Tecfidera, I’m not sniffing goodbye

For the last two years I’ve taken a Disease Modifying Drug (DMD) called Tecfidera, a pill that you take twice a day. As I’ve mentioned before, DMDs hope to reduce the rate that you have relapses.
I think Tecfidera has worked well reducing relapses, but there’s two things that I am not missing, and they are covered by this photo:

Every day for two years I flushed! The pink sink doesn’t really do it justice. I was red twice a day. Once or twice a week it was like intense sunburn and it hurt! There are suggestions for how to manage it, but nothing worked.

I also had a runny nose and sneezing fits for two years. I knew that it could be the Tecfidera, but I didn’t really think about it too much. I know others had had the same thing. Every jacket and bag I use have a stash of tissues and honey and lemon throat sweets! Bedside, living room, car, boxes of tissues everywhere.

And I won’t go into the gastrointestinal ones. Use your imagination.

I stopped taking Tecfidera last Thursday. Since then, I have not flushed once, which I expected. What I didn’t expect, however, was I have blown my nose once in a week and haven’t sneezed at all! It’s gone! And immediately! Kleenex are going to wonder why their sales in Western Canada have dropped so dramatically!

There is a serious point to all this. DMDs do an important job, but it’s sort of invisible. How can you tell if it slowed the rate of relapses you were going to have, if you don’t know if you were going to have one?!? How can you measure something that might happen – or might not?!?

Instead, you get these annoying side effects. Every DMD I’ve taken has them. I call them the paper cuts of MS as they’re just annoying. For me, they’re certainly not as bad as my other symptoms – flushing compared to not walking, for example – but they gnaw away at your quality of life. And these aren’t even the reasons I stopped taking this one! I stopped because my lymphocytes were dropping and I was getting more infections! Serious stuff!

These annoying side effects (and of course the serious ones) are the reason a lot of people stop taking their DMDs. They weigh up day to day quality of life with a hoped for long term outcome that it’s hard to see. They cash in the insurance policy, because they don’t believe in what they’re being sold. I can see both sides of the argument, but for me, taking the DMD is something I choose to do.

Next stop in a couple of months, Aubagio. It seems I might lose some hair. Whatever.



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