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Multiple Sclerosis (MS) (Expert Forum)
SPMS
Answered by
Dr. Daniel Kantor, MD - Multiple Sclerosis (MS), Migraine (Headache), Transitional (Teen) Neurology
Neurologique
Ponte Vedra Beach - FL
Welcome to the Multiple Sclerosis (MS) forum.
SPMS
by shni, Mar 31, 2009 10:26AM
I am 45. I've had RRMS for 20 yrs. Ihave had SPMS for 5 yrs(?). I am EDSS 8 or more. I'm on LDN, baclofen, (alertec) midafinil, 4 aminopyridine. I'm off betaseron now for about a year because I can't get funding because apparently I've progressed too far. Comments? Neuro and MSclinic just say "too bad..***** to be you". I see a feeding tube in my near future. My kids are 7 & 9. Any treatments to try and slow this thing down? I'd like a bit more time.
Doctor's Answer
by Dr. Daniel Kantor, MD, Apr 07, 2009 05:48PM
, Apr 07, 2009 05:48PM
EDSS of 8.0 is quite advanced, as I am sure you are aware.
You are being very proactive by being on both LDN and compounded 4-Aminopyridine.
Unfortunately, none of our currently FDA approved medications have demonstrated that they work in such advanced MS. Did the Betaseron help you recently (there is a $50 maximum copay program)? Rituximab may be an option for you (off-label) and you can speak to your neurologist about it. Some people would suggest trying Copaxone because of the limited data from their Primary Progressive MS (PPMS) trial.
Fingolimod (FTY720) is entering trials for PPMS and you may want to see if you qualify.
You are being very proactive by being on both LDN and compounded 4-Aminopyridine.
Unfortunately, none of our currently FDA approved medications have demonstrated that they work in such advanced MS. Did the Betaseron help you recently (there is a $50 maximum copay program)? Rituximab may be an option for you (off-label) and you can speak to your neurologist about it. Some people would suggest trying Copaxone because of the limited data from their Primary Progressive MS (PPMS) trial.
Fingolimod (FTY720) is entering trials for PPMS and you may want to see if you qualify.
While you are waiting for an answer you might also wish to post over on the MS Forum, there are many knowledgeable people on there who might be able to offer some insight. It is also a good place to be to get advice, information and everone is very friendly.
Mand