MS and Disease Modifying Drugs

My story with Multiple Sclerosis medication.

What was initially a challenging decision has become even more difficult due to the overwhelming influx of information. So many opinions, making the choice even more perplexing. It's important I clarify that my intention with this post is not to provide medical advice; rather, to share my personal experience.

I am a firm believer in the effectiveness of holistic health practices, while simultaneously acknowledging the value of medical interventions when necessary. There isn't a one-size-fits-all approach to managing conditions like MS, or any other illness for that matter. Making permanent lifestyle changes can be very difficult for a variety of reasons. Certain medications can sometimes be more harmful than helpful. Each individual's situation is unique. There is no “right” way.

My hope is to adopt an open-minded approach, fostering flexibility and allowing our bodies to heal through a personalized combination of practices and/or medications. The ultimate goal; to achieve healing, restoring function and good balance. For some, this may entail a commitment to lifelong medication, and that's perfectly acceptable.

Don’t let either world, the holistic or the allopathic, pressure you into choosing sides. Choose your side. Choose what resonates best with you, and pursue the path that proves most effective for your well-being.

Be open to all the options. You can read my thoughts in more detail in this past post.

If you’re interested in what medications I took for my MS, for how long, and if I’m on medication now, read on…

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In June of 2007, weeks before my 25th birthday and my sisters wedding, the decision had been made. I would begin Avonex, a disease modifying drug (DMT) for the treatment of Multiple Sclerosis (MS). An injection to be taken intramuscularly once a week, to prevent the progression of my disease.

At the time, the very thought of this tripped me out, still not having totally processed that I had a disease now that required me to take a weekly medication, a shot.

I was sick. I had medication now. How could this be? Me?!

My initial dose was terrible. The neurologist who outlined the potential side effects of the medication was far from accurate in describing what would transpire and how I would feel.

Important – when considering medication, especially potent ones, seek insights from someone who has firsthand experience rather than relying solely on a doctor who may have no practical knowledge.

The echoes of her words, delivered with a Russian accent, linger in my mind: "You may experience a mild headache, a slight fever." She couldn’t have been more off.

Her description of side-effects wouldn’t come to fruition for quite some time - about 1.5 years. It was a very slow, difficult process for my body to adapt to.

That “slight fever” went to 102, my skin so tender to the touch, my body ached liked nothing I had ever felt before. I basically blacked out, my sister, mom, and cousin were there to care for me. They put me in the shower, trying to cool me down, not knowing what else to do. Somehow, I made it through the night, my mom sleeping beside me, rubbing my hands, trying to do whatever she could to ease my pain. I bet she felt so helpless, but that couldn’t be further from the truth. I was sick for 3 days. In bed. Fever. Chills. The whole thing. It was miserable.

Nonetheless, and despite my ability to digest my current situation, I knew that I needed to do something and if part of that something meant that I had to take an injection once a week that made me feel incredibly sick, then that’s what I would do. And without complaint, I might add. I was tough, I could take it. My years as a gymnast and all the experience that being a young athlete gave me supported my ability to endure, to take the pain and discomfort, to do the hard work, and move forward. Chin up. But, man, it really sucked.

This went on for several weeks. I’d take my shot Monday night and then spend the next few days recovering. Friends and family would come visit me, I had an immense amount of support that I will always mention and always be grateful for. They walked alongside me in so many ways.

After several weeks of sheer misery, trying different mixes of pre-meds, we called my favorite doc back in Santa Barbara. There had to be something we could do. And there was. He advised me to reduce the dosage and slowly build back up over time. In addition, rather than hard core pain killers like Vicodin, he prescribed 800 ibuprofen and Benadryl.

The following week before taking my injection, I took the Benadryl, the Ibuprofen, and half the dose. It worked. My discomfort was tolerable. My fever reasonable. I was only sick the next day, not 2-3 days. A huge relief. A light. I could do this, I remember thinking. And I did. For 8 long years.

Eventually, what was such a big deal, I mean huge, turned into a casual weekly routine. My body adapted and over time the side-effects lessened. After a year or so, it’s hard for me to remember now, my weekly shot was managed with Benadryl and Ibuprofen, I’d have a slight fever, like 99, with light body aches each week 24 hours after my injection. Much better than being knocked out for 2-3 days.

The body aches persisted, and my mom's late-night baths and soothing hand and foot rubs became an unspoken ritual. I got used to the fatigue and managed around it. Over time, I grew accustomed to the discomfort—it became woven into the fabric of my life.

