In October 2010 I first learned that Gilenya had been approved by the FDA. The first oral treatment for Multiple Sclerosis! So exciting – but I didn’t dare to really believe that I would be switched to it. I knew that insurance would never cover it as long as I was able to use interferon instead, and I had been using Rebif for awhile.
The following February I learned just how high my liver enzymes had gotten (7x the cutoff for normal across the board). My neurologist finally acknowledged that I had to stop taking the injections. It was shocking how freeing this was – the needles had always felt remarkably painful. Knowing that I didn’t have to take my shot when I went home made me want to celebrate. While the circumstances were less than ideal, I took the opportunity to switch from interferon to Gilenya.
I’ve written several additional posts about the process.
- The Surprising Slowness Of Getting The Process Started
- Pre-Approval Tests
- The First Time Gilenya Contacts Me
- Insurance First Declines And Then Approves The Claim
- My First-Dose Experience
- My First Month On Gilenya
- Official And Unofficial Side Effects Of Gilenya
- My Neurologist Approves My Continued Use Of Gilenya
- Year One Of Gilenya
- Latest Test Results On Gilenya
Gilenya was a very successful medication for me for several years until my white cell count was too low to continue on a normal dosage at which point I began taking it every other day. I continued to take Gilenya until 2017 when I experienced 2 relapses within a 2-month span. Until the prior year, my disease progression had been stable, but it was at this point that my neurologist determined that my dosage was no longer providing adequate protection and I joined a clinical trial to gain early access to Ocrevus.
I am often asked about my experience with Gilenya, and can honestly say that, had I been able to physically stay on a full dosage, I would happily have continued my use of Gilenya. Treatments affect each individual differently, and, unfortunately for me, my white cell count tanked just a bit too much to stay on it forever.
I began taking Ocrevus in January 2017, and although it has come with a lot of side effects, I am happy to say that I have had no disease progression since beginning treatment!