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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assessing-2019-goals

Assessing 2019 Goals

We still have a few more weeks left in 2019, and I can’t believe it. This year flew by a lot faster than I care to admit. I was on the phone with a friend the other day, and they pointed out how close to the holidays we were. I realized I was in denial, but as much as I would like to think there are more weeks left in 2019, we are nearing the end.

To that end, I am trying to get ahead with my goals for 2020. But before I do that, I have to begin the process of assessing how my 2019 went. Before the commotion of the holidays is upon us, I encourage you also to take a few minutes to determine how your 2019 went. It might surprise you and give you a little extra pep going into the holiday.

My Self-Assessment

I created one primary goal and four minor goals that would work to help me achieve my main goal. I decided to keep it simple this year, as I was doing something I’ve never done before: work to stick to my goals.

For those signed up for the newsletter, what I am about to list out isn’t news. I kept my 2019 goals “private” amongst those who follow the MS Mommy Blog newsletter, but at the end of the year, I have no qualms about sharing them now. My primary goal for 2019: to lose 10 pounds over the year. My four minor goals to help me achieve this:

  1. Meal planning
  2. More cross-training
  3. Run a faster half marathon
  4. Work towards being less stressed overall

Surprisingly(?), I found a measure of success in four of my five goals. My primary goal: on January 5th, I recorded my weight at 141 pounds. As of a few days ago, I recorded my weight at 130 pounds, a weight I’ve held steady for several weeks. I had two reasons for the weight loss goal: one, to get me solidly in the healthy weight range according to the BMI. Two, to help me run faster races to help me achieve personal records.

I believe that the success of this primary goal is due to creating four smaller goals that worked towards it. Each one forced me to be mindful of my eating and exercise habits, and working towards a faster half marathon meant I needed to pull my weight down.

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assessing-chronic-illness

Assessing your Chronic Illness

Chronic illness takes many different paths. For some people, their illness takes over their lives, rendering them immobilized from disability. For others, it registers as a minor inconvenience where they can lead relatively “normal” lives. And there’s a chunk of people who fall somewhere in the middle. As we near the end of the year, it’s an excellent opportunity to assess our chronic illness objectively. As we look towards the new year, it allows us to enter 2020 with a fresh perspective about ourselves and our disease(s).

Often, we think we know where we fall in our chronic illness scale. Sometimes, our emotional mindset distorts the actual reality. I make this point as someone who fell into a trap believing I was worse than I was. It took several self-reflection sessions to realize I was not looking at my MS realistically.

Because I was unrealistic about my MS, I was not approaching my management effectively. I thought I couldn’t exercise, I couldn’t hold down work, and struggled for a time over becoming a mother. My distorted view of my abilities limited me for several years from achieving my personal goals.

Now, this isn’t the case for everyone. You may find that you do have a realistic grasp of your disease, and that’s an ideal place to be. You know what you need to do to manage it. However, if you haven’t taken the time to assess your illness and abilities, you may have some positive news after your reflection. You may find that you are more capable than you expected.

Assessing Your Wellness

There are times where we are painfully aware of our abilities and limitations. If diagnosed with an extreme form of your chronic illness, like Primary-Progressive or Secondary-Progressive MS, then there is a physical limit to your abilities. There is a clear delineation between what can and cannot be done.

But the majority of the people diagnosed with MS are initially diagnosed with RRMS, around 85%, which is a “milder” form of the disease. There is a range between those who barely feel their MS to those who undiagnosed PPMS or SPMS. And because of this range, it’s hard to be sure of our capabilities. While it might be tempting to do, we should never compare ourselves to others as the manifestation of the disease changes from person-to-person.

Easy to say but hard to do when it’s in our nature to measure ourselves by others. When you have celebrities out there publicly displaying the most extreme aspects of their MS, without providing any context (if they have RRMS, PPMS, or SPMS), it’s hard not to wonder: will that be me someday? Will I need an extreme form of drug therapy? Will I have to shave my head? Will I lose my voice? Will I need an expensive mobility scooter?

How bad will my chronic illness get, and should I be more cautious in how I live to avoid progressing the disease along?

Chances are, you won’t follow the same path as these celebrities, at least not right away. But ask yourself this: is the mental image of my disease, in its current state, matching reality? Am I making decisions on my condition based on what I see others doing, and not what I am capable of doing? Have I removed myself from the equation altogether and not effectively treating my disease?

To restate: do we fall into the trap of pre-maturely disabling ourselves because we have a distorted view of our illness?

I did. For years after getting my diagnosis, I assumed I would be permanently disabled by the time I hit forty. I started to act like I was on the path of disability, discouraging myself from actively treating my disease beyond medication. I had the attitude of “why bother?” for a lot of things in my life. If I had eight more quality years, why commit to something that would take ten years? 

It wasn’t until I committed to becoming a mother did I start to assess my abilities honestly. It took months after Jai’s birth for me to realize my perspective about my illness did not match reality. While I still deal with fatigue, I was not fast-tracked to immobility by forty as I thought. When I realized this was the case, I saw the limitations I kept experiencing surrounding my MS wasn’t from the disease but from me.

It was rather liberating when I came to this realization.

Going into the New Year with a Chronic Illness

Taking the time to assess your chronic illness provides you with the tools to decide how you want to approach the new year. If you’ve wanted to make some goals for yourself, but felt discouraged over whether you can do it or not, take time to assess and test yourself. 

For example, you may accurately assess that you cannot walk very far due to mobility issues. But you’ve always had a goal to walk a mile a day and were reasonably concerned about achieving said goal. Be adaptive, set the goal, and safely work yourself up to walking a mile a day. There will be days where you can achieve your mini-goals and days where you should honor your limitations. It may take you all year to work up to that mile, but what will you learn about yourself in that time?

Two things you will hopefully learn in the year: one, that you aren’t as limited by your illness as you thought. Two, you are more resilient than you might previously give yourself credit. Goals, if they are worth it to you, take time. Try not to feel discouraged if you find it takes longer than expected to reach your goal.

If you assessed your abilities and found yourself more capable than previously thought, like me, then take time to set goals and find your true limitations (in a healthy manner). Honor what your medical professional says, follow their guidelines, and work to break free of any mental blocks you’ve placed on yourself.

You may find that you are better managing your illness because you are allowing yourself to be more aware of what you can and cannot do. The benefits of goal-setting and working towards those goals are numerous and worth doing. 

The key is to take a chance and figure out where you stand in your illness and deciding if you are honest with yourself. Once you’ve done so, you never know what you can achieve in the new year.


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Featured photo credit: Canva