Tecfidera (dimethyl fumarate)

I am currently on my fourth treatment for MS (about to move onto my fifth!) so I consider myself a bit of an anecdotal expert on MS medications. I thought I’d put together a post on each drug I’ve tried and my experiences. Like having MS doesn’t mean I’m abnormal enough – my body keeps rejecting each treatment and I’ve ended up with several really nasty side effects, some of them so rare that they aren’t even listed on each drug PDS. As one of my doctors said, “I’m the statistic nobody wants to be.” Which, you know, is a really comforting thing to hear when you’re in the middle of a life-threatening reaction and are convinced you’re about to die.

A disclaimer – I realise that this series of posts on medication are quite negative. In no way, shape or form am I advocating to pursue life post-diagnosis without treatment unless that is advised by a neurologist. How anyone decides to live with MS is their own extremely personal choice, however I will always take the advice of my medical team and will never consider not being medicated unless that is ultimately their recommendation.
TECFIDERA
Sitting in my neurologist’s office sobbing after hearing my MS diagnosis for the first time, my doctor was quick to point out that there are treatment options available, and that they’re pretty good. Growing up alongside advertising showing desolate, hopeless MS patients and having never considered that they could be aided by medication, the idea of treatment was a slight but short-lived reprieve. My neurologist and new MS nurse were compassionate and understanding but the diagnosis was nevertheless overwhelming and the medication choice confronting.
“You don’t need to choose immediately, it’s not urgent,” my neuro let me know. “But it’s better to start sooner rather than later. There’s a whole range of medication you can choose from. Tablets, injections, infusions -“
“- Stop!” I interrupted, “I won’t take anything but tablets.” My needle-phobic self didn’t need to think twice.
I was handed pamphlets for Tecfidera, Gilenya and Aubagio, but was told Aubagio as a category X drug during pregnancy is unsuitable for women of child-bearing age. While I ignored the entire situation for a month or so after diagnosis, I eventually decided on Tecfidera as it seemed to have a better safety profile than Gilenya (you know, only suppressed immunity and fatal brain infections, just the reg stuff 😳). My MS nurse called me to go through the instructions and let me know what to do in case of side effects. It all sounded pretty easy. I filled my prescription and started just like that.
Tecfidera half and full dose

As Tecfidera has a number of side effects, to help your body tolerate it you start on a half-dose for a week before moving onto the 240mg capsule. I was most apprehensive of the flushing my doctor had warned me about, I worried it would be awfully embarrassing to randomly turn bright red and itchy hot either at uni or at work. In hindsight this is laughable. How I now yearn for a side effect so mundane! Whilst I did have random bouts of flushing in the first week, besides that I was unaffected and successfully progressed to the full dose.

I didn’t think much of it when I started getting tummy cramps and lost my appetite – I’d always had a sensitive stomach so put it down to having eaten something that hadn’t agreed with me. Over the next few days my abdominal pain got increasingly worse but Buscopan did the trick. It wasn’t until that weekend when I went to a party (and did get admittedly quite boozed) that I realised something was wrong when I woke up the next day and felt not figuratively but literally like I was dying. Between the heart palpitations, sweats, shaking body and nausea I couldn’t think of a time I had ever felt so awful. It took hours to let up, and just as I was beginning to feel slightly better, I took my evening Tecfidera capsule and it started all over again.

Over the next week I was able to put two and two together and realised it was the Tecfidera making me feel this way. Within half an hour of taking each capsule I would start vomiting uncontrollably and was chewing Buscopan like lollies to ease the abdominal pain. Whenever the vomiting fits began my body would turn to ice and with chattering teeth I would lie in bed in my pyjamas with layers of blankets and hot water bottles and nothing could heat me up.

I was completely incapacitated by Tecfidera and by this point I had taken nearly a month off uni and work. My MS nurse agreed that I was definitely experiencing side effects at the extreme end of the spectrum, and we decided that I would have a few weeks off to let my body recover, then we would try to wean me onto the drug slower than the first time. But even this did not work! I was taking a bunch of anti-nausea medication with every Tecfidera capsule and it wasn’t working, I was at my wit’s end.

Tecfidera side effects
Tecfidera side effects Source: healthline.com

It wasn’t until I was trawling MS forums out of desperation one day that I found the unlikely solution. I found several posts from MS patients around the world claiming they’d had success with Tecfidera by taking an enteric-coated Aspirin an hour before each capsule. I thought this sounded like rubbish, what was Aspirin going to do? But I had lost all hope by this point and thought I had nothing left to lose. And amazingly, on my very first trial no less, it worked! I took my Aspirin, then my Tecfidera, and went straight to bed nursing my stomach and waited for the deluge. You can imagine my shock when I woke up the next morning feeling completely normal, and realised I had taken Tecfidera without any trouble!

For anyone struggling with Tecfidera, below is the routine I used to successfully tolerate the drug:

Week 1

  • 1 hour before dinner: Take 300mg enteric-coated Aspirin
  • Dinner: Eat a substantial meal with protein and take 120mg Tecfidera

Week 2

  • 1 hour before breakfast and dinner: Take 300mg enteric-coated Aspirin
  • Breakfast and dinner: Eat a substantial meal with protein and take 120mg Tecfidera

Week 3

  • 1 hour before breakfast and dinner: Take 300mg enteric-coated Aspirin
  • Breakfast and dinner: Eat a substantial meal with protein and take 240mg Tecfidera

Week 4

  • 1 hour before breakfast and dinner: Take 200mg enteric-coated Aspirin
  • Breakfast and dinner: Eat a substantial meal with protein and take 240mg Tecfidera

Week 5

  • 1 hour before breakfast and dinner: Take 100mg enteric-coated Aspirin
  • Breakfast and dinner: Eat a substantial meal with protein and take 240mg Tecfidera

Week 6

  • Breakfast and dinner: Eat a substantial meal with protein and take 240mg Tecfidera

You’ll notice that I started taking 300mg of Aspirin with the half dose of Tecfidera once a day, then weaned onto the half dose twice a day, then onto the full dose, before slowly reducing the Aspirin until I could tolerate Tecfidera without it.

Unfortunately once I finally got to this stage and was taking Tecfidera with ease, my days were numbered. A routine blood test a few months later revealed that Tecfidera had brought my lymphocyte count dangerously low (the lowest my neuro had ever seen on a Tec patient!) and I was at risk of PML 😦 So my journey with Tecfidera ended disappointingly abruptly.

All of a sudden I found myself back at square 1, needing to pick a new medication…

5 thoughts on “Tecfidera (dimethyl fumarate)

  1. So sorry to hear of the horrible side effects you went though. I’m also on Tec (have been for 4 weeks) and so far I have been OK, but do have the tummy problems. Well done on finding the solution to help!

    Liked by 1 person

  2. So sorry😞 Really hope you find something that cure your MS💗
    Mabye stem-cell treatment?

    After 40 years with MS my mom is now at the final stage. Completely paralyzed from the neck down. I REALLY hate this disease😠

    Best wishes to you💗

    Like

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