Trial and Error: Trying New Meds for MS
Today is the day I start Gilenya. I am sure all of you know how it feels — another day, another medication, that is what life with multiple sclerosis (MS) is like.
In 2008 I took part in the phase three clinical trial for Gilenya, which still went by the name fingolimod at that time. I only was in the trial for a couple of weeks because my liver reacted. To be fair, I had taken a lot of Tylenol the day before the blood test and I later found out I had been assigned the higher dose of the med during the trial.
Still, my doctors have been standoffish with placing me back onto this med since it hit the market. But recently, like many with MS, I have been funneled through a few other meds and was tired of their side effects, so I finally decided it was worth the risk.
Trial and Error
Shopping for the right med is one of those things I really never expected to do when I was diagnosed with this disease. I had always figured my doctors would have a set protocol of drugs and treatments, but MS has taught me that reality is a bit different than that.
The truth is that everyone is different. We all respond to the different medications in our own way. It isn’t as easy of a decision as only figuring out which medication has proven to be the most effective. We must also consider which has the most tolerable amount or types of side effects for our bodies.
The first medicine I tried was Rebif. It, for me, was fairly tolerable. I was able to take my medicine on time, every time, and I would take some ibuprofen and go to sleep early on the dosage evenings.
Five years passed and I became tired of sleeping through three evenings a week. I became tired of having the flu every Monday, Wednesday and Friday night. Mostly I became tired of being tired and began realizing most of the years of my son’s life were filled with this tired version of me.
Countless bedtime stories and goodnight kisses went missed. I was sad and it was time for a change.
Almost two years ago I began Tecfidera. Again, the drug did what it was supposed to do. I took my medication religiously and it rewarded me with preventing any new lesions to my brain and spine.
This medicine was different; I no longer had injections or the fatigue and flu three nights a week. In that way, Tecfidera felt like a cold glass of water.
On the other hand, there were the side effects. My experience with this med was severe stomach pains and turning red multiple times a day.
Dealing With Side Effects
I was told the side effects would lessen over time, but they didn’t. I was told eating proteins and fats when I took the pills would help, and it did.
The problem, for me, was that my life became a balancing act of eating the right foods in order to get past the side effects. Two years of my life yielded about 20 pounds of weight gain without a valid way to lose the pounds.
I became depressed and felt overrun and worn down. I needed to be free of these terrible side effects.
It is amazing what daily stomach aches and burning skin sensations can do to your mind after the days pile up.