So you’ve had it recommended to you by your neurologist to start treatment for your relapsing remitting multiple sclerosis. You may have been given a few options to look through, with wads of literature with the pros and cons for each medication. But in the end you have chosen to go with Gilenya (Fingolimod). And now you don’t really know what to expect, or prefer to hear personal experiences rather than the booklet from the drug company. This is my journey of what to expect when starting on Gilenya for helping with Relapsing Remitting Multiple Sclerosis. (But remember I am not a medical practioner…this is just my personal experience).
When I saw my MS nurse with my choice about which medication I had chosen to start after my relapse a few months prior, I was given a plastic sleeve with notes to take to my GP about what I was about to start and considerations that would be needed about treating my health in the future. I also had some tests to do before a script would be drawn up. And the final thing. I had to finish breastfeeding my toddler before I could start.
That was probably the most difficult part. Seeing my nurse in April, and finally weaning my toddler in late December. Then it had been so long I had to get the tests redone to be valid.
Before starting Gilenya I had to have blood tests to screen for a number of things, including immunity to Chicken Pox. One of the tests wanted wasn’t available at all pathology centres, so it pays to check that out beforehand.
Then there is the ECG required to get a baseline reading. I finally had my first one where I didn’t have to completely remove my bra and top, which makes me wonder why so many places still insist on that. Most undignified for us ladies.
And lastly an OCT on your eyes as a baseline to check swelling of the optic nerve doesn’t happen.
My GP also sent me to a dermatologist to get a baseline check for skin cancers after reading the literature provided to her and the incidence of skin cancers in the trial.
With all those complete, an authority script to purchase the medication was written up for me. Allow a few days for the chemist to get it in stock as not all keep some in stock unless they have a few patients on it.
I was booked in for an appointment to be monitored for 6 hours with my first dose. (A requirement by the Australian government for it to be on the PBS).
I had been told to expect an ECG before starting, and hourly through the time, as the 5 hour mark was where the heart rate could drop a bit with the first dose.
What I got was briefly seen by doctor who explained how the day went. Told to take my first dose, and the time for 6 hours was started. Then an ECG at the end and the go ahead from the doctor if I could go home. The bit in between was a long boring wait in the waiting room…armed with books and iPhone.
The nurse had forewarned me to be diligent in taking my tablet every day at the same time for at least the first month. If you miss a dose in that beginning part, you have to do the 6 hour observations again. When on for longer than that, missing up to 2 weeks is okay if you get caught out on a holiday.
May your journey starting Gilenya go smoothly! I’m hoping this is a positive thing in my MS journey and that it works well with minimal side effects. So far it’s been good for me for 10 months.