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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Importance of Self-Improvement and Chronic Illness

Chronic Illness & the Importance of Self-Improvement

Why is it important to consider self-improvement if you have a chronic illness?

There’s no real easy answer because everyone’s situation is different. For some, every day is a chore to get out of bed and just manage the disease. The thought of making positive changes in life is a luxury.  Wrapping one’s head around life-changes can be overwhelming because life-changes implies big goals and grand changes.

But, what if I said it didn’t need to be? That perhaps we are all too focused on the implied definition of self-improvement rather than its actual definition? A definition that simply means making personal changes.

That’s what this year is about: acknowledging that taking the time to make minor changes in a positive direction is just as meaningful in the desire to self-improve as making the bigger ones.

Today, let’s reshape our definition of what is self-improvement into something more manageable. More meaningful and more personal.

Altering Our Impressions

In the Western world, self-improvement or self-help is heavily marketed to consumers. If you had a TV as a child, you’ve grown up knowing that around this time of year commercials promoting diets and weight-loss supplements increase.  Read magazines? Ads and articles abound about the various ways to improve your life.

Daily, there are subtle and not-so-subtle ways for the industry to pull you in and want to make changes so you can “live your best life.

Many of these offers come with the caveat: “you can only make these improvements if you buy x,y, z book.” Which leads to a near $10 billion industry.

Does that make self-help/self-improvement a scam? Not necessarily, but you have to be mindful of who you turn to for help. There are scammers that peddle modern-day snake oil and scientifically unsound therapies, but there are plenty of legitimate options to guide a user through the process.

That said, self-help is an industry. Therefore it’s in the industry’s best interest to keep consumers coming back month-after-month; year-after-year. If it feels like self-improvement goals always seem so big, i.e. “I want to lose 50 pounds in six months!” or “I am going to do something new and exciting every day this year!” that’s because there’s this nebulous goal-making process that does very little to encourage participants into smaller and more manageable goals.

There are some programs that encourage breaking goals down into more manageable chunks, but unfortunately, they aren’t as loud as a reality star on TV telling you to buy their product for massive weight-loss. Or the social media influencer who shows off how perfectly they are meeting their self-improvement goals.

If you have a chronic illness, seeing these examples can be extremely discouraging. If getting any form of exercise is a struggle due to mobility issues, watching someone on social media demonstrate “8 easy exercises to tighten that butt” is not appealing nor realistic. Sure, I might want a nice butt, but none of those exercises are doable.

Where might there be motivation to make any changes if your body is already working against you?

This is why looking for the more realistic programs is important. But, the realistic programs get lost in the social media cacophony which leads to the impression that only big changes can be made when we want to commit to self-improvement.

Goals do not need to be huge, they can be as small as taking one step-a-day, or eating 50 calories less, or even saying one positive affirmation to ourselves when we wake up. Goal creation is about starting the process towards self-improvement and allowing it to build on itself. Forward momentum will move you towards greater personal success as time goes by.

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Advocating for Your Health


I am not a medical professional and the information provided in this post is intended for your general knowledge only and is not a substitute for professional medical advice or treatment for specific medical conditions. You should not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition.


Something is wrong.

You don’t know what it is, but something isn’t right with your body. You may not have gotten an MS diagnosis yet, but you might suspect that it’s MS or something similar.

Going to WebMD tells you one thing, but you know that self-diagnosing is not the final stopping point. You call your General Practitioner and set up an appointment to begin the investigation process.

You’ve made it this far, but what is the next step to make sure you get some answers?

Healthcare Failings

Unfortunately, simply going to the doctor isn’t going to get you an immediate answer or an answer at all. This shouldn’t discourage you from going: in fact, it should encourage you to go even more and advocate for yourself.

But it is important to go into the process prepared.

Not everyone will have a smooth experience when talking to the doctor about health issues. If you are a woman, you are more likely to be dismissed for pain complaints. MS can cause pain, as can a number of other autoimmune diseases, so walking into the office may feel like preparing for battle: will my health care professional take my complaints seriously?

The answer depends. They will hopefully jump at the chance to figure out what is going on, but some may surprise you and be resistant to exploring your situation.

This post isn’t meant to disparage the medical system, but to shed light on the possibility that you may need to engage in personal advocacy. Being an advocate is important regardless, but having tools and a contingency plan will streamline and hopefully speed up the process of getting answers and treatment.

It is important to remember this: going in with a calm attitude and willingness to listen will help disarm any potentially defensive healthcare professional, but make sure to come in with questions and ready to assert yourself for answers if necessary.

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