My commitment to managing my condition was resolute. I stuck to my medication schedule not just to avoid relapse fears but also to preserve the tolerance I had painstakingly built. Navigating the monthly calls to the specialty pharmacy, though only a 10-15 minutes ordeal, consistently irked me, testing my patience each time.

I made a conscious effort to integrate multiple sclerosis into my life, not let it dictate terms. Taking my meds on the go, tweaking schedules for overnight stays or trips became second nature. Long-distance travel, with its refrigeration demands, posed challenges, but I found ways to adapt.

With time and a lot of mental effort, aided by therapy and family, I conquered the hurdle of self-administering injections. It wasn't the fear of shots but the idea of injecting myself with something that would cause so much discomfort that unnerved me. The introduction of a push pen, a simple click, streamlined the process, making it more manageable.

As new drugs emerged, offering more choices, I found myself stable with no relapses in five years. Preferring continuity, I stuck with Avonex, having adapted to its routine while newer medications needed time to prove their efficacy and safety.

In 2015, after eight years on Avonex, my annual doctor's visit gave me the nudge to explore a change. A once-daily pill with minimal side effects—Gilenya. No more injections, no more body aches, no more reliance on 800 mg Ibuprofen. The prospect felt almost surreal, and when I processed this news at home, I unexpectedly burst into tears—tears of relief and release. It was over.

For three years, I faithfully took Gilenya. The absence of acute sensations aligned with expectations, yet it left me in a paradox. I felt great overall, making it challenging to discern if the medication was truly making a difference. My MRI results remained consistent over the years.

Throughout my journey, I encountered an array of drugs aimed at managing my disease and mitigating medication side effects. Sleeping pills, pain relievers, anti-anxiety medications, stimulants for fatigue, migraine meds—you name it. I experimented with a few, with the fatigue medication being the absolute worst. It made my heart race like crazy, and after just one attempt, I knew it wasn’t for me.

Instead, I chose to address my symptoms and side effects through holistic lifestyle practices. For years, I felt I had discovered the ideal blend of Eastern and Western approaches. I felt safe. Secure. I was not only living with MS, but thriving.

As the years rolled by, I found myself in a familiar loop with my doctors, constantly probing their opinions on my lifestyle choices and how much they truly contributed to my well-being. It became a routine question, and regardless of which doctor I threw it at, the response remained frustratingly consistent. They'd commend my efforts, give me a virtual pat on the back, but couldn't definitively say it was working, lacking the clinical studies to back it up. Talk about a buzzkill.

The aggravation was real. It's like, you know you're doing something great for yourself, something that profoundly helps, but they won't officially endorse it because there's no study to wave around.

In my head, I'd be screaming, "What about my body? Where's my living proof, my personal success story?”

The idea of going off medication was scary, especially with the medical industry holding back on the cheerleading unless there's solid evidence. I couldn't shake that persistent "what if." What if the doctors had a point? What if I ditched the meds and faced a nasty relapse?

Despite this fear, I couldn't ignore the growing thoughts in my mind. Did I still really need those meds? Was I still sick, or had my disease gone into total remission? Logically, I knew I had overhauled my environment since the illness, creating a less disease-friendly space, but that fear still lingered, questioning the necessity of the medication.

Luckily, pregnancy came around to make the decision easier for me. My partner and I had decided that we wanted to have a baby. For me, that meant getting off my medication. The majority of MS drugs are not safe to be on when trying to conceive.

Side note: ladies, if you haven’t had children and want to have them, be sure you share this with your doc to come up with a plan that works for you.

I found a “legitimate” reason to cautiously consider transitioning away from my medications—an acceptable excuse that would shield me from the potential judgment of others and my doctors. The desire to discontinue medication had always been a sensitive topic, as I feared being perceived as reckless and it also scared me a little.

However, the landscape shifted with the prospect of pregnancy. This was a decision nobody questioned, not even most of my doctors (with a few exceptions). One medical professional urged me to adhere to an approved medication, emphasizing the risk of a postpartum relapse. Another went so far as to suggest avoiding pregnancy altogether due to the potential complications many women face postpartum. It was a complex mental space to navigate, feeling the weight of the decision, but I knew deep down that building a family was something I truly desired.

The verdict was in—I would stop my medication. But before taking that significant step, my intuition prompted a few considerations. Recognizing the potential stress of the conception process and the unpredictable timeline, I decided to prepare my body.

Over the following months, I underwent acupuncture to support my hormones and ensure regular and healthy cycles suitable for conception. Additionally, I consulted with my naturopathic doctor, a perinatologist to verify my overall well-being, and revisited my neurologist for a final consultation before completely discontinuing my medications. I meticulously attended to every detail to minimize stress, recognizing its detrimental impact on multiple sclerosis.

