Tuesday, July 12, 2011

Gilenya: Day 01

(This covers the time from the last post until 11 AM today.)

Current medication: Gilenya, Ibuprofen, Baclofen, Lamotrigine, Tizanidine, Lyrica, Vicodin

Mood: Anxious, sad, afraid.

Physical: terrible headache (7 out of 10), nausea, scratchy throat, tingling lips, cough, extreme fatigue, dizziness, sharp pain in right calf, throbbing-ache in both legs, stiffness in both legs, hypersensitivity in both legs, right eye pain with movement, shadow-like presence in lower right quadrant of right eye, difficulty with balance.

Neurological: difficulty focusing/multi-tasking, occasional slurred speech/lazy tongue, confusion, difficulty saying certain words.

Sleep: 2 hour nap then 5 hours uninterrupted, no “sleep episodes” today.

Other (falls, dropping items, etc): Extremely high blood pressure

Aids: canes

Tests/Results: Pre-Gilenya skin check clear, high blood pressure throughout the day before and after gilenya

Appointments: 07/12/2011 11:30 AM with NP to discuss side-effects, scheduled to see PCP on 07/15/2011 at 10:45 AM

Started Gilenya today. Shortly after the first dose I began feeling a scratchy throat and tingling lips. After 1 hour, by blood pressure spiked dangerously high in response to the medication, but there were no other cardiac symptoms so we just waited for it to return to normal on its own. As the day progressed, I developed a cough, headache, and felt numbness/tingling in lips. When released at the end of the observation period, the NP suggested I return for observation the next day but I refused and promised to check-in the following morning. When I came home I was exhausted and took a nap and an anti-inflammatory. I felt very cold and shivered the whole time, but didn’t have a fever. After the nap I sat up for 30 minutes or so then returned to bed for the night. It took about 90 minutes to fall asleep because I couldn’t get warm, but once I was sleeping, I stayed asleep until my alarm rang. I woke up feeling much worse. The headache was almost unbearable. I took the second dose of Gilenya at 6:10 AM and about 30 minutes later the scratchiness and tingling returned. My energy was low, but I went to work. I checked-in with the neuro’s office around 10:45 AM and after reporting my symptoms they wanted to see me immediately. I left work and headed to the office.

1 comment:

  1. I had numbness in my tongue and lips, too! The nurse said she'd never heard that side effect before.