My own experience on Tecfidera
Start Date: June 12, 2013
Dose: 240 mg 1x day for 7 days then 240 mg 2x day*
Specialty Pharmacy: Wallgreens for starter pack (1st month) only, Curascript on-going**
*since becoming so sick after after three weeks on the full dose I’ve only been taking a half dose (I pill at night) and most side effects have subsided (as long as I follow the ‘rules’)
**I had a terrible time of getting my first one month supply after going through the starter pack. My insurance company (Harvard Pilgrim) rejected the refill request from Wallgreens and insisted I go through Curascript (the pharmacy that had been providing my Copaxone.) I waited too long to start the refill process with Wallgreens (8 pills left) and Curascript demonstrated every example of how broken and and infuriating our health care system is, dragging the process out for over a week and forcing me to cut back to the half dose of Tecfidera in an attempt to not run out completely. After approximately 30 phone calls, 4 hours on hold, and two unfulfilled delivery dates I finally received my next 30 day supply of Tecfidera from Curascript on a Friday, 8 days after I called Wallgreens for a refill and with zero pills left.
Side Effect- Flushing: First two weeks experienced minor flushing about 75% of the time and severe flushing only once. Severe flushing looked and felt like an awful sunburn on the whole upper half of my body and lasted about 45 minutes. minor flushing was not even unpleasant, mostly affecting my ears and cheeks.
Side Effect- Gastrointestinal: The third and fourth weeks major gastrointestinal symptoms began, including vomiting, nausea, diarrhea, stomach cramps and acid indigestion. These symptoms were severe enough that I first assumed I had a stomach virus, until I saw a direct link between when I took Tecfidera, how much and what I had eaten, and when and if I woke up in the night vomiting.
Side Effect- Gastrointestinal- Resolution: [Still experiencing these symptoms intermittently, but these things have all helped manage them] Eliminated foods from diet that may have an adverse reaction in my body or be hard on my digestion (gluten, dairy salicylates and corn are the big ones for me) Taking it after a large meal of substantial food (rice crackers carrots and hummus did not cut it for example- I got really sick that night) Taking it at least an hour before lying down (going to sleep, or just lying down right after taking it seems to make my stomach incredibly upset and greatly increases the chance of vomiting) I also have to watch the acidity of the foods I’m eating. With the tecfidera in my system my stomach feels more acidic all the time and I’m prone to heartburn. Avoiding acidic foods helps, especially on an empty stomach. For example a swig of orange juice upon waking now makes my stomach churn.
If you or someone you love is taking Tecfidera comment with your experiences! We’re all in this together, lets help each other face the scary unknown by making it less scary and less unknown!