For January 2020, I committed myself to get back onto MS Disease-Modifying Therapy (DMT) or Disease-Modifying Drugs (DMD). My rationale is that while I am managing my MS well without medication, any DMT provides an insurance policy against disease progression. My healthy living changes were always with the end goal to work as a complement to my DMT. And as a blogger, I wanted to share what it’s like taking Tecfidera as a DMT.
Part of the reason why it was so quiet in January is because I focused on getting onto Tecfidera, managing my self-care, and my regular mother duties.
What follows is a brief introduction to Tecfidera, my experience getting back on it, a comparison to when I first took Tecfidera in December 2014, and my final thoughts on the whole experience.
As per my medical disclaimer, I am not a medical professional, so please take what follows as my personal experience and anecdotal, not scientific fact. If you are on Tecfidera or consider taking Tecfidera, you may find your experience varies from mine.
There is information on the website about Tecfidera, so if you are thinking about taking it for your MS, I recommend going directly to the source for your research. I wanted to highlight information that related to my experience.
Tecfidera is a DMT that is believed to “modulate the immune response to be less inflammatory and […] could be protective against damage to the brain and spinal cord.” It helps keep your body from inflammation, a common problem with MS exacerbations. Biogen isn’t able to pinpoint what about the drug works, just that it helps reduce the occurrence of exacerbations. In a 2-year study, 27% of the people on Tecfidera found their exacerbation cut by 47% (compared to a placebo).
Note: Biogen only links to two two-year studies.
Some of the known side effects include flushing and stomach pain, usually within the first month of starting the therapy. Flushing can occur anywhere but typically face, chest, and hands. Stomach pain can range from mild discomfort to physical distress. Both of these side effects decrease the longer you take the medication. After a month, the stomach pains typically end, and within several months, the flushing stops.
Tecfidera is also known to bring on Progressive Multifocal Leukoencephalopathy (PML), a disease that attacks your brain and leads to death if not treated. The JC Virus causes PML. Most adults carry the dormant JC Virus with no ill effects, but taking Tecfidera is known to reactivate the JC Virus. Unfortunately, three MS medications do this. Fortunately, getting PML is rare.
To combat this, Biogen recommends getting frequent blood tests to check for JC Virus antibodies. If you reach a specific number of antibodies in your blood, then there’s a chance you have PML and should stop your DMT immediately. If your prescribing doctor does not recommend regular blood tests, please ask for them.
There are more side effects, warnings, and suggestions related to Tecfidera, so I recommend you check that out here.
Biogen provides patients with a tapering pack when you begin the therapy. This pack includes fourteen 120-mg pills: take one 120-mg pill twice a day for seven days. It also consists of a container with 240-mg pills, which is the normal dosage: you take one 240-mg pill twice a day for the rest of the month.
Having taken Tecfidera before, I had an idea of what to expect during the first month of tapering up to my full daily dosage. Back in November 2019, I went into my neurologist appointment with a plan of how I would taper onto the medication to minimize the adverse side effects.
My neurologist gave me a 30-day supply of prescription-grade Prilosec to help reduce my stomach acid. By taking the acid-reducer, when the Tecfidera digested in my stomach, it would minimize the stomach pains I previously experienced. We then discussed the tapering process: they prescribed a slow tapering which did not follow Biogen’s recommendation.
The next step was to coordinate with Ash and my mother on how we would handle the side effects. A significant concern of mine was the incapacitating nature of the reflux. I did not want Jai to see me in pain, and I wanted someone to be there to take care of him in case I was in too much pain. Ash and my mom divided up the week: mom would take the first half of the week to be home with me during the day, and Ash would take the second half of the week.
The final step was, but never actually happened, to plan GERD meals for me. Anything to reduce the occurrence of stomach acid while I got used to the medication. I found that this step was unnecessary once I started taking the medication, but my intentions were good.
As I drew closer to the start date, I fielded calls from Biogen pharmacists, Biogen nurses, my specialty pharmacy pharmacists, and their nurses. It was somewhat redundant, especially after answering the same question twice in as many hours to two different groups.
I did get useful advice on how to take the medication: eat a few bites of something fatty (not recommended on GERD diets), take the pill, eat some more, and keep something on my stomach.
January 1st, 2020, the day I started Tecfidera. New year, new me sort of thing. It also left the holiday eating behind, so I was able to enjoy the special meals without worrying about the stomach pains. Following the advice of the nurses, I ate peanut butter for my morning dose, around 8 am.
