This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.
It is currently Wed May 22, 2013 8:27 pm


All times are UTC - 8 hours [ DST ]




Post new topic Reply to topic  [ 24 posts ]  Go to page Previous  1, 2
Author Message
 Post subject:
PostPosted: Fri Mar 06, 2009 11:30 am 
Offline
Family Member

Joined: Thu Apr 17, 2008 3:00 pm
Posts: 92
Petakitty,

Have you already done HiCy or are you also here researching? Just curious...


Top
 Profile  
 
 Post subject:
PostPosted: Fri Mar 06, 2009 11:55 am 
Offline
Family Elder

Joined: Wed Feb 11, 2009 4:00 pm
Posts: 1419
Location: California
I'm with you you Peta, those are the only 2 treatments I would seriously consider (after I try the abx along with copaxone route for a year).

They all talk about Revimmune and stem cell therapies not being that successful in secondary MS. I am confused to whether that is because too much damage is done by the time someone is secondary or if it is because people with secondary seem to progress continously (or a mixture of both) I hope I stay RR long enough to be able to try them.

The other prob with Revimmune and stemcell therapy (with chemo) for a young woman is you have to have your children before starting these treatments as I think they cause infertility.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Mar 06, 2009 1:20 pm 
Offline
Family Member
User avatar

Joined: Tue Oct 30, 2007 4:00 pm
Posts: 63
The problem with SPMS and PPMS is the disablity increases are not just from disease activity but from the axons in the neurological system failing from other chemical reactions related to demylenation. The best results with revimmune occurr when you are just fighting inflamation. The sooner you get on this protocol the better the long term results. With that said this treatment is too new to see if over the long term SPMS will be less of an issue do to natural remylenation over time. Eventhough in SPMS there is less inflamation and new activity there could be MS activity that is really not measurable going on. Revimmune may be able to eliminate this and thus slow any additional secondary progression outside of visable active disease.

Just a theory for what its worth. What are your thoughts Lyon?

HiCy


Top
 Profile  
 
 Post subject:
PostPosted: Fri Mar 06, 2009 1:56 pm 
Offline
Family Elder

Joined: Wed May 03, 2006 3:00 pm
Posts: 6063
.


Last edited by Lyon on Sat Nov 26, 2011 3:03 pm, edited 2 times in total.

Top
 Profile  
 
 Post subject:
PostPosted: Fri Mar 06, 2009 1:57 pm 
Offline
Family Elder

Joined: Thu Sep 14, 2006 3:00 pm
Posts: 1161
Infertility isn't an issue. Less than 5% of the folk who have HiCy or just good ol cyclophosphamide have fertility issues and there is no worry for defects. If you are older you may have more issues but it may be just the natural order of things related to fertility and age.


Straight from Doc Brodsky.


Top
 Profile  
 
 Post subject:
PostPosted: Fri Mar 06, 2009 2:22 pm 
Offline
Family Elder

Joined: Wed Feb 11, 2009 4:00 pm
Posts: 1419
Location: California
Thanks Chris:) I really want to find a treatment to believe in and I was hoping revimmune was that treatment.

I went to the patients like me website to look at those who had been treated with cytoxin,but I struggled to find a patient that was doing well as a result of cytoxin. (about 90% of them treated had PPMS and SPMS so maybe that is why) if you get a chance have a look. I hope that they were on a different protocol to revimmune.


Top
 Profile  
 
 Post subject:
PostPosted: Sun Mar 08, 2009 5:00 pm 
Offline
Family Elder
User avatar

Joined: Wed Sep 10, 2008 3:00 pm
Posts: 1068
LR,

I haven't checked that website, but keep in mind that Cytoxan is sometimes used (and has been since the 1980's), when other treatments fail. The difference in the JHU approach is that they are using very high doses over a short period of time in order to deplete the immune system.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 24 posts ]  Go to page Previous  1, 2

All times are UTC - 8 hours [ DST ]


Related topics
 Topics   Author   Replies   Views   Last post 
There are no new unread posts for this topic. Waiting for an appointment...

[ Go to pageGo to page: 1, 2, 3, 4 ]

RedPenguins

56

7039

Wed Dec 31, 1969 5:00 pm

Guest View the latest post

There are no new unread posts for this topic. Finally the cat is out of the bag

chrishasms

0

1462

Fri Mar 13, 2009 9:15 am

chrishasms View the latest post

 


Who is online

Users browsing this forum: No registered users


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum

Search for:
Jump to: