Treatment after long term RRMS

A board to discuss the soon-to-be released drug Campath as a treatment for Multiple Sclerosis

Treatment after long term RRMS

Postby CureOrBust » Tue Nov 04, 2008 5:39 pm

I am trying to get Campath off-label. The thing that worries me, even though I am still RRMS, I have had symptoms for over 13 years, with a diagnosis about 3 years ago.

Most of the people I have seen here who have received it, have been usually considerably less time with this disease, but more aggresive. I have read the studies that show its more effective with people in early RRMS, and I don't think I explicitly fall into that group. So, I am wondering, whom out-there, has had Campath while still RRMS, but has been symptomatic for a long time? ie >5 years.

I am EDSS of about 3.5 (after 13 years), and I am definitely currently SLOWLY recovering symptomatically, so I think I have the potential to respond like someone who is early RRMS.
User avatar
CureOrBust
Family Elder
 
Posts: 2904
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Advertisement

Postby Lyon » Tue Nov 04, 2008 8:04 pm

.
Last edited by Lyon on Sun Nov 27, 2011 12:08 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby CureOrBust » Tue Nov 04, 2008 8:35 pm

Your right! I thought Raven was actually less years between diagnosis and treatment with Campath. Thanks bob.
User avatar
CureOrBust
Family Elder
 
Posts: 2904
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby raven » Sat Nov 15, 2008 3:48 pm

Hi,

Sorry I dont check ThisIsMS as often as I used to. As was pointed out earlier it was about 5 years between diagnosis and treatment. Although diagnosis seems to me to be a rather artificial date to begin with. For example it took me 18 months to go from from first approaching my GP with my concerns to actually geting a diagnosis. For some I know it has taken a lot longer.

The only thing you can reasonably do is discuss your case with the trial organisers and let them make a decision as to whether they believe the treatment can help.

Robin
Do not go gentle into that good night. Rage, rage against the dying of the light.
User avatar
raven
Family Elder
 
Posts: 240
Joined: Sat Sep 25, 2004 3:00 pm
Location: Bristol, England

Postby Grumpster » Sun Nov 16, 2008 8:38 pm

I am in discussions right now with a trial site in S. california. It looks likely that I will start in a few weeks. I hope that others who are trying to get on board are able to. I am nervous of complications, but I am 99.99% sure I will go through with the trial. Best of luck everyone.
User avatar
Grumpster
Family Elder
 
Posts: 169
Joined: Tue Aug 01, 2006 3:00 pm
Location: S. California

Re: campath

Postby seeva » Wed Jan 21, 2009 1:55 am

CureOrBust wrote:I am trying to get Campath off-label. The thing that worries me, even though I am still RRMS, I have had symptoms for over 13 years, with a diagnosis about 3 years ago.

Most of the people I have seen here who have received it, have been usually considerably less time with this disease, but more aggresive. I have read the studies that show its more effective with people in early RRMS, and I don't think I explicitly fall into that group. So, I am wondering, whom out-there, has had Campath while still RRMS, but has been symptomatic for a long time? ie >5 years.

I am EDSS of about 3.5 (after 13 years), and I am definitely currently SLOWLY recovering symptomatically, so I think I have the potential to respond like someone who is early RRMS.

Dear CUREORBUST MY NANE IS SEEVA FROM SYDNEY,AUSTRALIA
please let me know how i can get CAMPATH off- lablel in SYDNEY. SHOULD I NEED ANY PRISCRIBE from my DR.
THANKS SEEVA :roll:
User avatar
seeva
Family Elder
 
Posts: 221
Joined: Sun Jan 20, 2008 4:00 pm
Location: SYDNEY

Postby CureOrBust » Wed Jan 21, 2009 4:46 am

Still looking. :(

Rejected for the Phase III. My neurologist spoke with Genzyme about getting it off label when he spoke to them about running his part of the trials. They said they could not supply him with it for MS.

I am guessing (hoping) that if I were to find someone who is prepared to prescribe it (as is done for cancer), then an oncology lab could simply follow the prescription, regardless what its for and why I am receiving it.

From what i have read, someone in the USA who post's here received it this way.

Have you spoke with your neurologist on this topic?
User avatar
CureOrBust
Family Elder
 
Posts: 2904
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby freiguy » Wed Jan 21, 2009 7:26 am

Cure,
I think it was Alli that got it this way. I am six months into the CAMMS323 trial right now but I know a patient at my doctor's practice that has received it off label.

Fred
User avatar
freiguy
Family Member
 
Posts: 69
Joined: Sat May 17, 2008 3:00 pm

Postby queenie » Sat Jun 13, 2009 7:16 pm

i WAS DIAGNOSED IN 2005. hOWEVER, I TRULY BELIEVED i HAVE HAD SYMPTOMS SINCE AT LEAST 1988, WHEN DD was born. If not then, then 2090, when I had a 5 month span of feeling very poorly, with headache ALL the time, eye pain (probable optic neuritis) and extreme fatigue.
However, i was bnot diagnosed until 2005. Even though I was very honest about when my symptoms started, they went by my dx date, and took me on to the campath stage 3 study.
User avatar
queenie
Family Member
 
Posts: 55
Joined: Tue Jun 02, 2009 3:00 pm


Return to Campath (Lemtrada, Alemtuzumab)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service