I continued to improve during the weeks following my steroid infusions. The medication reduced the inflammation causing the worst of my physical symptoms, and I started to feel a bit better. My husband and I met with the neurologist at length about the options available for disease treatment, including the pros and cons of each method. We knew very little at the time about what could be done for Multiple Sclerosis, but one thing was clear and remains clear today. There is no cure; however, some therapies can delay or slow the progression of the disease over time.

Medications used to “modify” the course of MS are called disease-modifying treatments or disease-modifying therapies (DMTs). DMTs will not reverse the damage already done, but they can reduce how many relapses someone has and how serious they are, and they can also prevent MS from getting worse by slowing down the damage caused over time. Basically, DMTs improve the long-term outlook of someone suffering from MS. DMTs are not used to treat daily symptoms. Those, along with relapse symptoms, are typically treated with anti-inflammatory steroids, such as the 3-day intravenous course I had just completed, or with various symptom-targeted medications and/or rehabilitation therapies.

Many factors are considered when selecting which DMT to use. The day we met with the neurologist to discuss my options, he used a whiteboard and markers to explain each and help us better understand them. It was a lot to take in, but his method made the process much easier.

There are 3 types of DMTs available for treatment

1. INJECTIONS

First-generation injectable treatments are older medications and have the lowest risk. They have been around the longest, the first approved by the FDA in 1993. Before that, there was no treatment and no way to slow the progression of MS. These older medications are not as strong as the newer DMTs but are sometimes preferred because they have been studied for so long and their benefits and side effects are well-known and documented. Injectable DMTs have fewer side effects, but you have to be willing to self-inject daily, weekly, or bi-weekly. Not easy for everyone.

2. ORAL MEDICATIONS

Oral medications, in the form of pills and tablets, are an option for those that experience side effects from injections, haven’t had success with other medications, or for convenience when patients prefer not to self-inject. These have been available for MS treatment since 2010. It is important that patients taking oral medications maintain a regular dosing schedule. Oral DMTs may be a more convenient option, but many researchers agree that further research is needed to assess the long-term effects of these medicines.

3. INFUSIONS

Infusion-based DMTs are the newest form of medication to delay the disease and are given through an IV directly into a vein at a medical facility. DMT infusion therapy is considered more aggressive and is highly effective in slowing disease progression and preventing flare-ups in those with active MS. Most patients tolerate infused medications well; however, they are monitored more closely because of the greater risk of side effects and infections.

We spoke with the neurologist at length about the options and what would be best for me. Based on the MRI and the activity of my disease, he suggested a more aggressive treatment. The medication he recommended, Tysabri, was an infusion therapy that has shown to be successful at slowing the disease progression and reducing flare-ups. Tysabri was approved by the FDA in 2004 and is given via IV infusion every four weeks. It has few side effects, and most patients tolerate it well. It sounded like the perfect treatment plan, until…

It has one serious drawback. Tysabri increases the risk of a potentially disabling or even fatal brain inflammation called progressive multifocal leukoencephalopathy, or PML. Try saying that 3 times fast. PML is caused by an infection called the John Cunningham virus (JC virus). Thankfully, PML is rare; however, the JC virus is quite common, infecting 40% to 90% of the general population. You can get the JC virus at any time in your life, but most people are infected as kids. It causes no symptoms and usually remains dormant in healthy individuals, so you don’t even know you have it, but because some DMTs alter a person’s immune system, the virus can be reactivated. Researchers believe Tysabri stops certain immune cells that normally suppress the virus from attacking the brain, so patients receiving this infusion are closely monitored for signs of JC virus antibodies. If they are found to be present in bloodwork, then another DMT will have to be used to reduce the risk of PML.

So, there’s that.

Am I willing to take the risk for the reward? Ugh. To make things more difficult, I am the WORST at making decisions. And this decision was one of the most important I have ever had to make. What I decided could change the quality of life I live, now and in the future. It could impact my symptoms, my disease progression, and my nerve damage. Hell, it could impact my life expectancy. Folks, I can’t decide on dinner most nights, so this was asking a lot of me someone like me.

I knew how sick I had been for some time, and it was a struggle. How could I manage if it got worse? How would my family manage taking care of themselves and taking care of me? My husband is self-employed, what happens if I can’t work and can’t contribute a salary, or carry insurance and benefits for the family? My kids are teenagers but still have years left before they head out on their own. I wanted to be able to help them grow and get ready for the world. My husband is still learning how to use a hamper. I was stressing out, but I also realized it was ultimately my decision. My health. My future. In the end, I decided the risk was indeed worth the reward. My husband agreed, so we moved to the next step.

Bloodwork was completed to check if I was eligible to receive Tysabri. I showed no antibodies for the JC virus, so I was cleared by my neurologist to receive the medication. Then, it was on to the insurance company for approval. Following that process, I was contacted by Biogen, the company that manufactures Tysabri, for a welcome call with a case manager to go over my insurance coverage, an overview of the risks and side effects of the medication, and what to expect at my first infusion. I held my breath when he began to tell me how much it would be. Through my research online and MS message boards and groups, I learned the astounding cost of DMTs, particularly Tysabri. One dose of the medication (300mg/15mL) could be anywhere from $8,000 to $12,000. That would be every 4 weeks. $8,000 to $12,000 every 4 weeks. That is not a typo, people. I typed it twice intentionally. Do you understand now why I was holding my breath during the financial section of the call? I was shocked when he told me it would be a $25 copay with my insurance. I remember asking him, “Are you sure?”. Yep. I remember thinking how grateful I was to have fantastic health insurance from my employer. And even better, I enjoyed my job and was able to perform my duties remotely, and with confidence since I had been with the company for more than 20 years. (Okay, so this is a little difficult to type because…well, we’ll get to that later).

By the end of June 2022, I was officially scheduled for my first Tysabri infusion on July 14th at 10:30 am. I was excited and scared. Happy and terrified. Nervous and confident. My emotions were, indeed, a dumpster fire.