Yesterday I began taking Gilenya, the first once-daily pill for reducing the number of relapses in people with relapsing forms of MS. There are some serious side effects so in addition to an EKG; I was required to have my blood pressure taken every half hour for the first six hours of taking the pill.
My concerned husband took the day off of work to be with me in an event something went wrong. Luckily, I felt fine, but was still required to sit in a tiny, cold, clinic room all day. We decided to take advantage of our “free time” and use the hours of waiting as a mini date. I laugh, as our unglamorous date still was the highlight of my week. What a treat it was to sit and talk uninterrupted (minus the nurse) for hours.
Unsure of my future on Gilenya, I asked Jeri, who writes the blog Gilenya and Me a few questions about the drug.
How old were you when you were diagnosed?
I had just turned 38.
What were your initial symptoms?
Mine started out with one foot feeling like it was asleep and then gradually, over the next two weeks, the numbness progressed from one foot to the other and travelled up both legs until I was numb to the waist. All the while I became weaker and weaker to the point of needing a walker to get around.
How long before your initial flare up went away?
As with most of the flareups I have had, the first one took a good three months for recovery.
Did you ever get back to “normal”?
Back then my MS was particularly aggressive and I’d no sooner heal from one attack and I’d be having another. I would return to normal, but normal never seemed to last very long.
Have you noticed changes with hot and cold?
Weather-wise I become extremely fatigued if I’m out in the Florida sun for too long and I get very stiff if I’m too cold.
The way I perceive hot and cold as sensations, I am very much more sensitive to them now. Sunlight, shining through a car window on my black pants is almost excruciatingly hot, and I can’t get in the pool if the temperature is less than 85 degrees or I instantly cramp up. I’m very temperature sensitive.
How does MS affect your family most?
I was diagnosed when my youngest was 6 months old. During his first eight years I had my worst relapses and spent much of my time using a cane, walker or wheelchair. I was unable to run and play with him in the back yard. This made him a very compassionate, patient and caring child. He has more empathy now at 14 than any adult I have ever met. As for the rest of my family, they used to be quite overprotective of me, worrying I’d relapse at the slightest thing.
Have you noticed changes in your relationship since you have been diagnosed?
We went through a rough patch at first. The disease was new to both of us and at times very frustrating. We split up for a time, but got back together. It is what it is. He’s learned a lot and grown with me over the course of the last 14 years.
Have you tried any treatment?
My neurologist who diagnosed me said I had a particularly aggressive case of MS and should start treatment right away. He recommended Copaxone due to the least amount of side effects. (There were only 4 available drug choices at the time and Copaxone was the newest and only one that wasn’t an interferon.) After eight years of Copaxone not really working for me, I entered a clinical trial for Gilenya in 2007. The trial, and its extension phases, lasted until my exit in January 2011 when I began taking Gilenya by prescription. It has worked very well for me as I have not relapsed since starting the trial in 2007.
Do you exercise?
I try to walk some every day and I have a stationary bike I have vowed to ride more often, but I have no set exercise regimen.
Do you follow a specific diet?
I tried to do the Swank Diet when I was first diagnosed but it’s so strict I gave up quickly. Over the years I have learned that certain foods make me feel better while others make me feel worse. I try to avoid anything in excess – especially carbs and sugar – eat lots of anti-inflammatory foods, and drink lots of water.
How has your experience with Gilenya been?
As I already mentioned, I started Gilenya in 2007 during the clinical trial (I was unblinded later and it was revealed to me that I had been on the real drug at the .5mg dose since day one), I have no side effects. The worst thing about taking it is remembering to take it. I have plenty of reminders to help with that.
Have you MS flare ups lessened since you began the drug?
My last relapse was April 2007.
Have you experienced any side effects from Gilenya?
Upon first dose, my heart rate dropped slightly but recovered by the end of the six hour observation period. During the first six months I noticed an increase in both upper respiratory infections as well as urinary tract infections. I had one of each on a monthly basis at first. Then things calmed down and after six months I was back to normal. Now it has been over two years since I have even had a head cold.
How soon did you begin noticing changes in your body after you began Gilenya?
I can’t say I took the first pill and noticed that anything changed. Nor the second, or third… Rather, it was more a gradual process. Since I wasn’t relapsing, my body had time to heal.
What has been the biggest challenge of MS?
The biggest challenge has been accepting it. Realizing I have it and there is no cure. Back when I was relapsing all the time I was so overwhelmed and depressed about how diminished my quality of life had become I was considering suicide. That’s when I turned a leaf and vowed to do all I could to fight this disease. That’s when I joined the TRANSFORMS trial.
What has been the biggest blessing of MS?
The biggest blessing of MS is that now I have found my calling. Without my diagnosis I would never have overcome my fear of public speaking. I would never have used my voice to be an advocate for patients everywhere. MS has given me more than it has taken from me. That’s how I choose to view it now and I can live with that.
Jeri’s positive experience with Gilenya gives me hope that this drug will do good things for my body. Please visit Jeri’s blog for more information about Gilenya.
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