November 20th means I am officially six months out from my last infusion of Ocrevus. It is a day I have been looking forward to for a while now. One of the things I did not consider when starting the drug was how long it would be in my system. I was sold on promises of stopping multiple sclerosis dead in its tracks. I was given hope of my leg strength returning and being able to ride my bike, hike, and run like I used to. The idea of only receiving treatment every six months was being sold as such a positive, I never for a second considered it to be one of the hugely detrimental things about the medication.

A lot of the most effective and proven MS medications out there are simply inconvenient for a lot of people’s lifestyles. Some involve taking multiple pills a day, and some require the person to self-inject at home (sometimes up to three times a week) or go to an infusion center for at least an hour every month. Only needing to go to an infusion center every six months becomes a pretty good selling point itself. I thought it sounded great. To be honest, I looked forward to infusion day. I got to take an entire day off work, sit back in a cozy recliner, eat snacks, watch some Netflix, and get caught up on reading. Minus the nurse coming in every hour to check my vitals and increase the infusion rate, it was prime me time.

What I did not consider when choosing to start Ocrevus was how long the medication would be affecting my body. One Ocrevus infusion can affect your immune system “for a prolonged and variable period of time ranging from six months to more than twelve months“. I never considered the medication would not work for me. I especially never considered it could have a negative impact on my health. But that is exactly what happened. By the time I figured out the thing that was making me worse was my medication, I was three months out from my last infusion. I wanted it out of my system. I wanted whatever it was doing to me to stop, but there was nothing to be done about it. I would have three official months left to ride it out, possibly longer. That gave me a feeling of helplessness like I have never known in my life. To know I had this pulsing through me, damaging me from the inside out, and there was absolutely nothing I could do but hope to be okay.

Needless to say, November 20th had been on my radar for months. I have no idea how long the effects of Ocrevus will continue. Instead of twiddling my thumbs and waiting to find out, I have already moved on to the next chapter. I did my first monthly injection of Kesimpta on November 18th. So far, so good.

I started my loading doses six weeks ago. In the grand scheme of things, it is too soon to give a report on how well the medication is working for or against me. I made sure to do a lot more homework this time before having any more needles stuck in my body. So many people were reporting increased energy on Kesimpta. People who were crippled by fatigue were getting up the next morning after their injection and walking around the block. No miracles, just a little more get up and go. That sounded so good. I wanted that for me. Others were reporting sickness from the injection but feeling better within twenty-four hours or so.

I got neither. For the most part, I did not feel much change with the injection. I would have unpredictable waves of nausea, but they would pass as quickly as they arrived. I have done each injection on a Friday evening so I would have Saturday from work to rest. One Saturday, I did feel fine enough to do a workout. I will not say I regretted it, but I was sickly for about a half hour afterward. By Sunday, all is back to normal.

My experience with Ocrevus was that I could feel myself in a steady decline. It was subtle but enough to feel the cumulative effects over time. Every week I was the slightest bit weaker. Every week I was struggling to move my legs just a little bit more. It was never a huge decline at once, but with week after week of declining health, it was really starting to add up. My discussion with my neurologist was that we needed to focus on stopping my symptoms from progressing. He felt stopping Ocrevus and switching to Kesimpta would do the trick. I hope, and feel, we are on the right track.

I cannot say I have seen any improvements in my health since starting Kesimpta. What I can attest to is that I no longer feel I am spiraling slowly out of control like I was on Ocrevus. For the first time in nearly two years, I do not feel my symptoms progressing. I want my miracle. I want to get better. But this is still a win, and I will take what I can get.

As for side effects, I am unsure. Physically I do not have anything to report. The injections are simple and leave no soreness or mark. I do not premedicate with Tylenol or Benadryl as others do, and I am yet to have any sort of reaction. While I have had no physical symptoms to report due to starting Kesimpta, I can say I have had a severe change in mood.

My mood changes happened at the same time I started the injections. I cannot say the medication is responsible and it may simply be a coincidence. What I have experienced in the last four to five weeks is extreme anger. I am so inexplicably mad and often at nothing in particular. It is simply a feeling short of rage that is constantly lingering. Any minor thing will send me into a fit of throwing punches in the air or screaming into the inside of my bent elbow. The same behaviors I did out of depression and anxiety before, I am doing out of anger. They are no longer tears of sadness, but tears of rage. I wonder if this is the natural moving back and forth through the stages of grief that are expected with major life changes. Time will most likely tell, but in the meantime, I am sure my therapist will have some helpful input.

Have you had any mood changes on your MS medications? I would love to hear about it.