"I was having 3-4 exacerbations a year. They finally stopped on Rituxan-Gilenya has been continuing that role for 2 years now"
I was having 3-4 exacerbations a year Stan. They finally stopped on
Rituxan! Gilenya has been continuing that role for two years now.
I'm still on Gilenya, and still loving it.I
have been on a number of different MS drugs in the 9 years since I was
diagnosed with MS. Copaxone, Betaseron, Tysabri, and Rituxan. Rituxan
was the only one that really worked for me but, my neurologist didn't
want me on it more than 3 years. As she said, "After three years, who
knows what else will be out" Fortunately for me, after 3 years, Gilenya
had just been put on the market.
When I took my last dose of
Rituxan, I already knew the drug I wanted to try. Of course there are
potential side effects, but what drug doesn't have that? I was just
excited after years of shots and IV's to have an MS drug that was just
one pill a day. Definitely easier than a shot a day.
a month, I was noticing changes. I know Gilenya, like all MS drugs,
wouldn't treat symptoms, but I felt like it was. Biggest change for me
was my balance sud denly got a lot better.
six months or so, it was time for an MRI. Now I could see if it really
was working. I looked at it first with my neurologist's nurse
practioner. She said the words I never knew could sound so sweet. "You
have no new lesions." I almost cried. That was the first time in
seven years, since I was diagnosed, there were no new lesions on my
brain. Last year I had my second MRI since starting Gilenya. This one
was a brain and spine MRI. Once again, I had no new lesions on my
brain, and the two lesions I had on my spine were gone. Not completely
gone, but the word my neurologist used was they were "dead."
I'm still on Gilenya, and still loving it. The
only things I would change is having to call a company in Wisconsin (5
to 6 hours away from me in Ohio) to get my refills, which my neurologist
tells me may never stop, or at least any time soon. Plus seeing a
dermatologist once a year to make sure I don't have skin cancer, which
there is a whopping 0.5% chance of getting on Gilenya. I also have to
get tested to make sure I don't have macular adema, which is something
that can grow on the back of the eye. My neurologist tells me, if I get
it, I just have to stop taking Gilenya. That one isn't as much of a
pain for me because I already wear glasses, and my opthamologist can
look for it at my yearly appointment to see if my glasses prescription
has changed. Plus, an opthomologist (the one who got me diagnosed, and
who my nurse relatives tell me is called the MS eye doctor in the area)
told me noone had gotten macular adema since the drug was released, but I
guess someone in the FDA trial got it so they have to make sure.
was a time they were going over the autopsies of anyone who had ever
even taken one pill of Gilenya, including the person that killed
himself. There was one woman who died after taking one pill, but she
had heart problems her neurologist didn't know about. Before starting
Gilenya, I had to have an EKG done to make sure my heart was strong
enough. So if you have heart problems, this is not the drug for you.
Tecfidera came out, I heard so many good thing about it, I asked my
neurologist if he thought I should change. He said he han't seen any
signifigant improvements on it that would make him think it was better
than Gilenya. He put them on basically the same level.
was diagnosed, I was having 3-4 exacerbations a year. They finally
stopped on Rituxan, and Gilenya has been continuing that role for two
years now. If anyone is curious about it, I would definitely recommend
it, at least if you don't have heart problems.