From GilenYA to GileNO!
Updated: Dec 27, 2019
Alright yall. It’s been over three months since I’ve started taking Gilenya as a treatment for my MS. It was a long process to get to where we are in the journey for the right medication, but if I’m being completely honest, Gilenya wasn’t a great path to choose, and here’s why.
When you begin the treatment for Gilenya it is required that you are observed by a medical professional for a minimum of six hours before you can be released with the medication. They monitor your heartbeat to make sure it doesn’t get too low and that you don’t have any adverse reactions to the treatment within 6 hours. I passed my observation and was released to go home. One month in and I started getting mild stomach cramps and pain in the mornings, but I typically always have stomach problems so I didn’t think too much of it and went along my way. Within another four weeks I began to notice that the stomach issues developed into daily morning bouts of diarrhea and nause, occasionally accompanied by cyclical vomiting. At this point I was also going through some major life situations that caused so much stress on my body that I didn’t think the medicine was causing these problems. I would take Promethazine suppositories to ease my symptoms and smoke a couple of bowls to top it off. However, it wasn’t long until after my personal problems resolved that I continued having bubble guts and vomiting. The cannabis would help me to stop feeling nauseous and potentially stopped the diarrhea, but the vomiting would come as soon as I would lift my head to move or shift my weight. That, for me, confirmed the treatment was being rejected.
It wasn’t long after that that I realized I couldn’t continue on with these side effects and that it was indeed time to call my neurologist. I scheduled an appointment for the following day and discussed my concerns about the medication to him. He agreed to take me off the treatment to try something else. He recommended another and final capsule treatment that I could try, called Aubagio, that may be an option for me. There are only three oral treatments out right now for MS, of which I’ve failed two of them so far. I’m hoping to find a treatment that works very soon, as I’ll be off my medication for the next four weeks until my new prescription is filled. If Aubagio doesn’t take, I will be forced to start injection treatments that I’m super fucking nervous about! I don't really like the idea of giving myself a shot every couple of days just to be well, but I may not have many other options.
In all honesty, I’m quite terrified to try Aubagio because I’ve read that the most common side effect is hair loss up to 2/3rds. HELL NO! And although not everyone responds to medications the same, I literally don’t want to risk losing my hair just to be ok. I accepted the offer to try to Aubagio on the spot because it was prior to my research about the treatment and it’s known side effects, but after digging into it I regretted choosing the option and contacted my neurologist. He did mention during our visit about an injection treatment that commonly has minimum side effects, called Copaxone, of which I’m familiar with by the use of my mother who is also diagnosed. I researched the treatment and, while it didn’t work for everyone, the ones who have had success with the treatment so far have shared their experiences on YouTube and Instagram and it’s put some hope and courage in me to try it, soooooo that’s what I inquired about trying in place of the Aubagio. Hopefully we can get everything figured out soon and I can continue on with my normal, skateful life! Until next time,