Something I have struggled with since the onset of my disease is the lack of safe and effective medications available for people with multiple sclerosis. I have an endless internal debate where I struggle to decide if I am more afraid of the disease or the medicine used to treat it. In the end, I recall statistics on how quickly disability progresses in those who receive no treatment at all.

At the moment, I am off of my MS meds. It has been two months since my last injection of Kesimpta. I feel better than I have felt in a very long time. I was sick the entire five months I was on the drug. The fatigue from being sick for so long is finally lifting. I am making it into the evening before being crushed by the usual overwhelming tiredness that comes with living with a chronic condition. Two months ago I wobbled with fatigue just getting out of bed. I am currently limping less and walking faster. I am incorporating stairs more and snubbing the elevator when I am able.

There has not been a miracle cure by any means. I still have MS and it is still very prominent in everything I do or attempt to do. It is simply not as bad as it was when I had infection after infection raging in my body for months on end. I have basically reverted back to where I was pre-Kesimpta. I did not realize exactly how sick I had been and how worse my MS had gotten until I came off the drug. It is feeling like this that makes me want to never take another drug again. It is feeling like this that makes me want to go the diet and exercise route. Then I remind myself that I was highly active, exercised constantly, and ate incredibly healthy when my immune system decided to go haywire in the first place. A healthy lifestyle is still important to me, but I obviously need more to combat the disability this disease is trying so hard to impose on me.

I am finally free of any upper respiratory infections. It took lots of antibiotics to get here, but I feel better and it shows in each step I take. I do not want to give this feeling up. I do not want to go back to the overwhelming fatigue that comes with being sick and having MS. I do not want to go back to bouncing off the hallway walls at work because I am too tired to walk straight. Yet, here I am, getting ready to start a new medication and purposely put myself right back where I just came from. That is a decision that is weighing very heavily on me, but now is the time to try and look and the bigger picture. At least that is what I keep telling myself.

Kesimpta was a failure. The clock is ticking. I need to start a new DMT (disease-modifying therapy) as soon as possible. The options suggested to me by my neurologist were Mavenclad and Mayzent. My suggestion to him was Tysabri. I also wanted more information on Copaxone. I had a lot to think about.

My interest in Tysabri and Copaxone was peaked by the length of time they have been on the market. The more questions I asked, the more I discovered that most people consider that a bad thing. I understand. There has been a lot of research and seemingly great strides forward to understanding how and why multiple sclerosis works the way it does since these drugs hit the market years ago. My brain was simply telling me that if they have been on the market for decades (Tysabri was FDA approved in November 2004, and Copaxone in August 1996) they must be doing something right.

My biggest draw to Copaxone was its safety record. If you ask Google what the safest MS medication is on the market, the result is Copaxone. It has the least amount of side effects and the best safety record around. However, ask Google what the least effective MS medication is and Copaxone will again be at the top of your search list. I decided it was at least worth speaking to my pharmacist about. His explanation of the drug was that it is basically synthetic myelin injected into the body. The hope is that the immune system will attack this instead of the person’s own myelin sheath. It works less than half of the time. He went on to say, that as active as my disease is and with how quickly I have progressed, I would most likely not see much, if any, benefit from Copaxone. With that conversation, I scratched it off my list.

My choices were narrowed down to Tysabri, Mavenclad, and Mayzent. As usual, when it comes to my disease, I dove headfirst into research. My experience with the newer drugs, Ocrevus and Kesimpta, left me weary of anything that had been more recently approved by the FDA for treating MS. Even more so, the long list of serious side effects for Mavenclad and Mayzent left me terrified.

