Tecfidera has been a breeze. Just pop a pill twice a day and no needles. I didn’t have any side effects so it has been especially easy for me.
The only problem is that during the ten months that I was on Tec, my disability steadily got worse. My doctor said that in cases like this, we usually have to take something that tamps down the immune system more strongly. With luck, that may help to slow down the progression.
Tysabri would be an obvious option except that I am JCV+, making it risky for me. Doc said that our next best choice was Gilenya. She said that while it is still a little unclear where Tecfidera falls on the efficacy spectrum, it seems like it is closer to down by the interferons. Whereas, Gilenya seems to be closer to Tysabri. She has a number of patients that are in worse shape than I am, that are getting very good results on it.
And it’s a once-a-day pill so no needles. Sign me up.
To start Gilenya, you need to go through a battery of tests to see if you can take it. But if you pass, it is easy to take with few side effects. The battery included blood tests, a pulmonary exam, opthalmological exam, EKG and a dermatologist exam. I’m probably forgetting something else in there.
When you take your first dose you have to be in a clinic where they can observe you for six hours. The drug can cause your heart rate to drop, particularly after the first dose and they want to make sure that your body adjusts and starts to recover from it before they release you. From doses two and on, you should be all set to take on your own.
Gilenya can also cause macular edema, hence the ophthalmological exam to establish a baseline before taking the drug. If a patient develops this, it will normally occur within four months.
Gilenya works by trapping a type of white blood cells called lymphocytes in your lymph nodes. The idea being that if they are trapped there, they can’t swim around munching on your myelin. Unfortunately, that also means that they are not out there battling viruses either, making you more susceptible to serious infections.
I passed my exams and we went for it. More to come as I will provide an update on the first month in an additional post.