned some people have more of it then others so it may take more of the drug to actually kill off the immune system because some people are better protected then others. It won't harm you anymore or less it will just be damn sure to kill off the immune system.
The Ty trial is to try to get 100% post treatment effectiveness so people like me don't ever pop off even 1 little lesion. They are still very happy with the results they just want them even better then they are now.
Posted: Mon Apr 27, 2009 12:20 pm
by Lyon
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Posted: Mon Apr 27, 2009 12:25 pm
by chrishasms
I screwed up again. I believe what she means is they are going to do a trial comparing TY to HiCy+ Copaxone but they are only figuring out the details right now. It would be a II/III test from my understanding.
Posted: Mon Apr 27, 2009 12:32 pm
by Lyon
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