Hello all. This is my first post here but I'm hoping to have finally found a 'home.' I was diagnosed with RRMS in 2009 (I think - it's been so long now) after years of symptoms, specialists and being told my issues were all in my head. I've been on pretty much every medicine out there and each had its own pros and cons with me:
Rebif - holy flu like symptoms and night sweats. Relapsed twice while on it and both were severe enough that hospitilizations were required.
Copaxone - same side effects as above plus some nice little injection site necrosis for good measure. Still relapsed too.
Aubagio - so excited about an oral medication. Hair started falling out and I began sweating like a pig even in cold weather. Relapsed three times in 9 months.
Tysabri - this is the most wonderful and amazing medicine ever created for ms. I got my life back. It was amazing. I was sitting in the infusion room getting my fourth infusion and sugar turned to ***. Long chain of events made short - I went into anaphylaxis. So the one medicine that ever worked was now off limits.
Tecfidera - what a joke. I could have been taking aspirin for all the good it did. It didn't relieve any symptoms and certainly didn't slow anything down. Since January 2014 when the Tysabri problem happened I've had four massive relapses. 3 happened on tecfidera.
Now I'm in a holding pattern. I'm on plegridy until the lemtrada is available in my area. The hospital or Dr or both have to become certified and compliant with the administration protocols and procedures. So I am just impatiently waiting until lemtrada can come hopefully save the day for me. Kinda out of options otherwise lol.
Jessica
Rebif - holy flu like symptoms and night sweats. Relapsed twice while on it and both were severe enough that hospitilizations were required.
Copaxone - same side effects as above plus some nice little injection site necrosis for good measure. Still relapsed too.
Aubagio - so excited about an oral medication. Hair started falling out and I began sweating like a pig even in cold weather. Relapsed three times in 9 months.
Tysabri - this is the most wonderful and amazing medicine ever created for ms. I got my life back. It was amazing. I was sitting in the infusion room getting my fourth infusion and sugar turned to ***. Long chain of events made short - I went into anaphylaxis. So the one medicine that ever worked was now off limits.
Tecfidera - what a joke. I could have been taking aspirin for all the good it did. It didn't relieve any symptoms and certainly didn't slow anything down. Since January 2014 when the Tysabri problem happened I've had four massive relapses. 3 happened on tecfidera.
Now I'm in a holding pattern. I'm on plegridy until the lemtrada is available in my area. The hospital or Dr or both have to become certified and compliant with the administration protocols and procedures. So I am just impatiently waiting until lemtrada can come hopefully save the day for me. Kinda out of options otherwise lol.
Jessica
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