It went well. Until I ate an early lunch around 11:30 am. Within twenty minutes of finishing my leftover pasta, my face turned hot and beet red. My hands started to itch. I took my face temperature using an infrared thermometer, and I topped out at 103°F.
I did not have a temperature, but my skin was on fire. It took about thirty minutes for the flushing and itching to go away. That was the worst flushing episode I had in the whole process. When I flushed later in January, it was much milder and went away within minutes. While expected, it still freaked me out at the suddenness.
Additionally, I messed up my tapering process on day one. The plan I created with my neurologist was to take one 120-mg dose a day until it was time to bump up to the full 240-mg doses twice a day as a way to ease into the process. I ended up taking two 120-mg: one in the morning and one in the evening.
Whoops! I was following Biogen’s directions, not my plan with the neurologist.
The next day I took one 120-mg dose and developed a better dosing plan for myself. I do not recommend this, because legally, I can’t, but I found that I tapered onto the full dosage with minimal disruption and within the prescribed time frame.
- Week one: one 120-mg pill once a day (in the morning)
- Week two: days one and two, one 120-mg pill twice a day (morning and evening). Days three through six, one 120-mg pill in the morning and one 240-mg in the evening. Day seven, one 240-mg pill in the morning and the evening.
- Week three: Begin recommended 240-mg regimen twice a day.
Again, I cannot recommend going against your doctor or Biogen’s recommendations. I even got “in trouble” with one of the Biogen nurses when I told them what I did.
The rest of January was unremarkable regarding the expected side-effects. I had several bouts of stomach discomfort, but I found it was mostly tolerable. Each time I experienced stomach pain, it was because I didn’t eat enough before taking my morning dose. I also did not keep something in my stomach until lunchtime. When I planned out my snacks and breakfast, I was fine.
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Researching for this blog post, I found no official information about some side-effects I experienced. I even spoke with the Biogen and my specialty pharmacy nurses about them with no avail: the official line is that these side-effects are not happening. I only get flushing and stomach discomfort.
But they are. It took finding other MS bloggers to get validation for my symptoms.
Some of the “unacknowledged” side-effects included insomnia, trouble running, trouble with grip, and general anxiety. I assumed that insomnia was the source of the other three symptoms. If I am not sleeping well, my recovery after runs is poor, and my grip is weak due to being tired. Anxiety follows because of the lack of sleep, but also the anticipation of stomach pain/flushing.
First, I think the insomnia is from the inactive ingredients. I find that I am sensitive to dyes, and Tecfidera comes in a bright green casing. It may be some other binding ingredient, and I do not know what it would be. The insomnia is getting better as the months go on, so I am getting used to whatever it is. For the record, my insomnia is trouble falling asleep and staying asleep. According to my Fitbit, I was a very light sleeper throughout January.
Next, I found that as I tapered up, my running abilities drastically decreased. Easy routes were increasingly difficult. I could no longer run longer than six miles without feeling discouraged. My legs felt sluggish, and I had a bad run after a bad run. The rest of my body felt fine; it was just my legs that stopped working the way I needed during a run.
Because my marathon training stalled, I had to switch my first planned marathon in March down to a half marathon. I still have a marathon in November planned. I cried when I finally admitted to myself and my running partners that I had to switch races. My plans for Boston stalled, and I was devastated. I think my grip issues were related to whatever caused my legs to become sluggish.
Finally, I don’t think my anxiety had anything to do with the Tecfidera, active ingredients, or not. I think it came from a place of anticipating public flushing/stomach pains, and it not happening. I was on pins and needles waiting for something to happen after each lunch I ate. When it didn’t happen, I figured that today wasn’t the day, but tomorrow. Tomorrow it would happen. I likened it to mental torture in one conversation. Just waiting for that painful shoe to drop and not happen. Once we entered February, I felt like I could relax.
Then I found this blog post from 2015. While I don’t necessarily agree with the “Big Pharma” conspiracy, the writer described the same symptoms with sluggish limbs. They also found their mobility reduced while taking Tecfidera, and found others who had the same complaints. In this earlier blog, the writer chronicles all their symptoms while on Tecfidera. It didn’t go well for them.
What I have found is that Biogen floods the front pages of internet searches regarding Tecfidera. Trying to find real-life experiences with Tecfidera not affiliated with Biogen or their MS support page is challenging. Finding realistic and honest experiences with Tecfidera is difficult.
I am hoping to add my two-cents to the discussion with this post. If you are experiencing new symptoms since starting Tecfidera that aren’t related to the flushing/stomach issues, you are probably not imagining it. As I said above, Biogen only has two studies about Tecfidera, and this is not enough to officially brush aside all the other possible symptoms you can experience. Yet, they do.
