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.
Treatment after long term RRMS
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CureOrBust
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CureOrBust
- Family Elder
- Posts: 3374
- Joined: Wed Jul 27, 2005 2:00 pm
- Location: Sydney, Australia
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
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.
Re: campath
Dear CUREORBUST MY NANE IS SEEVA FROM SYDNEY,AUSTRALIACureOrBust 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.
please let me know how i can get CAMPATH off- lablel in SYDNEY. SHOULD I NEED ANY PRISCRIBE from my DR.
THANKS SEEVA :roll:
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CureOrBust
- Family Elder
- Posts: 3374
- Joined: Wed Jul 27, 2005 2:00 pm
- Location: Sydney, Australia
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?
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?
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.
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.