Monday, July 11, 2011

Gilenya: Day 00

(This is the first post in a series I'm hoping will document the changes that occur while I take Gilenya. The details of each post will cover anything that happens from the time of the last post to the time of the current post unless otherwise specified (versus a 12:00 AM-11:59 PM schedule). Every 4 weeks I will do a retrospective/summary entry using the same format.)

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

Mood: Anxious, hopeful.

Physical: 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, slight blurry vision helped with reading glasses, difficulty with balance, headache, mild fatigue, sleepiness.

Sleep: 6 hours, woke up approximately 5 times (momentarily) during the night, no “sleep episodes” today.

Neurological: difficulty focusing/multi-tasking, occasional slurred speech/lazy tongue.

Other (falls, dropping items, etc): None.

Aids: cane

Tests/Results: None

Appointments: 07/11/2011 8:30 AM with NP to start Gilenya

In general, I feel “normal.” Most of the things going on have been constant for some time. The eye pain started nearly 3 weeks ago and was checked by Dr. C. She thinks it will resolve in time, I disagree. The visual presence is similar to what happens after you stare at a bright light or light bulb then look away. It started last Wednesday night and has not gone away. I will speak to the NP while in the office today and ask her if there is any cause for concern.


  1. I started Gelenya on December 19th. The very first 6 hour observation ended with me waking up in the ER with a heart rate of 34. The hospital wanted to keep me overnight for observation. As luck would have it my heart rate went up to 57 just in time for the nurse to tell the doctor and get me discharged. As soon as he saw it I unplugged the monitor and I was out of there.
    My heart rate is still in the 40's and 50's.
    Anyway 2 days later I had to go back to the ER with blood red eyes and terrible eye pain, oh and the horrible headaches. Not 1 person including my Neurologists assitant have ever heard of Gelenya. Needless to say they had to call poison control to find out about it.
    I have been back twice with severe eye pain and headaches. The hospital told me it has nothing to do with Gelenya and sent me home. I just got back again tonight with the same thing. Severe eye pain when i look to one side or another which in turn makes my head pound. Once again they say it has nothing to with the drug. Bull... I have had MS for 17 years and have never had this before. I am curious to see how many others are in my situation. Honestly, I would rather be blind than go through one more day of pain and suffering.
    Signed, Scared in Arizona.

  2. Any information would be great.
    Thanks again,

  3. Hi Sue, thank you for your comment. I just created a post just for you. I hope this helps!