A couple of weeks ago I was browsing the National MS Society website for news on upcoming research, and I discovered the death of one woman during her Gilenya observation. As most of you know, the death occurred in December, and the official results have not yet been released. After reading this information I didn’t panic. It wasn’t until I began seeing news articles creeping up about 11 deaths attributed to Gilenya that my heart started racing, which is quite ironic in this case. The deaths are being mostly attributed to heart related causes.
Still, I tried not to panic. Until I checked the Gilenya support page on Facebook that has kept me sane. When I saw that many of my friends were being told to stop Gilenya by their neurologists, the panic began to set in.
Stop Gilenya? This couldn’t be happening. I’d tried Copaxone, Rebif, and IVIG. I didn’t know if I could take the anxiety of switching again.
But post after post noted that doctors were calling, asking patients to stop the drug, even those who had not experienced any adverse side effects. I checked my cell phone to see if there were any missed called or ignored voicemails that I often left to collect virtual dust for days, but there was nothing.
That evening, I skipped my Gilenya pill. I couldn’t bring myself to take it. I thought of the fear and panic I’d faced on the day of my own Gilenya trial, and my heart went out to the family who had lost their daughter. It could have been me, I thought. It could have been any of the 30,000 of us currently taking Gilenya.
The next morning I left a message for my doctor’s office. The doctor and his assistant were out of the office for a day and a half. I was going to have to wait to discuss it with them. That evening, I look at the box by my bed. I’d come this far, I’d succeeded for 11 months. I took the pill. My heart raced. I took Xanax. My heart raced. Was it the Gilenya? Probably not. I’m attributing it to anxiety. Who wouldn’t be scared? Who wouldn’t think twice? MS has me thinking in overdrive all of the time, unless it’s busy making me too tired to think all together.
Last Thursday I spoke with the doctor’s assistant. She is so sweet and kind and genuine. She’s not fake or forcefully kind. You can tell she isn’t doing her job. She’s loving it. She loves her job like I love teaching. And for that I love her. She gets it. Even though she doesn’t have the disease. And this is a difficult trait to find.
We talked for about 30 minutes, and she asked me to tell her everything I’d heard. It was like talking to my best friend about it. I told her about the one death (which they knew about) and then the articles publicizing 11 deaths. She hadn’t heard about that. But she reassured me that Dr. Smith had just met with representatives that had released information regarding the death. The woman (I am assuming that she was in her 20′s to 40′s, but that is just a guess) was taking two heart medications for blood pressure that interacted with the Gilenya. She explained that this was most likely the cause of her death. But why, why, didn’t Novartis and specialists know this in advance? Why didn’t they stop the heart medication or refuse the Gilenya? I remembered speaking to the Gilenya pharmacist before my trial, specifically asking if any of my current medications would interact. One by one they said no. But the truth is, they didn’t know.
Years back, when I was diagnosed with Raynard’s after being on Rebif my doctors had encouraged me to start a low dose of blood pressure medication. It would be something that I’d have to take daily since the Raynard’s would not resolve. I had the prescription filled back then, but I never took it. Not once. It’s still sitting in my bathroom cabinet. I’ve moved it three times from apartment to apartment to apartment. But I never wanted to take it. It was just another drug, and I knew it wouldn’t cure anything. For the past four days I’ve wondered. What if I had been taking it? Would it have been me?
I haven’t had the follow-up blood tests yet for Gilenya (since I started taking it in March of 2011). At my annual physical on February 14th my regular doctor will perform another EKG. Yes, I do see the irony of having my heart tested on Valentine’s Day. My specialist is sending me the lab work slip to get the blood tests for liver function and blood count. I will have the blood taken immediately.
In the meantime, I am taking Gilenya. I am going for my one year MRI in March, and I expect to hear excellent news. I am also tracking the research on BG-12, the new pill for MS which is supposed to be safer and possibly more effective than Gilenya. The doctor’s assistant said it should be available at some point in 2012.
So, hang in there. Don’t panic. I’ve already done it for you