Diary Of A Gilenya Pioneer: Switching To Gilenya!

by Sara on February 11, 2011

Switching To Gilenya

Gilenya (Fingolimod)

As it turns out, similarly to my father’s results with Avonex, Rebif has caused my liver enzymes to shoot up to about 3X the upper limit of normal in the span of slightly less than 2 years. My options?

1) Tysabri : the risk of PML is too severe for me to brave this drug – reputed to be a risk of death or severe disability as high as 1 in 200 for some individuals and 1 in 2000 for others
2) Copaxone : statistically slightly less effective than interferons – works great for my father but I truly don’t want to do a daily injection except as a last resort
3) Gilenya : aka Fingolimod – when this was approved by the FDA I wrote a blog post to summarize all the information I could find – it is the only oral disease modifying drug for Multiple Sclerosis – DING! DING! DING!

I have chosen to switch to Gilenya.

My neurologist says I will be his third patient to begin the process. In order to be approved I have to go through a handful of doctor appointments. The process reminds me a little of Scott Pilgrim vs. The World and so far has involved about the same volume of blood. I’ve seen a GI for my liver enzymes and he has put me through a round of blood tests and is checking for tumors just to be certain that interferon was the sole cause of elevated enzymes. My optometrist will have to check a few more things than in a typical exam. My heart will need to be evaluated due to the risk of heart issues during the first dose. Saving the best for last – I have to lower my liver enzymes before starting the drug by ceasing interferon (no more shots!). The first time I take Gilenya I will have to spend the day in my neurologist’s office — if my heart rate drops I have to run in place to bring it up.

My father tells me that I will feel fantastic after I have stopped taking interferon for a couple of weeks. This is believable for several reasons – a functioning liver is probably a good thing, having interferon and its resulting flu symptoms out of my system is bound to be great, and my relief at the moment my neurologist told me to stop the injections made me realize how stressful the constant looming injections have been.

There are more risks with Gilenya than with the interferons and Copaxone, but I think I will fare pretty well. If I develop macular edema (0.4% chance), it may be possible to reverse. Other significant and potentially life-threatening problems can result from cold sores (I don’t get them) and chicken pox (had it when I was 12).

It certainly isn’t completely safe, and it can raise my liver enzymes as well. If it does, hello Copaxone. In the meantime I am extremely optimistic even if most of my friends and family seem apprehensive. The most recent edition of Momentum magazine outlines all the MS drugs currently in the pipeline. Some sound great, some sound dubious. Having traveled once with prefilled syringes, I hope that this medicine will work out and I won’t have to do that again. This isn’t all about convenience and pain, but there’s no denying that it plays a part in the decision. If you’re trying to choose a treatment, take a look at our Guide to MS page.

Having had an exacerbation a few weeks ago, followed by Solumedrol infusions and an MRI the next day, I do wonder if I’m as responsive to interferon as others might be. No drug will prevent all attacks, but it’s possible that Gilenya could be more effective for me than Rebif. If all goes well, and especially if all goes terribly, I’ll try to chronicle how things progress with Gilenya here on the blog for anyone who may be considering it. Certainly, anyone would prefer more research and anecdotal information before committing to a drug like this. But my liver says it’s time to switch and it really is one of those important organs. Wish me well!


What are your experiences or concerns with Gilenya?

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{ 1 comment… read it below or add one }

Henrique September 2, 2014 at 4:53 PM

Hi Sara,

Thanks for your post, was very important to me. In Brazil we don’t have many information about Gilenya, because this is a new drug here.
I will try to use Gilenya in a few months to control the MS. I am using Betaseron since the last year, but I have suffering with backache and fever.

Are you using Gilenya yet? How do you feel?



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