Originally posted by headrift
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I stopped taking Gilyena in April of this year (after having been on it since 8-2011). I never felt 'good' while taking it and the fatigue has gotten worse (if that was possible). Starting last fall I started having horrible headaches (think migraine) and blinding sensitivity to light. I had to have a tooth extracted because I could not get rid of infection. I went thru all my doctors, but nobody could find a cause for any of it. Then in April I had a skin cancer (melanoma) removed.
After checking Gilenya's website I saw that all of these side effects were listed. So I simply stopped taking it. No I haven't 'fessed up to my neuro yet. But the worse part is that I have had 2 defined relapses since then vs 2 possibles during the 5 years before .
I was on avonex in the beginning (20 years ago) and did well on it - I even 'felt better' - but I am VERY needle-phobic. The stress was, IMO, worse than MS was at that time. But it seemed to 'hold me over' until I started G (there were a number of years that I took nothing and did well).
I was hoping that G would do the same, but that doesn't appear to be the case.
I have an appointment with a new neuro in November - if I last that long - and will see what he has to offer me.
Lord I HATE taking medicine!
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