Gilenya FDO Day...

Happy Saturday, ya'll! The day is finally here - my First Dose Observation for Gilenya, the DMD (disease modifying drug) that my doc and I have chosen for my first MS treatment option. As with any chronic illness, MS is constantly changing, and the way it responds to treatment changes, too. So, there's no "one size fits all," or even "one size fits one forever." Gilenya may work for now, or it may not. It may work for a while, even a few years, and then it may cease to be effective. There's no road map for this disease, so we just make the best decision we can with the information we can gather at the time. As all my other MS beasts know, the DMD is only part of the treatment anyway; the rest of it includes a healthy diet, exercise, rest, supplements, and social supports. Optimally, they all work together to prevent future relapses and the growth in the number or size of lesions. We all know that's not a guarantee, though. So, I'm learning, slowly, that it's a fine line between being realistic and pessimistic; staying positive, versus ignoring the facts and challenges of the disease. It's a balancing act, for sure...

Okay, so more about Gilenya. Here's basically all you need to know - It's a pill, and I take it once a day. Supposedly, it works by sequestering some of my white blood cells in my lymph nodes, so they don't get released into the bloodstream, where they can attack my nervous system. Hopefully, it gives my body a break from the attacks on my myelin (sheath that covers the nerves). I won't bore you with the possible side effects...because there really isn't an MS drug around that DOESN'T have side effects. The hope is that the benefit would outweigh the risks.

It took me a few hours to type this post. I kept getting distracted by the whims of my own crazy ADHD brain, and then I was interrupted by Dr. Edwards (the FDO doc) for BP and HR checks every 30 minutes. He JUST left, about 15 minutes ago, and I'm sitting in the living room with Lily and Eli. Eli's watching something on his Kindle, and Lily and I are watching "Anne With an E," the new show about Anne of Green Gables, on Netflix. I'm excited to see this with her, because I loved the story when I was little. (Oh, and Anne has red hair...just like our Itty Bitty.)

The FDO is over, and I passed with flying colors. They do an EKG at the start of the visit, and one at the end of the 6 hour time period. Throughout the visit, they take blood pressure and heart rate measurements (sitting and standing) every 30 minutes. There is a slight risk, with Gilenya, that the QT interval of the heart will be slowed and cause an "electrical short" in the heart's rhythm...which is why they take all of these precautions. My heart rate only dropped slightly at the very beginning, around hour 2, and then stayed in a healthy range for the rest of the visit. My QT interval only changed by a few digits, so I was given the thumbs up by Dr. Edwards! I'm going to attribute some of my success to having a healthy HR and BP from a consistent exercise regimen...I gotta take credit where I can, ya'll!

Looks like I'll be taking my next dose in the morning. Here's to hoping and praying that it does what it's supposed to, and that I experience as few side effects as possible..and hopefully NONE!

Have a great day, ya'll!!