Warning! This is my first time posting in a forum, so I apologize for the length.
I was diagnosed almost 10 years ago, when I was 20, after a year of ruling everthing else out because my lesions were not in the typical area for an MS diagnosis. Since that diagnosis, I have seen about 5 different neurologists (partially due to moving across the state). The neurologist who diagnosed me, diagnosed me (incorrectly) with PPMS and put me on Methotrexate. When I changed neurologists, I was changed to a diagnosis of RRMS, which made more sense, and was put on Betaseron. I was on that for about 10 months and did have one major flare up, but had to stop Betaseron because it gave me flu-like symptoms. Since then, I've been on IVIG, Copaxone, Copaxone with monthly steroids, and Tysabri. Stopped Tysabri because I was still having major flare ups and they believe I developed an antibody to it. I haven't been on a treatment since August, but am on my 2nd 3 day IV Solumedrol treatment in 3 months.
I saw an amazing neurologist affiliated with Brigham Hospital (referred to me by my local neurologist because she doesn't know where to go next with my treatment). The neuro in Boston wants me to start Cytoxan treatments. I'm aware of all the potential risks and side effects, but am leaning that the side effects will be worth if it can keep me active longer. I'm 30 and am a full time middle school teacher. I don't want to go into things too quickly, but also don't want to sit around and wait to see if more or worse symptoms develop.
I guess I'm just hoping to get some feedback from others who been on the treatment...side effects, tests needed in advance, dosage given, etc. I see my local neuro in 2 weeks, but she doesn't always present things clearly.
Sorry was so long, but I appreciate any insight that can be provided.
Thank you!
I was diagnosed almost 10 years ago, when I was 20, after a year of ruling everthing else out because my lesions were not in the typical area for an MS diagnosis. Since that diagnosis, I have seen about 5 different neurologists (partially due to moving across the state). The neurologist who diagnosed me, diagnosed me (incorrectly) with PPMS and put me on Methotrexate. When I changed neurologists, I was changed to a diagnosis of RRMS, which made more sense, and was put on Betaseron. I was on that for about 10 months and did have one major flare up, but had to stop Betaseron because it gave me flu-like symptoms. Since then, I've been on IVIG, Copaxone, Copaxone with monthly steroids, and Tysabri. Stopped Tysabri because I was still having major flare ups and they believe I developed an antibody to it. I haven't been on a treatment since August, but am on my 2nd 3 day IV Solumedrol treatment in 3 months.
I saw an amazing neurologist affiliated with Brigham Hospital (referred to me by my local neurologist because she doesn't know where to go next with my treatment). The neuro in Boston wants me to start Cytoxan treatments. I'm aware of all the potential risks and side effects, but am leaning that the side effects will be worth if it can keep me active longer. I'm 30 and am a full time middle school teacher. I don't want to go into things too quickly, but also don't want to sit around and wait to see if more or worse symptoms develop.
I guess I'm just hoping to get some feedback from others who been on the treatment...side effects, tests needed in advance, dosage given, etc. I see my local neuro in 2 weeks, but she doesn't always present things clearly.
Sorry was so long, but I appreciate any insight that can be provided.
Thank you!
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