The Start of Something New
I have been on Gilenya since it came out. For me, that has been a little over ten or so years. It has been an excellent medication for me and has kept my MS from progressing. Other than a few rough days, I have felt great on it. About a year ago, I went in for routine bloodwork, and they found that my lymphocytes were deficient. On Gilenya, you usually take one capsule once every day. After finding my bloodwork results, my specialist recommended I take it every other day to see if that would help.
My lymphocytes were very low
After having my triplets in August, I immediately got back on Gilenya. Still, I could soon tell that something was off with my body. I just chalked it up to being exhausted as a new mom of 4; having a five-year-old and three babies with minimal help is not often a walk in the park. Ha! Thankfully, the babies are great sleepers, so I knew it wasn’t from lack of sleep. I couldn’t quite shake how fatigued I was, and it was slowly getting worse, so I let my MS Specialist know. They ordered a CBC (Complete Blood Count), and come to find out my lymphocytes were very low.
Time to go on a new medication
Our lymphocytes are a type of white blood cell that is of great importance to our immune systems. They determine our immune response to infection. My lymphocyte count was down to 0.1. The typical lymphocyte range for an adult is 1.2 to 3.4, whereas my MS specialist wanted my range to be at least 0.5. After doing all that they could on the Gilenya to keep my lymphocytes in a healthy range, my doctors sat down together. They decided that it was time for me to go on a new medication. In general, that’s not something to be upset about, but after I got off the phone with them, I sat down and cried.
The anxiety of changing MS medications
I was terrified to change medications after all of this time. Changing MS medications to me is like playing Russian Roulette; you never know if it will help you or hurt you. Honestly, I am still quite anxious about it. I’ve come to find that with MS, when you find a disease-modifying medication that works for you, you stick with it! When I know something is going well, it is scary for me to make a significant change. Especially a change that has the potential to make my MS progress or worsen.
Injections vs. oral drugs
Since my diagnosis at fourteen, I’ve only been on two MS medications. Before Gilenya, I was on Copaxone. I soon decided that giving myself injections daily was not my cup of tea. The injections caused painful injection site reactions and other unwanted changes to my skin. I was giving myself my injection one day in my arm and hit a nerve. That was the day I knew I was done with that medication and injections in general! Once they came out with an oral drug, I was so relieved! I started Gilenya and never looked back until this past month. It’s been a little over a month since they asked me to stop the Gilenya. I had to stop it for my lymphocyte count to raise enough to start my new medication. My doctor has prescribed me Zeposia, and I am set to start it within the next few days.
Switching to Zeposia
The FDA just recently approved Zeposia in March of 2020. According to multiplesclerosisnewstoday.com, Zeposia is only the third oral S1P receptor modulator approved for treating relapsing forms of MS. The good news is that it’s a once a day oral medication like Gilenya. Thankfully, Zeposia is very similar to Gilenya, not just in how it is administered but also in how it treats relapsing-remitting MS. Another plus of this medication is that it does not require a first dose observation as Gilenya did. Gilenya could cause side effects such as slowing of the heart and a greater risk of infection. While Zeposia has many of the same side effects, it has a better safety profile. Zeposia is thought to act by retaining certain white blood cells in the lymph nodes, which keeps them circulating and entering the central nervous system.
How do you feel about switching medications?
I spoke with my nurse navigator through the Zeposia 360 support program earlier in the week. While I still have my fears, I am ready to get back on medication. I never realized how much the Gilenya truly helped, especially in terms of my fatigue, until I had to get off it. I hope for the best in this new medication journey and that it will keep my MS stable! Let me know your thoughts and feelings about switching to new MS medications. I would love your input!
How many specialists did you see before finding "The One"?