It’s a Multiple Choice Exam, and Wrong Answers will be Penalized

Usually when you go to the doctor, you are given a diagnosis and given a treatment. You have a bacterial infection? Here’s an antibiotic. You have a rash? Here’s some hydrocortisone cream. With MS, you are given 3-4 different treatment options and you are told to pick. In my case, my neurologist offered Aubagio, Tecfidera, Ocrevus, and Kesimpta.

So how do you pick a treatment? I’m a pretty smart and well-read person, but I don’t have a Doctor of Medicine degree. The decision felt overwhelming.

My research led me to understand that there are three general tiers of disease modifying therapies (DMTs) for MS. The first tier are the “OGs”, like Copaxone. They have been around the longest. They have the clearest safety history and the least detrimental side effects. They are also the least effective against MS. My neurologist didn’t recommend any of the DMTs in this tier. The second tier is where you will find most of the pills, like Aubagio and Tecfidera. These drugs aren’t brand spanking new. They have a fairly well established safety history, though not as well established as the DMTs in the first tier. They have some side effects that make them unappealing – for example, Aubagio’s side effects, listed on the MS Society’s website, include “diarrhea, nausea, flu or sinus infection, upset stomach, abdominal pain, rash, abnormal liver tests, hair thinning or loss”. Finally, there is the top tier – what I like to call the nuclear option. These drugs are new. They are cutting edge in fighting MS. They are the most effective at preventing relapses and disease progression. Alongside that high degree of efficacy comes the most serious side effects. From the MS Society’s website: “Kesimpta may have the potential to cause more serious side effects including hepatitis B virus (HBV) reactivation, and Progressive Multifocal Leukoencephalopathy (PML), a rare brain disease caused by infection by, or re-activation of the John Cunningham virus”. What’s PML? A very serious disease that can disable or kill you.

There are two schools of thought on how to treat MS. Some say to use a lower tier DMT, and escalate as needed when it isn’t working. Others say to hit it hard and hit it fast – take the most effective drug that you are comfortable with taking from the get-go.

I follow a neurologist who specializes in MS on YouTube, Dr. Aaron Boster. He gives the following analogy to explain MS DMTs: imagine that you have three children, and you are taking birth control. That birth control won’t get rid of any of the children that you already have, but it should (provided that it is working) prevent you from having any more children. MS DMTs won’t get rid of any of the brain lesions that I already have. Taking a DMT is intended to reduce the incidence of future lesions. He’s in the hit it hard and hit it fast camp.

Those who say to start with a less effective treatment and scale up, if and when needed, would likely recommend that I pick a DMT in the middle tier. My symptoms aren’t that bad. I’ve had one attack. I have cloudy vision in one eye. I have tingling in the fingers of my left hand that mainly only presents when I am exercising hard. But I keep coming back to what Dr. Boster said. This isn’t about the “children” (lesions) that I already have; it’s about preventing ones that I don’t want in the future.

I bluntly asked my neurologist, “if your wife had my symptoms and my labs, what would you want her to take?” He answered that he would tell her to take either Kesimpta or Ocrevus. He’s in the hit it hard and hit it fast camp too.

Now, there is also a third camp that argues that you can control MS relapses and progression through lifestyle changes. There are two main reasons why I don’t buy into this camp. First, none of the leading neurologists agree with this approach. While all of the leading neurologists agree that lifestyle can improve a patient’s prognosis, none would agree that this replaces the need for a DMT. Second, my first MS attack occurred after I had lost 44lbs and at a time when I was eating very healthy, running regular 10Ks, and drinking alcohol very infrequently. This is when my first MS attack struck. Months into a lifestyle change for the better. I simply cannot reconcile my first attack happening at one of the healthiest points in my life with lifestyle being able to prevent MS relapses effectively. Is it important to maintain a healthy lifestyle when living with MS? Absolutely! I’ve kept up my healthy lifestyle. I’m now down a whopping 68lbs (more on lifestyle changes for MS in future posts). But is that enough? Not for this girl.

After weighing the pros and cons extensively, I decided that I wanted to join the hit it hard and hit it fast camp. So the decision became Ocrevus versus Kesimpta. Both are highly effective “b cell killers”. They are CD-20 monoclonal antibody therapies. The biggest difference between these two DMTs is the mechanism of delivery. Ocrevus involves infusions every 6 months, whereas Kesimpta is a monthly shot that can be self-administered at home. Both involve a more rigorous schedule around the outset of treatment. With Ocrevus the first infusion is split into two doses two weeks apart. With Kesimpta, you take a dose a week for three weeks, then take a week off, and then it’s a monthly dose thereafter. Being able to take my medicine at home appeals to me.

I’ve picked option D, Kesimpta. I sure hope that I chose correctly. I’ve always been good at multiple choice exams in the past! Only time will tell whether it keeps me free of new disease activity. Only time will tell whether I can live with the side effects of the drug. Only time will tell whether damaging my immune system in the middle of a global pandemic was a sound choice. In good news, I’ve been given a third dose of the COVID-19 vaccine in preparation for starting Kesimpta in the hopes that this will mitigate some of the risk. I will update my experiences with Kesimpta in future posts. I expect to start my life with Kesimpta sometime in the next 2-4 weeks. If it is effective and well tolerated, it may be in my life for quite some time to come.