My last dose of Kesimpta was on March 10th. After suffering multiple viral and respiratory infections, I decided to skip my April injection. I was miserable and had been for a very long time. There was no need to contact my pharmacist or neurologist to ask if they approved of my decision. Nothing anyone could say would convince me to stick that needle in my body ever again.

I still found myself anxious as my injection date approached. Would I regret my decision? Should I stick it out for one more month? Should I speak with my doctor first? As it turns out, on April 7th, the day I was due for my next dose, I was diagnosed with pneumonia. I had no more doubts after that.

I started Kesimpta on October 21, 2022. In the span of five months that I was on it, I was sick more often than I was healthy. Within a week of my first injection, I developed a cough. I did not feel ill. I just had this constant tickle in my throat. The type of tickle that typically signals the start of something worse. Within the first month, by November 20th, I developed my first upper respiratory infection. It was bad. I sought medical treatment after the first week but the disease raged on. Three weeks later around mid-December, I finally felt some relief, though, my chronic cough continued.

I coughed my way through January and February but never fell seriously ill. Then, on March 3rd, I became symptomatic with Covid. I was grateful for my vaccinations. My second bout with the virus lasted less than two weeks. I completely recovered in time for the vacation I had planned for my mother and myself. I felt good as we boarded a bus and crossed the border into Mexico.

I did not feel so good shortly after we returned home. By March 24th I succumbed to another respiratory infection. I flip-flopped on calling my doctor. I would start to feel better, then decline just as fast. On April 5th my temperature peaked over 101 degrees. On April 6th I could not get it back down to normal with medication. Once again I sought medical care. On April 7th I was diagnosed with pneumonia and given antibiotics.

The following week and a half was a roller coaster. I would feel better, then worse. I would not use any medicine one day, then drink an entire bottle of cough syrup the next. By April 23rd I had another low-grade fever. Three days later I was back in the doctor’s office.

I am currently on my second round of antibiotics in less than a month. The prescription cough syrup does not do much to help. I am finally starting to sleep better through the night, at least.

I was sick with pneumonia when I had my six-month follow-up with my neurologist. The appointment was to discuss how I was doing on Kesimpta. He looked at me with concern as I explained to him between coughs why I had skipped my April injection. I partly expected to be reprimanded for coming off my medication without discussing it with him first. He did no such thing. He agreed with my decision and immediately started suggesting new medications. He specifically felt I should start Mayzent or Mavenclad. I told him I would consider both options but that I was also interested in Tysabri. I saw a slight smirk cross his face at the mention of it. He assured me that was my imagination and that Tysabri was an acceptable choice. With that, he called my pharmacist into the exam room with us.

All prescription drugs come with side effects. The side effects of most MS medications tend to be frightening, possibly even deadly. Deciding between the risks of complications from the medicine versus the risks of complications from the disease is not as clear-cut for MS as it is with some other conditions. What I do know is that the statistics of what happens to people who leave their MS untreated are enough to make me risk the medicine. It is not a choice I make lightly, or confidently. I heavily researched Ocrevus and Kesimpta. In the end, neither one worked for me.

I had high hopes for Kesimpta. I really thought it would be the one. It was easy to simply walk to the pharmacy down the hall at work and pick up. I would tuck it in the fridge until the end of the week. On Friday, I would take five minutes out of my day to do the injection. Then repeat in four weeks. Other than the constant infections, I had no side effects or injection reactions.

I cannot attest to whether it eased any of my symptoms or stopped the progression. Having an infection in the body tends to exacerbate MS symptoms. My MS has been highly active since starting Kesimpta. My mobility has suffered greatly and I struggle to do anything with my right arm. I do feel, and greatly hope, these are just pseudo-flares due to being sick. As the antibiotics do their job, I can feel a slight return to normalcy.

I would not discourage anyone from trying it because of my experience. It is at least easy to stop if issues do arise. My advice would be to listen to your body. Being sick for five months is awful. Add in flaring MS and life becomes unbearable. I found myself in a very dark place. My depression and anxiety were elevated to levels I had not felt since my diagnosis. I was taking gigantic leaps backward in steps I had made forward with my physical and mental health. You do not need to tough it out. If your body is whispering to you that something is wrong, listen to it. Do not wait for it to start screaming.