Tecfidera - first pill

I’m starting this blog to track my experience taking Tecfidera as a long term MS disease modifying drug. My expectations are far from a cure as there are none to this date, I’m just trying to put the odds on my side to delay the progression of the sickness. Maybe delay enough, until something better comes up.

If you’re reading this, I don’t expect you to use it to determine what’s going to happen in your case. It’s a very small sample, i.e. one person, much too small to draw from it any conclusions. I've read many official information online, either the MS societies of Canada, UK and US, and also the information from Biogen. I also have read some of the many forum discussions, but knowing that can lead me to wrong impressions. Not only is what you read on the forums single experiences (a bigger sampling that just one, but still not very big), but also the data is strongly biased. I assume that you are much more likely to post on a forum if you have problems than if your issues are nonexistent or benign.

At least, this blog even though it’s a very small sample, thus not anything to base yourself on, I’m hoping it is not bias as I’m starting it before any symptom occur.

Here we go: day 1

Today I took my first Tecfidera pill. This is also my first DMD, disease modifying drug, for MS. My neurologist prescribed the suggested dosage, that is 120 mg, twice a day for the first week. The subsequent weeks, I double the dose.

So it’s been just over four hours since I took the first pill, a bit nervous because of the side effects. My Biogen nurse told me that she never had a patient that did not have side effects. However, they are often manageable and taper with time. Also, she advised me, to take it with a meal. Although this is not “required”, taking it with a meal, or at worst, snack, can help alleviate some GI problems some people have. It doesn’t hurt, anyways.

So it’s been four hours, it’s obviously much too early to claim victory, but I have no side effects so far. Reading some forums and blogs of people having side effects, some experience the first ones a few days after they start or when they double the dose, or a few days after that, on a regular basis or randomly. So, at least, one piece of information these forums give me is that, just like the disease itself, the reaction to the drug varies a lot from person to person.

So I took my first dose with my regular breakfast, cereal, soy milk and blueberries. But I had some Greek yogurt as well. Some say that a bit of protein helps. I’m thinking of starting to take some yogurt with active cultures to help prevent any GI issues. Oh and I almost forgot, as suggested by my nurse, I took a low dose aspirin 30 minutes before breakfast and the Tecfidera. This is supposed to help with the flushing. I'm wondering about the benefits of the aspirin. It could help with the flushing, but from what I remember, aspirin is not great to the digestive system. Maybe it's alright because the pills are coated and low dose, I'll have to check.

I’ll try to take the evening dose, around 8 pm, after my running workout, which is 12 hours later.

A couple of notes on actually getting the medication and insurance approval

Things have been quite surprisingly very straightforward and fast. Two Fridays ago, my neurologist faxed the insurance approval form to my insurance company (Tecfidera is marked as requiring special approval). He also faxed a form to Biogen, to start the process. Monday, I received a call from the nurse at Biogen who took her time explaining the medication. Tuesday, I received the approval from the insurance company. I call the nurse to tell her, and she informs me that the next step is to do an initial blood and urine test before starting the medication. She contacts the neurologist so that the exams are ordered. The neurologist was waiting for approval before ordering them, which he did. Thursday, I get my tests done. The nurse gets the OK from the doctor on Tuesday, the doctor was busy with ER and other stuff. I order the medication at the drugstore, Tuesday noon and pick it up Wednesday evening.

The first pack contains 56 pills of 120 mg. The pharmacist tells me that I can start taking two a day the first week and they move to four a day afterwards. I can’t move, the second week, to big 240 mg pills because the pills come in packs of 56. I just have to take two 120 mg pills instead of one.

The 56 pills of 120 mg were about 960$ Canadian. Luckily, insurance pays for 90% and when I reach 750$ out of my pocket they’re covered 100%. Even better, the Biogen nurse told me that Biogen can help patients financially to cover some of the costs that are not covered. After sending my family income statements, she tells me that they’ll chip in 50% of what I pay. That means, the whole treatment will cost me 375$ a year. This is not bad considering that one 240 mg pill costs around 35$. Yikes, that’s 70$ a day, 7 days a week! What’s sad is that this is probably more than the full time cashier at the drugstore makes.

Good thing for public health care and the insurance coverage: MS will have cost me only 375$ a year, for drugs, scans, MRI, doctors, etc. Even if I didn't have private insurance, it would be around that through public health care. I never thought I would be on the receiving end that early, but it helps in that it confirms that the taxes we pay are a pretty good safety net when we're not at the lucky end.

Why Tecfidera?

As I said earlier, this is my first long term drug for MS. My neurologist, which I like a lot, told me to go to the Canadian MS Society and read about the different available treatments and choose one. From reading the side effects of each treatment and their effectiveness, Tecfidera seemed like my best option. The side effects are usually manageable, the administration was oral which is practical, there are no scary risks such as PML, etc. Regarding effectiveness, two studies say Tecfidera reduces the number of episodes to about 50% of placebo and reduces brain lesion and disability progression significantly. Statistically, this brings my next episode to four years from now. But there is a very big variance between each person. Now let's see how this plays for me. And if I can't handle the side effects, I'm in a lucky position, there are other options.