After failing my regular neuro checkup for the first time in years, my doctor decided to change my disease modifying therapy to Gilenya, feeling it was the best, most reliable option. I didn’t know what to expect with my first dose of Gilenya.
Venturing into the unknown – namely, beginning a new, unfamiliar medication – scared me. Throughout my MS journey it has taken my body months to get accustomed to new medications so I feared how long it would take me to adjust to the Gilenya. I wasn’t sure I had the energy to find out. However, realizing I did not want to risk a flare-up or worse, I took the necessary leap of faith.
Because I lived a great distance from my doctor’s hospital and the initial dose observation was 6-8 hours, it was arranged for me to have the first-dose administered at home. Nurses from the Gilenya Go program coordinated with my doctor’s office and me to arrange all of the necessary tests and home-based appointments; all provided at no charge to me.
Two weeks prior to first dose administration a nurse was sent to my home to take blood and perform an eye exam. Prior to taking Gilenya it is imperative to know if you have antibodies against chicken pox (if not you must have an immunization prior to first dose) and to get a baseline of the health of your macula (G can cause macular edema). Plus there was an abundant amount of paperwork to complete. This all took approximately 30 minutes.
Once I was cleared for this medication (approximately two weeks later), a doctor and nurse were sent to my home to administer my first dose. This entailed monitoring my heart rate and blood pressure for an entire day. I was permitted to do anything I wanted as long as I stayed inside the house and did not overexert myself.
Upon their arrival, they set up all of their equipment, reviewed a questionnaire with me, did an EKG, took my blood pressure, pulse and temperature. Then we waited. I inquired as to when we would be taking the first dose and the doctor replied that he was waiting for approval from some other doctor based on the results of what we had just done. He said it would only be a few minutes. Well, that turned into over an hour and I started to get antsy. I finally stated that we had to get started if we didn’t want to go into the evening hours. The doctor made me, the patient, take full responsibility for starting the medication without proper authorization. I was getting impatient and was fine with that. I took the pill and began waiting. Not sure what I was waiting for, but I guess I was waiting for my blood pressure to drop like all the literature said would happen.
Every hour my blood pressure and pulse were checked. All seemed to be fine until the fourth hour. My pulse and BP slightly dropped. Not too low but low enough to give the physician concern. He instructed me to gulp down a strong cup of coffee and eat a sandwich, after which I felt really sick from the caffeine surge (I’m caffeine sensitive) but my system regulated itself within an hour. Nothing else happened. The day was unremarkable.
After monitoring me for eight long, boring hours and a final EKG, blood pressure and pulse check revealing all was normal, the nurse and doctor packed up and left. I was given a starter kit of medication to tide me over until my first bottle was shipped and instructed to see my neuro for a checkup in 3-4 months.
I’ve been on G for four months and have experienced zero noticeable side-effects. This was definitely the easiest transition from a physical standpoint. If you are fearful of starting G, rest assured the Gilenya Go people have it all under control and will not risk your health or safety if they do not think you can tolerate this medication. They take every precaution possible. Your experience will be different than mine because you are different than me. Listen to and trust your physician and your body. Take the leap of faith if Gilenya is prescribed to you. As a resource, join the Gilenya (Fingolimod) Users Support Group on Facebook. Remember, you are never alone.
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Barbara inspires hope through mindful health and a meaningful life. By combining healthy living, spirituality, and neuroscience principles, she helps people understand how to be proactive in their health care versus reactionary in their sick care so they can feel great in their body and in their life. Her greatest wish is to never hear a person say, “I should be taking better care of myself.” To learn more and receive her FREE guide, visit Appelbaum Wellness. Be Present – Be Purposeful – Be Well