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Old 05-28-2010, 10:09 AM
KarenR*'s Avatar
KarenR* KarenR* is offline
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Join Date: Jan 2008
Location: Beautiful Western North Carolina
Posts: 35
15 yr Member
KarenR* KarenR* is offline
Junior Member
KarenR*'s Avatar
 
Join Date: Jan 2008
Location: Beautiful Western North Carolina
Posts: 35
15 yr Member
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I started on Rebif shortly after dx in 2005. We added Imuran to the mix. Then pulse (monthly) IVSM.

Over 16 months I had about 5 or 6 exacerbations, and as many 3- or 5-day IVSM treatments.

My MRI was lit up like a Christmas tree and I was very symptomatic. Testing showed I had developed neutralizing antibodies to Rebif. Might as well have been shooting tap water.

I stopped Imuran in Oct. 2006 and Rebif in November 2006.

I started Tysabri in February 2007. Hardest and best decision I ever made. For 30 months I sometimes felt as if I didn't even have MS anymore. The only symptom that lingered was a numb big toe! My MRI's were spectacular. Many of my lesions shrunk or disappeared. None were enhancing. I felt great.

After 36 infusions my doctor and I decided to take a 'holiday' from Tysabri, mostly because the manufacturer was no longer forthcoming in publishing 'adverse effects' (instances of PML and outcomes from treatment). We felt that we could no longer make informed decisions about continuing Ty.

I stopped Ty in October 2009. Things were okay for about 6 weeks, then I slowly started sliding downhill. I haven't had a flare, but a lot of my symptoms came creeping back (numbness to the knee and in the hands, cog fog, fatigue, etc.)

I started Copaxone in December 2009, just to be on something. I had an MRI about 2 weeks ago that showed 7 new lesions, some enhancing. Which explains why I'm feeling like doodoo.

I am going back on Ty as soon as the paperwork can be re-filed. My neuro promises to watch me like a hawk, and I trust him.

I have too many good things going on in my life right now to miss out on them because of how I am feeling. I look forward to feeling better soon. (fingers crossed)

That's my story and I'm sticking to it!
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Karen
dx 6/05 ~ Rebif 7/05 ~ Tysabri 2/07 ~ Copaxone 12/09 ~Tysabri 7/10 ~ IVIG 5/11 ~ Gilenya 1/14
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