new to this is my ms but i wish it weren't

[proudmutt]

hi,
I am curious to find people on Gilenya and find out how likely side effects to it are.
personally I am the side effects queen - to almost all pharmaceuticals. my entire ms history is one with a wide trail of discarded meds I could not tolerate.
fortunately I was on Novantrone and Copaxone which detuned my initial lesions then kept me lesion free for about 10 years. then I had to switch and luckily went to Tecfidera without mishap (!) which worked perfectly for another year.
now that I am turning 65 and forced to go on Medicare, they are taking me off Tecfidera and forcing me to experiment with Gilenya.
If I can take it at all - which I very much do not want to do after reading the S.E. list it carries (I have never balked at one before , but that one is over and beyond the pale!) i am curious about the likelihood of side effects it is apt to have.

Back Ground: Dx '04 after being put in a wheelchair almost overnight with a back injury. sent to hospital for op., expected to walk out. neuro surgeon discovered lesion at exact location of surgery site (C-5,6), left H 7 days later w/ definitive MS diagnosis instead - "thoracic demyelination syndrome" (which NOBODY has ever heard of - means almost all lesions at T 8,9, +10)

I am glad I found this forum , and to see how well informed people on it are!! THANK YOU FOR HAVING ME.

[lyndacarol]

Hi and welcome to ThisIsMS, proudmuttglad. We are glad you found us.

I have not used Tecfidera or Gilenya, but there are others here who have. Perhaps posting your questions to the specific subforums would get attention and answers more quickly.

[mct814]

Welcome! Glad to have you here. The only treatment I have experience with is Copaxone, but as lyndacarol said, there are members here who are more familiar with it. My mother was on Gilenya for quite awhile, so I'll check with her and see what kind of side effects she had from it.

[mct814]

So I talked to my mother, and she says that she did not have any negative side effects from Gilenya. She is not on it anymore as it did not help her, but it wasn't an unpleasant drug.

[proudmutt]

that is encouraging. after reading all the side effects they post, it is particularly so.
thank you for taking the time to ask for me!!!!!