Diary Of A Gilenya Pioneer: First Month On Gilenya

First Month On Gilenya

My first month on Gilenya has passed.

As a treatment, everything with Gilenya has been going well. Downsides are that I’m a bit drowsy sometimes and a bit cold (both seem so random). Sleep is very difficult. My skin is definitely more sensitive than usual, especially to sunlight which I didn’t think was possible.

Gilenya is rumored to possibly heal previous damage from MS attacks. For my part, I have no idea if Gilenya is healing any damage considering how badly I react to heat and this summer has been brutal.

In approximately 3 months I will have more information about whether or not the drug is affecting my eyes or my liver. Right now I’m chalking up random bruises to our cats going crazy at night and smacking me awake with bags of treats.

Yesterday I learned that acknowledging that my heart rate lowered during my first dose in my followup phone call was construed as lodging a complaint and required me to go in and pay for a completely unnecessary neurology appointment to fill out the “complaint” paperwork (2 pages of a handful of questions answered by the neurologist).

I’m happy on the drug but having to use my weekday weekend (I worked Sunday) to go to my neurologist and pay for a visit to fill out unnecessary paperwork following a completely misconstrued phone call is unacceptable on all sides. Not the least of which is that a lowered heart rate is expected – hence having to be monitored for your first dose(s) in a doctor’s office.

My neurologist was livid with me and actually said to me “When they call you just keep your mouth shut!” Following this was a diatribe about how he refused to fill out paperwork unless he was paid for it and that’s why they made me come in rather than just calling me.  I’m compelled to acknowledge that my trust in my doctor was significantly chipped away today after he was so unprofessional with me. The truth is, having management of this disease in the hands of someone I feel I can’t trust has left me demoralized. His staff apologized to me when I checked out and called him a “drama doctor.”

Lesson learned – never bother explaining symptoms to a pharmaceutical company, or to my doctor who thinks I’m an over-reporter. The truth is, and I assume this is true for most MS patients, that for every symptom I divulge there are at least 10 others that I keep to myself. I won’t think of myself as an over-reporter until I buy stock in ink and paper then keep a log of it all. I only report the significantly painful symptoms or when I develop muscle weakness or paralysis as a result of an exacerbation. How inconvenient of me.

Are you hesitant to discuss some side effects with your doctors? Have your doctors ever behaved unprofessionally toward you?

2 thoughts on “Diary Of A Gilenya Pioneer: First Month On Gilenya

  1. Pingback: Switching Neurologists – Dumping Doctors And How To Find A New Neurologist | Diagnosis MS

  2. Pingback: Gilenya & Ocrevus | Diagnosis MS

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