I have been sick for a long time now. If you have read my prior posts, you know it started with Kesimpta. To be sure, I do not think Kesimpta is a bad drug. It just was not for me. If you have read my prior posts, you also know the psychological and emotional turmoil I went through in coming to terms with starting Mavenclad. It was not my first choice. It was not my second choice. I did not even consider it an option after reading the brochure the pharmacist handed me at my neurologist appointment.

Nevertheless, I decided to move forward with it. I did hashtag searches on every social media outlet. I consumed as much information as possible. I joined Facebook groups and reached out to others. I asked for people to only share their positive experiences with me. I did everything to convince myself that Mavenclad was sent by the good Lord himself to fix me.

I was not blind to the not-so-good things people were saying. Some had it rougher than others. Most everyone experienced increased levels of fatigue a few months out after starting treatment. Most everyone also had headaches and nausea while taking the pills. For the most part, side effects were minimal especially compared to those that come with a lot of other multiple sclerosis medications. As for the side effects that did occur, almost everyone was able to work through them and carry on with their daily activities.

One of the things that stuck out most about Mavenclad was that no one seemed to be experiencing miracles from it. Whereas, with some DMTs people report going into their first infusion in a wheelchair and six months later walking into their next appointment, people on Mavenclad simply said the therapy stopped the progression. That is all it is meant to do. That is all any DMT is meant to do. It was refreshing to not have any false hopes.

By this point, I decided to go all in. I knew there was potential for the next two years of my life to be less than good. I was looking at the bigger picture. I was getting excited about it. If the therapy worked as intended, I would potentially spend years after completing Mavenclad without taking another DMT. I was ecstatic at the idea of being drug-free. It would be worth whatever I needed to go through to get to that point. I emailed my pharmacist. The email said, “Mavenclad- final answer”. Then I waited for him to call with the next steps.

I had to do more blood work. I actually found myself anxious they would find something that would prevent me from starting treatment. The tides really had turned. I was all in.

In the meantime, I visited my primary care provider. I was concerned since I still had a cough. She examined me and listened to my lungs. She said the crackles were gone. She did not even hear any wheezing. That, along with the fact that I had completed two rounds of antibiotics and a round of steroids, made her confident in giving me permission to proceed with treatment. She prescribed an inhaled steroid to help with the lingering cough. That was a Friday. The following Monday I was to start Mavenclad.

Monday came and so did another fever. I struggled to navigate the hallways at work in an upright position. I swooned from side to side as my legs weakened from my rising temperature. I was miserable. My temp was 99.8. I felt awful and my chronic cough had significantly worsened throughout the day. There was no way I was starting treatment in that condition. I took a fever reducer and went to bed.

The next morning I was relieved to step out of bed with only the typical limp I am so accustomed to. My fever was gone. I felt fine. I took a thermometer to work and checked my temperature every hour. Whatever had afflicted me the previous day was no longer an issue. I was still uncomfortable starting Mavneclad so soon after feeling ill. I decided if my fever stayed at bay the following day, then I would begin that evening.

Wednesday morning I was still symptom-free other than the cough I have had for months now. I set a time of 6PM to take my first pill. As the time approached, the anxiety escalated. I cried. I panicked. Then, I sucked it up and swallowed the pill right on time. I had a six-week follow-up with my neurologist the next morning.

I coughed as we talked. I took out a throat lozenge and sipped my warm tea. This has been my life for months. I thought nothing of it. He was taken aback even though he had seen me in the same exact condition six weeks earlier. I suppose that was the issue though. After six weeks, he expected to see me well. I was not. While I do not necessarily feel ill, coughing nonstop night and day for months had left me feeling and looking exhausted.

He told me to stop Mavenclad immediately. My jaw dropped. Now I was the one taken aback. Mavenclad was his suggestion. We had sat in that very same exam room six weeks earlier as he told me all the reasons I needed to be on it. My primary care physician had given the go-ahead. My blood work had given the all-clear. I was doing exactly what he had wanted me to do. Now, he was the one backpedaling. I felt a flood of emotions, mostly anger.

He had not expected to see me still sick. He was concerned and astonished. One of the most common side effects of Kesimpta is upper respiratory infections. It is also one of the main side effects of Mavenclad. Having had at least four infections in five months on Kesimpta and still being ill two months after stopping injections, he was worried I was to repeat the same fate on Mavenclad. However, given the way Mavenclad is administered, stopping would not be as simple. In his words, if the same infections were to repeat on Mavenclad there would be a chance I would not recover at all. The gravity of his remark did not really sink in until later. I could die of infection if I continued treatment.

So, here I am, off of therapy and back at square one once again.