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.
