Will and I spent most of last night in a smoky club in Charlotte. Getting to bed at about 4:30 am not the best way to spend the evening before my first dose of Gilenya.
It has been a bumpy road to get to the first dose. I completed a variety of tests to qualify, endured a prolonged and painful exacerbation brought on by the stress, and fought my insurance company for coverage.
I spent today in my neurologist’s office hooked up to heart monitors and trying to stay awake. I read, slept, and exercised to bring up my heart rate. For the most part, it went alright.
Unfortunately, I didn’t know to remove my dark nail polish before this so they had to send someone out to buy nail polish remover before I could begin. There is nothing like the shock on a man’s face when he realizes that nail polish remover actually removes nail polish. The doctor went over my starter kit with me just to see what was in it. I will never understand why pharmaceutical companies waste so much money and marketing on useless things like pens people will never use, tote bags they don’t want, etc. And then there was maybe one valid bit of literature with it. Mostly there were packets of word puzzles (the words were things like lesions and myelin), and flash cards for how to do exercises like lifting your toes (obviously we all need instructions on toe-lifting).
Two weeks worth of medication were also included. Gilenya has strange packaging. You pinch one side of the box and pull on the other. When I received my first month supply the box did not work right at all. It was a wrestling match. These, however, worked perfectly. I was ready for a fight but the package just opened correctly and I took my first dose.
Having had little sleep caused a problem. When we came home last night all smoky clothes went into the washer before we showered and went to bed. After they hooked up all the wires and left me in a sleep study room so they could watch me with cameras, I covered up with Will’s non-smokey jacket and started reading. Soon the tech came in and shook me to wake me up. He gave me a blanket and said that my heart rate was still within the normal range.
I tried to stay awake. I really did. But here I am in a bed with Will’s jacket to prop up on, music on my iPhone, a blanket, and books on 3 1/2 hours sleep. Soon he woke me up again. Heart rate is too low – time to take a walk. I’m not sure he knew why I was there. He seemed suspicious that the medication was making me favor my left side, and make sharp turns clumsily. Also, he really needed a cigarette. After I explained that I was there taking MS medication and had muscle weakness and knotted muscles on my right side I think he got the idea. Not much I could do about all of that. Adding Valium to the mix today seemed like a bad idea so I had avoided that.
Back to bed, determined to stay awake, I did fairly well. The staff bickered about where to get lunch and brought me a sub. Then my heart rate dived too low again. I finished my first book walking in place and read about half of another. Eventually my heart rate rose enough again and I was able to sit back down. The rest of my first dose went without incident. According to the literature, I’m allowed to continue taking it if I can keep my heart rate above 55. The lowest my heart rate dropped was 58, but it stayed at that for about 20 to 30 minutes even with exercise. Over the next month my body should adapt. In the meantime I’m mostly just cold and sleepy.
The first dose should be the most difficult and tomorrow will probably be about the same, maybe a little better. I’m not too worried. Now I just have to keep a check on my vision, lymphocytes, and liver enzymes.
I learned today that my neurologist favors socialized healthcare (smart man) and that he likes Atlas Shrugged (the book, not the movie). I also asked him how many MS patients he had (about 30) and if any had ever asked him about medical marijuana (no, but now 1 had). He saw it as a medicine that will be difficult to really peg by the FDA for regulation as medication, was aware that THC wasn’t the useful component for treatment (even though it is available in legal pill form), and doubted that South Carolina will legalize it anytime soon.
In fact, a day in my neurologist’s office and I learned a lot about his entire staff. Now I am home and looking forward to a long break before I return to a doctor’s office.
Finally — finally I am officially on Gilenya!
What was your experience when you took your first dose of Gilenya or other MS therapy?