Tuesday, November 26, 2013

 "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.

After about 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.
After 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.

 There 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.
When 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.
After I 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.