I administered my first loading dose of Kesimpta on October 21, 2022. That was followed by two more loading doses. All injections were one week apart. After taking a week off, I did my first monthly injection on November 18. My second monthly injection was four weeks later on December 16. This evening will be my third monthly dose.

I try not to get my hopes up. My initial consultation with my pharmacist left me excited for things to possibly come, though. First, he determined my baseline. If you have MS, you know what I am talking about. Every new doctor and medicine comes with a series of questions to see how you are doing in all aspects of your life. They need to know your mood and if you would rate yourself as overall happy or sad. You get to tell yet another person you just met five minutes ago if you have trouble peeing or pooing. The questions continue to cover all issues from mobility, fatigue, muscle weakness, cognitive dysfunction, and pain level. My pharmacist, however, got a little more personal and asked about my hobbies. He wanted to know about the things I enjoyed doing that I could no longer do because of multiple sclerosis. We discussed hiking, cycling, and extended neighborhood walks. He very bluntly stated that it should not be a problem to get me back to doing what I love. Your heart skips a beat when you hear that. Even though you have read all about the medication and know it is quite unlikely it will do any such thing. You still hope, even when you know better.

I was not sure what to expect after my first injection. I administered the shot late Friday evening. I wanted to have Saturday and Sunday to recover in case there were adverse reactions. I went to bed that night and woke up the next morning feeling fine. As the morning turned into afternoon, I began having waves of nausea. Nothing major. Just enough to remind me that there was a new medication coursing through my body. By the time I returned to work on Monday morning, all was well.

I have had the same experience with every shot, including the weekly loading doses and the monthly shots. It is tolerable. I have learned it is more tolerable if I rest. After my last monthly injection, I felt well enough to do a thirty-minute workout. Immediately after, I was hit with waves of nausea. Again, it was not significant. I would rate it as more of an annoyance.

What I was most looking forward to was the increase in energy I had seen so many others report to have. I had been closely following others on social media as they started their Kesimpta journey. Many were saying the biggest change they noticed was a decrease in fatigue. People were getting spurts of energy like they had not felt since before their diagnosis. I wanted that. Unfortunately, it was not in the cards for me. I never got the noticeable increase in energy that was driving other people with MS out of their homes to go for long walks and bike rides. I will say I have experienced a decrease in fatigue. It has been so negligible, though, that I question if that actually is the case.

Another thing several people reported with Kesimpta was an increase in infections. That was also a concern with Ocrevus, but not something I ever had an issue with. I felt the biggest reason people were reporting having to discontinue Kesimpta was that they were always sick, either with a viral type infection or with neverending bladder infections and UTIs.

Almost immediately after my first monthly injection, I became ill. It was a simple cold, but it would not get better. I coughed and had a low-grade fever for three and a half weeks. I sought medical attention at the urgent treatment center. She diagnosed me with an upper respiratory infection. I was miserable. Adding to the physical misery was the mental torment of thinking this was going to be my life from now on. I will forever be on immunosuppressants and spend my entire life not only sick with multiple sclerosis, but also with every virus that got within six feet of me. My depression and anxiety were through the roof.

I was able to eventually fight off the virus and have not been ill since. I have also been extra cautious. I work in healthcare and everyone who enters my facility is still required to wear a mask. I sense we will be coming out of them soon. It makes my heart race to think about being in a small exam room again with sick people who are not required to wear a mask. We will see what happens.

I was in a downward spiral the entire time I was on Ocrevus. Every week I would feel my legs worsening. It was so subtle, it was difficult to see. Standing back and looking at the bigger picture, however, it is obvious that my health took a significant plunge in the short time I was receiving infusions. I do not feel that with Kesimpta. At this moment, I can not say that Kesimpta is doing anything to improve my mobility. I can say that I feel like the worsening has halted or at least slowed significantly. I know the effects of Ocrevus could be long-lasting. Time will tell what happens when it has finally run its course.

I do feel my right arm and hand weakness worsening. I am slowly learning to do almost everything with my left hand. I am slowly getting accustomed to brushing my hair and teeth left-handed. I am learning to hold utensils with my left hand. Currently, the frustrations of being uncoordinated with my left hand are easier to deal with than the frustrations of trying to use my failing right hand. I am learning to adapt, however, most tasks that require the use of both hands still leave me angry. I have to sit and focus to tie my shoes. It is impossible on most days to pull my hair back and getting dressed takes every ounce of energy I have. I have been attempting home exercises. My hope was that Kesimpta would provide some help, but that is not the case. I will be speaking with my primary care doctor about physical therapy for my failing hand.

I am three months into my Kesimpta journey. I have been wanting to update everyone sooner, but, the truth is, there has not really been that much to report. I suppose, though, in the world of MS that is a good thing.

Cover image: https://www.multivu.com/players/English/8706051-novartis-kesimpta-fda-approval/