what-its-like-taking-tecfidera

What It’s Like: Taking Tecfidera

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. 

The Medication

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.

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2019-a-reflection

2019: A Reflection

For the past two years, I’ve written a reflection for the last post of the year. Read 2017 here and 2018 here.


2019 was the year of the crucible. I underwent a lot of “lessons” in life; some brought on via self-reflection and others brought on by the natural flow of life. I learned a lot about myself, my capabilities, and where I see myself going in the future. In the three years, I’ve done these posts, it was the most challenging year emotionally, but the easiest year relating to my MS.

The Down Points

  • From October to December, I encountered some of the most challenging months in my adult life. These months rivaled my diagnosis with all the emotional upheaval. I lost Lytton in November, one of my forms of emotional support, while dealing with other challenges at the time. It felt piled on.
  • I continued to do a lot of heavy self-reflection, particularly with my role in my relationships and anger. The self-reflection often left me drained, but I am getting better at managing both. 
  • While I am getting better with my time management, I still struggle to get ahead on my work and stay ahead. With the past few months of upheaval, I’ve fallen drastically behind on several projects. I am struggling to get back into the swing of things. Additionally, I am grappling with being kind to myself because of this lag. I am seeing missed time as time wasted.
  • I am fighting against a victim mentality that crops up when experiencing a downcycle. My cat passed, I am falling behind, I am struggling to achieve goals, etc. – all played into previous internal tapes of “woe was me.” I have moments where I curl up in bed with a book or my phone to escape, but I try to set myself a timer to break out of it and be productive again, even if it’s with one task.
  • This last one needs to be at the end because it straddles a down point and positive point: getting back on my medicationThe down aspects of getting back on Tecfidera: it definitively means Ash and I are stopping with Jai for children, it’s a physical acknowledgment of my MS, and the pain I am about to undergo with the first month of side effects. 

The Positive Points

  • I decided to re-start my medication because I knew it was the right thing to do for my health. By re-starting Tecfidera, I am creating a more significant buffer between my well-being and my MS. It is an insurance policy to help me manage my MS when I have another downcycle of stress/emotional change. It’s also a physical acknowledgment, to myself, that my health is worth it.
  • I rediscovered my love of reading this year. It’s been over ten years since I sat down and read a book for pleasure. While in graduate school, I was afraid of wasting time on pleasure books when I could be doing research. I also found that graduate school temporarily blocked my love of reading because of all the heavy lifting I did. But I vowed to read more for the blog, so I started with audiobooks and graduated back into the physical medium. As I started getting into depths of the emotional upheaval that was this fall, I read more to escape. I found reading to be a soothing distraction, educational at times, and it also sets an excellent example for Jai. I plan to continue to read more in the coming year.
  • While my time-management was less than ideal, I learned that the more organized I am, the more satisfied I feel. I also found that I am less stressed if I have a flexible plan in place. I am less likely to put things off, though I still have my moments of procrastination. If anything, I learned that I am one of those people who benefit from structure, minimalism, and organization.
  • Last year I contemplated the role toxic friendships played in my life while feeling frustrated that a lot of my relationships had harmful elements. I recognized I stacked my friendship cards against me by rejecting or minimally pursuing positive relationships in my life. This year, I opened myself up to new relationships while maintaining my sense of self, something I hadn’t done before. Because of it, current friendships grew more profound, and I made a bunch of new friends along the way. 
  • My running took off this year. I ran in three different states (Florida, Nevada, and Wisconsin), and even PR’d on a half marathon, almost making it below two hours. I officially decided that I would begin the process of qualifying for the Boston Marathon. While I have a long way to go (like running a marathon in the first place), it’s a goal I’ve created for myself to see what I can achieve. I think my running has helped me manage my MS and my emotional well-being, along with getting me in a healthier space.
  • While it hasn’t been my most traveled year, I did get around the country quite a bit for 2019. I traveled to Florida for a Walt Disney World running weekend in January; I went to Las Vegas for my best friend’s birthday in March; and to Wisconsin twice (July & November) to visit with my in-laws. It was a year filled with a lot of new experiences, which I enjoyed very much.
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Love & MS

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


We don’t get to choose whether or not we get MS, nor do we get to decide when we get that diagnosis. For some, it comes while in a relationship, and for others, it happens outside of one.

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis my partner with me because they feel obligated? Do they resent having to care for me? Are they only interested in me because they have to “fix” me? What happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home). They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. In addition to maintaining a relationship, I am trying to learn my limitations. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things, and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

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Checking In: MS Symptoms

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.


What good is discussing diet and lifestyle changes if I don’t reveal the ongoing results?

Doing an honest self-assessment of any sort is hard, particularly when trying to find ways to manage an unmanageable disease. There’s a huge desire to make everything a “success” or engage in placebo effect-like thinking, but that isn’t always the case.

Overall, I feel like I am managing my MS better. Still, on a day-to-day basis, my mileage may vary because of various external factors.

Current Health Self-Check

Currently, I am not doing so well. Not necessarily because of the MS, but I have a weird seasonal head cold. Drippy nose, sore throat, and exhaustion. I can only assume that if a person without MS gets a virus like this, they may feel wiped out but can go about their daily lives with minimal interference.

With MS and any illness, I get so wiped out that getting out of bed is a hardship. Ash had to stay home until Jai went down for his morning nap on Tuesday because I was so worn out. I needed the extra couple of hours of sleep. This afforded me before I was able to start the day and take care of a toddler. Jai and I stayed in our PJs and read lots of books and minimized movement so I wouldn’t overdo it.

This is a crucial example of why getting sick with MS is “dangerous.” It won’t necessarily cause any physical harm. Still, infections are a significant cause of flare-ups, so there is a risk of needing to get steroids to treat the inflammation. I don’t get avoidant if I know someone is sick. Still, I do recognize that even a simple cold can knock me off my feet for a couple of days that might just inconvenience someone else.

I usually wouldn’t write about getting sick factoring into how I am currently feeling because I tend not to get sick all that often. Still, since having Jai, it has become a more common occurrence. 

Beyond the cold, I am feeling okay overall. There’s been some emotional disappointment in not being able to maintain my diet as strictly as I wanted. I am doing what is best for my overall health, and that is more important. My brain fog and memory issues haven’t lessened, but that may be because I am not doing enough mental exercises to help stimulate neuron repair.

Fatigue is still an issue, but not so much on the days that I am more active. I find high-cardio days mean that I have more energy throughout the day. On the days I only do yoga, there might be a more significant dip in energy by the afternoon.

Being completely honest: I haven’t noticed many changes since my last check-in after my diet reset. I feel more active, happier, less sluggish, but no apparent changes to my MS symptoms.

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Running and Neurology

Running Down a Half Marathon

Since August, I have been training for a half marathon.

I have been so focused on shifting my diet, that I haven’t talked about this training in my blogging because there hasn’t been anything to report. I got the idea in my head back in July after meeting with a health coach through our insurance company. She suggested that I come up with an exercise goal as a means of getting healthier in the long term. Before getting pregnant with Jai I used to run, and I made sure to get a running stroller so I could eventually get back into it while pushing him around.

And by run, I use the term extremely liberally. I am more of a jogger, and with my short legs you could make the argument that I am a fast walker. I get my heart rate up and that’s all that matters to the experts.

Regardless of my personal speed, I had done a half marathon before my diagnosis and knew that it would be the perfect goal to push for intense training. It wasn’t long after I settled on a half marathon at the end of October that I received the good news about my MRI and made the decision to alter my eating habits as well.

It was one of those moments where everything came together and it made the health coach even happier to hear that I was exercising AND eating better.

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