I just took a dose of Gilenya in Los Angeles. Background: I was on ABCRs for seven years, dropped Avonex around New Year's due to a breakthrough relapse, went on Tysabri but had to leave because I had developed antibodies. After a frustrating two months without treatment, I finally got on Gilenya last night.
In the screening process, I learned that I have an unusually low heart rate (probably due to good overall cardio health - I'm 29 and exercise regularly) and a bundle block, or minor disruption of the electrical system in my heart. The bundle block is asymptomatic and I wouldn't have known about it without the ECG and subsequent echocardiogram. My doctor became less enthusiastic about Gilenya after reading these findings, but the other options she offered me-- going back to ABCRs or trying to get into the Ocrelizumab study despite the fact that I likely wouldn't qualify because I'm currently going through a relapse-- didn't appeal to me. In consultation with a cardiologist, my neuro decided to admit me to a hospital overnight for my first dose of Gilenya. I was hooked up to a heart rate monitor, vitals were taken every hour, pacer pads were attached just in case, and I was given an IV in case they needed to boost my heart rate with Atropine. Obviously I'm very satisfied with the precautions taken.
My baseline heart rate averaged in the low 60 bpms with excursions as low as the low 50s. (This is quite low unless you're a competitive athlete.) I took the pill at 4pm. By night time, I was dipping below 50 bpm regularly. After midnight, I settled squarely in the 40s. I was given Atropine but it didn't do much (alarmingly.) My overnight low was 37 bmp, which apparently is pretty dangerous, but I never felt off symptomatically. I think a good part of the drop in heart rate was due to my getting sleepy and less active as the night progressed. Whenever I sat up, checked my phone, went to the bathroom, etc, my heart rate would go back to the 70s. Then it would plummet again, often in a matter of seconds. My blood pressure and other vitals remained normal all night. An ECG in the wee hours revealed nothing unusual.
This morning my neuro recommended that I not take Gilenya again. She was prepared to allow me to try one more dose in the hospital tonight, but warned that if the same thing happened she'd want me to go off it. She did, however, offer to prescribe me Rituximab off-label. I'd asked her to consider that before but she had been hesitant. So I feel like I earned something by going through this ordeal. By now, 22 hours after my first dose, I still dip under 50 bpm once or twice an hour, but my heart rate is hovering around 70 as I type this. I haven't dipped below 40 since the sun came up.
Hope this is helpful to someone navigating their first night on the drug. I know I was looking for something like this last night. I'll post about Rituximab soon in the appropriate forum I hope.