The first side effect listed in my Mavenclad brochure was an increased risk of cancer. This was followed by serious infections (TB, Hepatitis B, and C, and PML), liver problems, and heart failure. The first less serious, but most common side effect was upper respiratory infections. The exact reason I had to stop Kesimpta. This was the deciding factor for me. At least with Kesimpta, I could simply stop giving myself injections and give my body a chance for recovery. It would not be that simple with Mavenclad. The dosage for Mavenclad is one or two pills (depending on body weight) per day for five days. Then, a month later, you repeat. This will deplete the number of B and T cells in your body. You will not take another dose of the medication for a year. That is how long the effects last. If I took Mavenclad and had the same reactions as I had with Kesimpta, I would possibly be sick for a year or even longer. I sought the guidance of my pharmacist once again. He agreed this was a legit fear and something I should consider. All I considered was that Mavenclad was not an option.

Mayzent was even more harrowing. Possible side effects to watch out for were slow heart rate, infections, and macular edema. The most common side effects were headaches, high blood pressure, and abnormal liver tests. The further you scroll down the side effects page on their website, the more scary it gets. The site goes on to state breathing problems, swelling and narrowing of the blood vessels in your brain, and skin cancer as other issues that may arise. The thing that really turned me off from Mayzent, however, was the “severe worsening of multiple sclerosis symptoms after stopping Mayzent”.

I had heard of a rebound effect after stopping other MS medications, as well. My neurologist even warned me the clock could be ticking for me since stopping Kesimpta. I had just never seen it so blatantly put as a warning and referred to as a “severe worsening”. I scratched Mayzent off the list.

That left Tysabri. Tysabri has a scary history with PML. PML is a deadly brain infection that can occur in immunocompromised individuals. It is a scary business. I was still drawn to Tysabri, though. Nearly everyone who had experience with the drug raved about how great they felt and the very few side effects they experienced. I wanted in. I educated myself on all things Tysabri and PML. I read studies that were showing it was possible to receive the infusion every six to eight weeks, instead of monthly, without affecting the effectiveness of the medication. This extended interval in dosing also greatly decreased a person’s chance of developing PML. It decreased the chance enough that I was now extremely comfortable in making a decision to email my pharmacist so he could get the blood work going.

A week later I get the results. I tested positive for the JC virus. A virus that a majority of us carry dormant in our bodies. However, being JC-positive and on Tysabri can be a ticking timebomb for PML. I was denied the medication. I was crushed.

This is where I want to say I went back to the drawing board and started researching better options that may not have been mentioned yet. I didn’t. I gave up. I decided on what I thought was the next best thing in a sea of nothing but dismal options. I chose Mavenclad. I chose the drug that was likely going to put me right back in the same miserable spot I had been in for the last five months. I chose Mavenclad because I was sick and tired. I chose Mavenclad because I would rather go ahead and swallow whatever pill my doctor put in front of me rather than continue reading about all the other horrible options.

I chose Mavenclad, because, at that moment, I stopped caring about myself. Hopelessness can be overwhelming with MS. For many of us, our lives have been taken away from us with no chance of ever being the person we were before. Life becomes an endless stream of doctor’s appointments and therapy appointments. Appointments that you go to in the hope of grasping onto and keeping the little bit of you that is left. No matter what you do though, the disease progresses. You get the infusions, you do the injections, and you swallow the pills. You deal with the wretched side effects. All the while the disease continues to worsen. I chose Mavenclad because I no longer thought it made a difference what I chose to do. I would be sick no matter what I did. My disease would worsen no matter what I did. I chose it because I was feeling completely hopeless and just wanted to get on with my life.

With that being said, I reached out to the amazing community of people living with MS and received lots of positive feedback on my choice. Just like that, I am looking forward to starting the next chapter. This is also a short lesson on how MS affects a person’s mood. From the beginning of this post to the end (a few weeks in real life), I went through at least five major mood shifts. That is probably a good topic for another post.

As I write this, I am waiting for the blood work results to say I am able to start Mavenclad. MS medications are a different breed. They should be considered carefully by both yourself and your healthcare team. I am upset that we do not have better options available to us. Hopefully, if and when, I find one that works for me I will have a better opinion of them in general. As for now, the search continues.