Hi all,
I have been on Gilenya since February 10, 2012. I have reached a level of frustration that has just about caused me to give it all up.
First, I have been going back and forth between Novartis, NORD, Express Scripts and Anthem to try and decern who is supposed to be assisting me with my co-pay. Just going in circles at this point.
So far the side effects that I have experienced are massive diarrhea, daily headaches, nausea, blurred vision, as well as an episode of blindness (apparently related to migraine and not macular edema), chronic cough, 2 ear infections (new to me at the age of 48), dizziness, and what feels like an increased weakness and parathesis in my legs.
I went to several of the Gilenya classes and heard nothing but rave reviews from the Gilenya patients who spoke at the classes. "Life changing" and "Has dramatically improved my life for the better" are just a couple of the comments that I heard. Of course, I have tried to contact my Neuro at UCSF, as well as both of his assistants to discuss these side effects, with no return follow-up, but to be honest, I felt a hell of a lot better before Gilenya.
I should mention that I have PPMS and was willing to try it anyway, hoping for a positive outcome.
I know that stopping G is a personal decision, but I'd still like some input from those of you on G and/or those of you who were on G and chose to discontinue its use, i.e. reasons, side effects you may have experienced, etc.
Thanks so much,
Cat
I have been on Gilenya since February 10, 2012. I have reached a level of frustration that has just about caused me to give it all up.
First, I have been going back and forth between Novartis, NORD, Express Scripts and Anthem to try and decern who is supposed to be assisting me with my co-pay. Just going in circles at this point.
So far the side effects that I have experienced are massive diarrhea, daily headaches, nausea, blurred vision, as well as an episode of blindness (apparently related to migraine and not macular edema), chronic cough, 2 ear infections (new to me at the age of 48), dizziness, and what feels like an increased weakness and parathesis in my legs.
I went to several of the Gilenya classes and heard nothing but rave reviews from the Gilenya patients who spoke at the classes. "Life changing" and "Has dramatically improved my life for the better" are just a couple of the comments that I heard. Of course, I have tried to contact my Neuro at UCSF, as well as both of his assistants to discuss these side effects, with no return follow-up, but to be honest, I felt a hell of a lot better before Gilenya.
I should mention that I have PPMS and was willing to try it anyway, hoping for a positive outcome.
I know that stopping G is a personal decision, but I'd still like some input from those of you on G and/or those of you who were on G and chose to discontinue its use, i.e. reasons, side effects you may have experienced, etc.
Thanks so much,
Cat
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