I had my first dose of Kesimpta last Friday. My emotions were not what I had expected and were running amok all evening. The week leading up to injection day was full of hope and excitement. No more infusions! No more Ocrevus! I was so convinced Ocrevus was responsible for my worsening symptoms that I could not help but be ecstatic about stopping it. But, the truth about stopping Ocrevus, my little secret, is that I almost didn’t.

Even after my symptoms continued to worsen, after speaking with others who had the same experience, after having my first flare since my diagnosis, and after vehemently telling people I would never have another infusion of that toxic poison, I walked into that neuro appointment so downtrodden that I had no intention of telling my neurologist I wanted to stop Ocrevus. That is how hopeless having multiple sclerosis can make you feel. You can be convinced with every fiber of your being that something is doing you harm yet continue to do it because you simply feel like you have no other choice. Why not? There is no cure. If that did not work, then why would the next thing? If the newest, most celebrated MS medication on the market actually made you worse, then what is your next step? How do you find hope in anything after that?

That is where my head was that day when I walked into my appointment. I had decided it was not worth what little energy I had to even mention it. I would continue to get the infusions because I did not see what difference it would make in my life if I did or didn’t. I was never running again. I was never biking or hiking the way I want to again. No amount of medicine was going to give me my legs back. At that moment, nothing mattered to me.

The only thing that brought me out of my depressive stupor was my neurologist informing me about the newly added side effect of Ocrevus causing colitis. After two years of telling him the medicine was not working for me, after two years of telling him I was getting worse on it, and after two years of him telling me to give it more time, this was finally him seeing that the medicine was not the perfect drug he previously saw it as. In fact, he seemed extremely upset over this new development and for the first time was ready to listen to me about how worse I had actually gotten.

My mood did a 180. I might have had a little spring in my step leaving his office that day. For the first time since my diagnosis, I felt like I was, without any doubt, making the correct decision. While I was still unsure if Kesimpta was the right answer, I knew stopping Ocrevus was.

Now, it was time to dive head-first into researching my new medication. Every free second of my day was dedicated to researching Kesimpta. I searched hashtags on Twitter and Instagram and joined Kesimpta groups on Facebook. Most of the reviews seemed ho-hum to pretty great. Other than the expected sickness from the loading doses, there were few to no reports regarding the medicine making people worse. That was promising in itself. Unlike Ocrevus, there did not seem to be claims from people that Kesimpta was a miracle drug. No one had gotten up from their wheelchair immediately after an injection of Kesimpta and gone for the longest walk since their diagnosis thirty years ago. No one had miraculously set their cane to the side and never needed it again. Some people said they felt they had more energy and others said they increased their walking by a short distance, usually a quarter of a mile or so. So far, the biggest difference I could see between the two was that what people were saying about Kesimpta seemed to be more realistic.

I was getting more and more comfortable with the idea of Kesimpta. The side effects seemed mild for most people and their follow-up MRIs showed promise. So, of course, this would be about the time my insurance company called and left a voicemail stating they were denying the medication. I was indifferent. My insurance was suggesting Copaxone instead. It has been around for years and, as far as MS meds go, it has minimal side effects. More importantly for them, it was cheaper.

I did nothing. That is how I handle most things these days. I am not sure if it is a lack of caring or a direct symptom of brain damage from MS, but making decisions frustrates me to no end. I do not have the capability to focus my energy on one thing for that long. I had made a decision about Kesimpta, I did not want to have to start over and make a different one.

Luckily, my specialty pharmacy called and nudged me into action. They had spoken to my insurance for me. They would cover Kesimpta but I needed to do a few things. The first thing I needed to do was sign up for the Kesimpta Access Card which is their zero-dollar co-pay program. There was an option as I was submitting my forms to join the Alongside Kesimpta program. This assigns you a personal coordinator to walk you through all things Kesimpta. I opted out of the program. My specialty pharmacy is amazing and I knew I would get all the support I needed from them.

Nevertheless, it appears I was still somehow enrolled in the program. Within an hour I received three emails, one phone call, and two text messages. I am not complaining. All the information I received was very informative and in no way pushy or intrusive. Diane, my coordinator, was incredibly caring and answered every question. Within the next hour, a pharmacist called. We work down the hall from one another and I was immediately in his cubicle with an injection training pen in hand. He answered a lot of questions and provided a ton of information. He told me a pharmacist would call every week during my loading doses to check in on me, and then I would hear from them once a month. We arranged for me to be able to pick up the medication at the pharmacy in the building where I work. Everything was going smoothly until the actual day of my first injection.

I had been looking forward to it all day. I was anxious at work and ready to be home so I could start. However, the closer the injection time got, the worse I started feeling about it. I went home and walked the dog as long as my legs would let me. I cleaned everything. I cooked. I did laundry. I cried. I did everything but the injection. I can’t tell you why I was dreading it so bad. It was not the idea of the needle. I’m fine with that. I think I was afraid of Kesimpta not working either. I think I was even more afraid it would make me worse since that was my experience with disease-modifying therapies so far.

Nevertheless, I eventually did the injection. I had been nervous about screwing it up, but the self-injector is pretty foolproof. An hour later I was in bed and snoozing comfortably. Hopefully, now that the first one is over with I will not be so apprehensive about the next. I will update you on how the loading doses go soon.