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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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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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Sugar and Chronic Illness

This post was originally published in October 2017. I’ve updated it to include a follow up since the original publication. Find my thoughts on sugar and chronic illness under my update.

2019 Note: This was a check-in post relating to a series of diet changes I made. Because I was breastfeeding Jai, I could not take my MS medication until I finished. I wanted to find a way to manage my illness until I restarted my medication.


Cutting sugar went smoother than I expected, though there were a few days where I was irritable, according to Ash. I refuse to believe him, but deep down, I know he’s right. No longer having that emotional crutch makes for a very grumpy me.

Psychologically speaking, it was a lot easier than I expected. As long as I didn’t have sugary treats in the house (I tossed all of our sweets or sent them with Ash to work); I avoided buying sugary drinks (everyone knows that my weakness is a good Pumpkin Spice Latte in the fall). If I had fruit for any sweet cravings, I was good to go. Every time I drove by a Starbucks, there was a temptation to pull in and just give in to that PSL craving, but I made sure to keep going and have a few bites of pineapple as soon as I got home.

A couple of times, I did eventually stop at Starbucks, and I made sure only to order an Americano. Before I was pregnant, I was in the habit of drinking all my coffee black unless it was a latte. It wasn’t hard for me to get back into drinking with nothing in them. I think it helped a bit too.

Coffee is a wonder drug (and sadly, probably something I need to add to my drop list), and can make a lot of things better.

I didn’t notice any headaches, though, at the beginning of the week, I was more sluggish and in need of an extra nap or two during the day. By the time Ash came home from work, I was very ready to pass Jai off to him, so I could lay down and not think or move for an hour. By day 3 or so, I had a little more energy, and by this morning (day 5), I had even more energy to do my running around without the need for a nap.

I also noticed that during my long run on Thursday, I was able to keep up with my mom and felt less fatigued at the end of it. I also felt motivated to go again this morning (though that would be off schedule). Me? Motivated to run off schedule? This really is unheard of – I hate running.

While shopping, I made sure to review all the labels like I said I would: any time it was High Fructose Corn Syrup or unidentified form of “sugar,” I would move along. From my research, they said that sugar is hidden in everything, and it really is true. Sugar is everywhere. Foods that I usually love to eat, like certain types of crackers or even grab-n-go frozen meals…all contain sugar. I also made sure to avoid agave and honey. If the item were sweetened with fruit juice or dates – I would be willing to grab it to consume.

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Reaching Out to Others

I struggle to ask for help. Ash will tell you that he has to drag it out of me when he knows I am struggling. I will get frustrated in those moments and give into his offers for help. Here’s how bad I am: when I was pregnant with Jai, I refused to ask for help even when I needed it. I had something to prove, mainly to myself, that I wasn’t helpless. While being independent isn’t a bad thing, learning to be okay with reaching out to others is equally important.

It’s humbling when I admit I need help. It feels like a weakness when I do. I am not imagining it either, American culture does not encourage asking for help. With the reemergence of the “bootstrap” narrative, it can lead us to feel awkward when we want to ask for help. Individually, Americans are happy to help those around them. But looking on a broader scale, Americans tend to prop up those who find success with minimal help.

This can lead to the rest of us feeling judged anytime we need to get help.

It would be nice to do everything on our own, but with a chronic illness, that’s often impossible.

Chronic Illness & Asking for Help

Having a chronic illness means we will need to ask for help at some point. It may be from family, friends, or healthcare providers. When we ask for help, we are performing an act of self-care.

But getting to the point where we can ask for help is the trick. Often, we’re dealing with an invisible illness. When we reach out for help, and we know we don’t look/act sick, it can feel like we’re being unreasonable. For myself, I feel like I am taking advantage.

If I need help from anyone, I will bumble out justifications why I need the help. I often feel like others won’t understand, or I need to remind them that I have a chronic illness. At times, I feel like I manage my MS so well, that others forget I even have it. So when I need help, I am coming from a place of “they will think I am taking advantage of them,” or “they will think I don’t really need the help.”

I recognize that I am being unfair to others when I take this attitude. I am not trusting that they will understand or that they don’t remember. People remember I have MS when I tell them. It also comes from a space of not believing others when they say, “let me help you.”

Learning to be “Okay” with Help

It is okay to ask for help. For the most part, you know what you are capable of doing. So when there comes a time where you need to reach out to others, do it.

But if you ask for help, show appreciation for whatever help you receive. I have helped others, and sometimes I receive an insult in place of gratitude. You may find it’s a similar situation when you ask for help: you feel vulnerable, and when you do, you may be slow to express your gratitude. But you want to preserve your friendship and be able to ask those people for help again.

Be sure to express your appreciation. Be okay with asking for help. Work on releasing any feelings of vulnerability and look at getting help as a sign of your inner strength.

You Are Not Alone

Coping with a chronic illness is a lonely affair. Your symptoms, your struggles, your victories, they are all internal fights for the most part. These battles become hidden from the outside world. It makes dealing with a chronic illness one of the loneliest journeys you’ll make in your life.

But you are not alone.

There are support groups out there relating to your illness, online and in-person. If you are uncomfortable with the support group dynamic, you can always read blogs and lurk in forums. You can find connections out there and similar stories/struggles to your situation.

The more you reach into these safe spaces for your illness, the more comfortable you should become in recognizing that there is normalcy with your disease. When you normalize your experience, it should be easier to reach out to others to help you. You see that getting help is part of the disease and there’s no shame in doing that.

Help Others Help You

In September, I reflected on the need some people have to help you cope with your illness. You can always say “no” to their help, but sometimes they are insistent, and you do need them.

To be clear, you are under no obligation to allow people to help you if you don’t want it. But sometimes it is easier to give in to the insistence and let them help.

In these scenarios, have a pre-set list of things you are willing to receive help on. It may be driving you to appointments, meeting for social interactions over coffee/tea, or dropping a pre-made meal off. By having an “okay” list to draw from, you won’t compromise your values, and you won’t be left struggling to find something for your friend to do.

It’s hard to accept help from others, but we cannot pretend we are an island. Sometimes it’s essential to reach out to others and let them help us cope with our chronic illness.


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Featured photo credit: Canva