Let's be honest—there was also an undeniable fear. Medication had become a sort of background safety net that I had grown accustomed to relying on. I was about to ditch it and go freestyle.

I leaned heavily on all my wellness practices, understanding the importance of having complete confidence in my body to avoid any additional stress associated with trying to conceive. At the time, I had already taken a significant leap in growing my business, entering a partnership and dealing with the stress of paying rent for a studio. That alone was demanding, and I didn't want to compound it with worries about my health. Preparation wasn't just about my body; it extended to my mind and soul.

So, here I was, on the brink of making this transition. Surprisingly, the idea evoked sensations similar to standing on the edge of a cliff, filled with adrenaline and a flurry of thoughts as I contemplated not taking my pill that first day. It was time to jump. With each passing day, then week, those intense feelings began to soften. I was okay. I felt a newfound confidence in my mind, body, and soul. The “time was right”. Or so I thought.

In the realm of life's unpredictable twists, where control is an illusion, the Universe often reveals its ironic sense of humor. Just four weeks after stopping my medication, my mom was diagnosed with breast cancer. So long perfect timing.

Up until that point, I had kept this significant change in my life to myself, confiding only in my partner. I wanted to preserve my peace of mind before inviting anyone else into the narrative.

Now, life had dealt its cards, and decisions were made. So, I adapted. I remained resolute in my commitment to self-care and forged ahead, navigating the unexpected twists with a positive outlook and attitude. I shared the news with my mom and we all moved onward. Her treatment being of the utmost importance. I was doing just fine.

After 5-6 months of "trying" to conceive, our efforts were abruptly halted when my partner was diagnosed with testicular cancer. Once again, the Universe threw in a super-fun plot twist. Not only did my plans for peace get disrupted by my mom's illness, but now Josh too?! Our pregnancy plans were sidelined, replaced by treatment plans for his health.

This unexpected turn of events brought a fresh set of considerations into an already complicated situation. More variables to juggle. More potential stress to manage. Should I resume medication?

After some contemplation, I decided that one round of Ocrevus could be a reasonable compromise. The medication stayed in your system for only six months, giving us the flexibility to resume our pregnancy journey if my partner's health improved. At that moment, my primary focus was on Josh. I felt a deep confidence in my body and my ability to manage my MS; I wasn't overly concerned. I knew I would be okay.

The reported side effects were said to be mild, and though there were long-term risk factors, including breast cancer, I felt okay with the idea of taking one dose and then assessing how I felt. I wasn’t thrilled, but I also had pressure to make the “safe” choice, partially self imposed, but pressure nonetheless. It was a heavy burden and a hard decision to make. I had grown used to not taking medication and was feeling great, should I turn back now?

The Ocrevus was fine, I felt nothing, which was great. But as the months went by and when it came time to schedule my next treatment, I couldn’t. My partner was feeling better and I couldn’t shake the hope of a potential spontaneous pregnancy. Plus, I felt totally fine and confident being off meds, in fact now, the tables had turned. Now, I was a little fearful to take the medicine.

On top of wanting to remain available for pregnancy, my feelings around how the medication made me feel emotionally had changed. I no longer felt scared without it. The need for my "safety net" had dissipated. In fact, I didn't even feel sick, and that had been the case for a decade.

Notting this feeling inside and trusting my gut, I have remained off medication since. It’s been 5 years and I feel great. I will never know how much the medication supported my prognosis, but what I do know with certainty, is that how I care for myself, mind, body, soul matters. I also can’t deny the years of medication that I took.

Thank God. Thank you to me, for all my hard work. Thank you to my family and friends that have supported me the whole time. Thank God for the docs.

This is by no means me giving advice on whether or not you should take medication. That choice is yours alone. Instead, I share my story because I know that at various times along my journey, I have scoured the Internet looking for someone who could relate, share advice, commiserate, etc.

Our stories have value in that they provide a mirror of support to all those going through similar difficult decisions. I also like to share because, as many of us with MS know, appearances can be deceiving. This disease is no joke and we endure quite a lot. There is a reason we are “MS Warriors”.

My journey hasn't been easy, but it's uniquely mine, and I am grateful for each step I've been able to take. For now, I am medication free and it feels great. But it came with time, hard work, and getting to know my body. It was far from a frivolous choice. Most importantly, the choice has always been mine, what I’ve felt comfortable with.

Wherever you are in your journey, walk on! And know that we (MS Warriors) are all walking alongside you. You’ve got this.

I’d love to hear your stories and experiences, please share with the group in the comments.

I am available for 1:1 sessions if you or a loved one could use the support.