Monday, 6 October 2014

Happily backtracking

Phew.  I am happy that appointment is over.

I was kind of scared to tell my Neurologist that I wanted to go back on Copaxone.  I know he wants me on something stronger in order to keep that spinal cord lesion at bay and to really work aggressively to prevent future disability.

And although I am lucky enough to have full coverage of Lemtrada - situationally and emotionally, I am not ready to take it.

He was great - he understood my family obligations and how I just can't be 100% out of commission for at least a month while my immune system gets obliterated.

For now - I can't do it.  In a year - maybe.

Plus - it's kinda scary.

So, perhaps to the chagrin of Neurologists treating MS these days, I am (sort of) going backwards.  But my Neurologist understands, supports the decision, and feels my MRI shows that I have time before treating more aggressively becomes more urgent.  I tried the Gilenya as best I could.  And got the Holter monitor results today, which did show some atypical ventricular and supraventricular ectopic beats, as well as isolated beats.  All this probably caused by the Gilenya, and explains how horrible I felt.

Copaxone is a first-line drug with the least harmful side effects.  I was on it for almost a year and a half.  Was it the most effective medication for me?  Probably not.  But was I able to get through daily life without worry, and side effects, and trips to the ER?  Yes, absolutely.

I still have to monitor the effects of Gilenya over the next few months, but for now - I get to start sticking myself with needles again.  Crazily enough - I am happy about that.

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