LUV2DANCE2
01-08-2008, 07:13 PM
I've had MS since 1990 and it has slowly gotten worse. I was first on Avonex, then moved to Rebif. After having some minor thyroid issues (and still getting worse...slowly) I took myself off Rebif. Also because it was never tested on Secondary Progressive MS, only Relapsing Remitting MS. What are people who have Secondary Progressive MS using successfully?
Thanks,
T
Thanks,
T
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duttin
01-08-2008, 08:40 PM
Luv2dance,
I Have Spms,i'm Staying On My Rebif Even Though It's Not Approved For Spms.as Far As I Know At The Present Time There Aren't Any Disease Modifying Meds For Spms.
I Know Other Have Tried Tysabri.
I Wish They Would Come Up With Something.
T
I Have Spms,i'm Staying On My Rebif Even Though It's Not Approved For Spms.as Far As I Know At The Present Time There Aren't Any Disease Modifying Meds For Spms.
I Know Other Have Tried Tysabri.
I Wish They Would Come Up With Something.
T
MSNik
01-08-2008, 08:52 PM
HI Luv2Dance.
Are you positive you have SPMS?? And how long were you on Rebif and Avonex for? The reason I ask is that my first 5 months on Rebif, I had 2 major relapses and could have SWORN that it wasnt working. I was positive my MS was progressing and that the docs were going to find numerous NEW lesions on my 6 month MRI.
Turned out, nothing new showed and once I hit the 6 month mark on Rebif, I stopped feeling like I was progressing and started feeling more like myself. Now, after 14 months on Rebif, I feel 95% okay most of the time..my only symtoms are the original ones which led me to my dx and never actually went away (mainly tingling, burning parastastia in my left hand and fingers).
Its not likely that they will put you on any drugs if they have dx you with SPMS.....however, it is still very possible that you just arent cut out for interferons, which Avonex and Rebif are and might be a candidate for Tysabri..
Why did you wean yourself off Rebif? Its not a drug you wean off of...it IS definately a drug which should be monitored at least every 6 months...what does your Neuro say about this?
Are you positive you have SPMS?? And how long were you on Rebif and Avonex for? The reason I ask is that my first 5 months on Rebif, I had 2 major relapses and could have SWORN that it wasnt working. I was positive my MS was progressing and that the docs were going to find numerous NEW lesions on my 6 month MRI.
Turned out, nothing new showed and once I hit the 6 month mark on Rebif, I stopped feeling like I was progressing and started feeling more like myself. Now, after 14 months on Rebif, I feel 95% okay most of the time..my only symtoms are the original ones which led me to my dx and never actually went away (mainly tingling, burning parastastia in my left hand and fingers).
Its not likely that they will put you on any drugs if they have dx you with SPMS.....however, it is still very possible that you just arent cut out for interferons, which Avonex and Rebif are and might be a candidate for Tysabri..
Why did you wean yourself off Rebif? Its not a drug you wean off of...it IS definately a drug which should be monitored at least every 6 months...what does your Neuro say about this?
Snoopy61
01-08-2008, 09:04 PM
Hi T
I believe Betaseron has been approved for SPMS and you also have the option of the chemo drugs. I don't know if Tysabri is helping those with SP but I know some are using it.
I believe Betaseron has been approved for SPMS and you also have the option of the chemo drugs. I don't know if Tysabri is helping those with SP but I know some are using it.