This blog also courts conspiracy, but they bring up valid points. MS drugs are pushed out to market sooner than they should and minimize side effects to get FDA approval. Biogen recently won a patent suit to prevent a generic coming out before 2028. Please note that Tecfidera generated $4.4 billion in revenue for 2019.
I bring all of this up because there’s a chance Tefidera patients aren’t getting the full story about their side effects. I am not going to delve into a conspiracy, but I recommend that patients contemplating Tecfidera do so with the knowledge there may be “unofficial” side effects. Speaking with the Biogen nurses, which is part of getting onto the therapy, will provide you with little to no answers.
Instead, please speak with your prescribing doctor and document everything with them. Decide then if these side-effects are worth dealing with or if you need to consider a different DMT.
In the interest of full transparency, I want to acknowledge that I had two different tapering experiences with Tecfidera. I feel like this provides a unique perspective on taking this DMT.
When I started Tecfidera in December 2014, I experienced extreme stomach distress. It was so bad that it sent me to the ER twice because I didn’t understand what was happening. It wasn’t until I started taking Prilosec that I got the stomach pain under control until my body adjusted to the medication.
In January 2020, I found that every time I experienced stomach discomfort, it wasn’t at the same level of pain. I may have reached a 5 in distress once or twice, but it didn’t last more than an hour or so. In 2014, it lasted hours and felt like someone was stabbing me.
The flushing does not feel as bad this time either: in 2014/2015, it felt like a regular occurrence, especially when I was stressed out. I can count on one hand how many times I experienced the flushing in 2020.
I can only speculate why each experience was so different, and I believe it comes down to how I am taking care of myself now. Because I am eating healthier, managing my stress, and exercising frequently, my body is handling the DMT better. In 2014/2015, I was not taking care of myself. I was at least thirty pounds overweight and in a high-stress job.
Understand that you may not be able to be in the same position I am in before starting Tecfidera. And if you are, your tapering experience will differ from mine. Everyone is different; therefore, everyone reacts differently. You may not be healthy and have a similar experience to my 2020 one. You may be healthy and have a similar experience to my 2014/2015 one.
What I can recommend you do is make a plan with your doctor on how you approach your tapering process with Tecfidera.
I am not sure where I stand with continuing Tecfidera as my primary DMT. While I am almost two months in, and that is too soon to determine any difference, I do feel the “cure” is worse than the disease in my situation.
I gave up my dream of running a marathon in March because of it. I had to adjust my life around taking the medication, even after getting used to it. I don’t feel like it’s preventing exacerbations, but then I’ve gone since July 2017 without a major one. It’s reigniting symptoms similar to exacerbations, with muscle weakness.
I plan on continuing to take it until my Neurology appointment in April, where I will discuss with my neurologist my options for other DMT. If Tecfidera takes away my ability to run the way I want and running has been my form of DMT, then I need to look for alternatives.
Therefore, I do not anticipate continuing Tecfidera beyond April 2020 because I do not feel like it is working for me. But we shall see.
Here are some final thoughts regarding my experience with Tecfidera. I am craving Kombucha like it’s better than water. I think this has everything to do with the Prilosec destroying my gut bacteria while I coped with the reflux. My body is trying to recoup some beneficial probiotics.
Do not, I repeat, do not use the “TecTrack” app Biogen pushes on you. It’s a terrible way to track taking your medication. There are so many better reminder apps available to you, along with ones to track all your symptoms. TecTrack only lets you follow your flushing/stomach pain symptoms and then spits out all the medical information about Tecfidera that is annoying the first time. You have no way to go in and look at how frequently you are experiencing your symptoms. It also has a faulty stats system to see how well you stay on track with your medication. I never missed a dose, yet it said I was at 92% for staying on track. I looked for the “missed dose,” and there wasn’t one. It’s needlessly stressful.
Finally, tapering onto Tecfidera would not have been possible without the support of my parents, Ash, and my friends. My mom went above and beyond by coming over to stay with Jai while I worried, needlessly, over my stomach pain. She played with him, kept him entertained, and took care of me when I did have a moment. For that, I am eternally grateful.
Ash took time off from work (thank you FMLA) to care for me throughout January as well. Paid leave is precious, so it means a lot that he was willing to use it for me.
We’ll see where the next few months take me with the Tecfidera, so expect an update at the end of April, beginning of May. Leave a question or comment about your experience with Tecfidera or any DMT. While I might not be an expert, I do want to share in your experience.
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