This post is Part Three of My MS Story
Have you read about how I was diagnosed with MS?
We all have turning point moments in our lives. Meeting with a doctor to select my MS medication is one of mine.
Treating Multiple Sclerosis is complex. Your care team must guide your decisions to treat your ongoing relapse (or MS attack), lesion-caused symptoms, and preventing your disease progression. Shortly after my diagnosis, I met with my nurse practitioner (NP) to discuss treatment options.
My NP explained the roughly two dozen DMDs on the market for MS. She explained how each medication works, its efficacy, and the significant symptoms. We’re fortunate to have effective DMDs available today. But they’re scary. Each drug has a long list of possible side effects ranging from nausea to liver damage and even placing you at risk of a life-threatening brain infection.
Drowning in uncertainty, you weigh the medication’s side effects against the symptoms caused by future lesions. It’s like gambling, but instead of risking a renewable resource like cash, you’re going all-in and risking your central nervous system.
Negative thoughts flooded my taxed brain.
It’ll be my fault if I choose the wrong medication, I remember thinking. What if it doesn’t work and the subsequent lesion impacts my mobility? What if people at work notice the side effects? What if I get a brain infection and die?! It will all be my fault.
It’s imperative to your mental health to define your goals and the risks you’re willing to accept before selecting your treatment plan. You can’t control the outcome. But knowing you used a rational, educated decision process will help you cope in the future.
My husband and I discussed our goals and acceptable risks before my appointment. Our goal was to find a drug that prevented new lesions and had minimal daily side effects to ensure I had an overall good life quality. We were willing to risk the more severe side effects, like liver damage and brain infections, so long as we monitor my blood work.
It was important to us to take an aggressive approach to prevent new lesions.
My husband and I wanted to take the most aggressive treatment approach offered to me. I already have many lesions. They significantly impact my well-being. I wanted every chance to prevent a lesion that would steal my ability to walk unassisted. I was also one year into my doctorate and working in a field that requires critical thinking skills. Another brain lesion could steal the cognitive functions I needed to perform my job. While other medications are less scary and more convenient, I didn’t want to increase my risk of more lesions.
We narrowed my medication options down to three: Tysabi, Tecfidera, and Aubagio. My NP asked us to read a library of materials about each medicine before my next appointment. She ordered like 50,000+ blood tests to determine if these medications were viable options for me.
I didn’t expect to have any blood left when I saw the dozens of tiny tubes the phlebotomist set out for my initial blood draw. Various underlying conditions can lead to serious risks if you start taking medications like Tysabi, Tecfidera, and Aubagio. We needed to ensure I had a healthy liver capable of handling harsh medicines. Some of these drugs can exacerbate the Herpes virus, so we needed to see whether I had those antibodies. Tysabri and Tecfidera place you at higher risk for developing a brain infection called progressive multifocal leukoencephalopathy (PML). But you’re only at risk for this infection if you’ve had the John Cunningham virus (JCV) before.
If you’re looking into taking one of these medications, you can expect to have the following blood tests completed:
- Varicella Zoster IgM Antibody (chickenpox)
- TSH Test to check your thyroid gland health
- JCV antibody to see if you’ve ever had the JC virus
- Tuberculosis (TB) test
- Herpes Simplex Virus Type 1 and 2 antibodies test
- Hepatitis B Surface Antibody
- Comprehensive metabolic panel
- A handful of CBC tests
Then we waited for my next appointment. My blood work was normal and healthy, and I was JCV negative, which meant any of the medications were available to me. During my next appointment, we chose Tysabri as my first DMD for the following reasons:
- It has a high success rate at preventing new lesions and progression of existing symptoms.
- It has more mild symptoms compared to Tecfidera (I didn’t want any gastrointestinal symptoms, and I was terrified I’d experience the flushing (sudden redness) in the middle of a presentation or meeting).
- I only had to take it once a month.
I had my first infusion a few weeks later, an experience I’ll write about in another post. At the time of this post, I’ve been on Tysabri for over four years, totaling nearly sixty infusions.
Would I choose Tysabri today?
Tysabri is an incredible gift. It’s prevented new lesions for four years, and my overall experience is excellent. I love not being responsible for remembering to take a pill or inject myself on a schedule. My only responsibility is showing up to my infusion every 28 days.
However, if I were back in that chair making the decision today, I would choose Ocrevus as my DMD. Ocrevus wasn’t available when I was diagnosed. It’s incredibly effective, just like Tysabri.
The main benefit of Ocrevus over Tysabri is you only have to get an infusion every six months versus every 28 days.
Here’s the truth: Your infusion shackles you. You can’t easily change infusion centers. You can’t take it with you on vacations, business trips, or if you have to travel for a family emergency or a wedding. Besides adjusting it a day or two to accommodate your schedule, your life very much so revolves around your infusion day.
We have to plan everything around my monthly infusion dates.
Wouldn’t it be nice if your infusion chain gave you enough room to move around for SIX months instead of 28 days??? That’s one of the many miracles Ocrevus offers people living with MS.
Regardless, I am delighted with my choice to use Tysabri because it’s prevented four years’ worth of lesions. I’ll sit in that chair every 28 days as long as it continues to save my nervous system. It’s the least I can do.
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