One year ago today while my coworkers encouraged (threatened) from the background, I gave myself my first Kesimpta dose.
What is Kesimpta?
According to Kesimpta's website,
KESIMPTA is an injection just under the skin so it can target the B cells thought to play a role in relapsing MS. Its precise delivery is believed to allow the treatment to target B cells in the lymph nodes. This targeted approach to the lymph nodes is thought to limit the impact on other B cells your body needs to maintain immune function.
Kesimpta is given as a once a month injection. Super quick--Super easy.
Why did I choose Kesimpta?
At the time I'd started Kesimpta, I'd already tried two different DMT's (Disease Modifying Therapy), Tecfidera and Vumerity. I had to stop taking Vumerity because the cog fog* was aboslutely insane! I was exhausted all the time, couldn't remember anything, could barely function--I absolutely could NOT THINK while I was taking it! Thankfully, a few days after I stopped Vumerity, the fog started to clear, but I was still left with the problem of finding a new DMT.
I began researching the different DMT's. More specifically, I began to research HOW they worked. A lot of them interested me with their promises of great results, but the risks outweighed the benefits, in my opinion. Then, I started reading about a group of DMT's called B-cell Therapies. The drugs in this are Tysabri, Ocrevus, and Kesimpta.
When I was first diagnosed, one of the DMT's my neurologist had reccommended was Tysabri. However, my JCV numbers were too high for her to feel comfortable prescribing it, and I'm not a fan of my brain melting sooo....pass! I gave Kesimpta a look. The first thing I noticed was that it was FDA approved August 2020, only one year earlier. I noped that one out the door too. I absolutely was not comfortable with something that had only been on the market one year. That left Ocrevus.
Ocrevus looked good at first. Only one infusion every six months. Less risk of brain melting than other meds. A good group of loyal patients who say it changed their lives. And it had been around four years. I was feeling pretty good about it. Until I looked at some cons. Two things in particular stood out. First, the idea of getting six months worth of drugs pumped into my system in one day did not thrill me. Second, the dreaded CRAP GAP. I couldn't afford to feel miserable for a month or longer in between infusions. Disappointed and a little discouraged, I turned back to Kesimpta.
The first thing I did was join the Kesimpta - MS Group on Facebook. I started reading about people's experiences. How they thought they were doing. What their experience was switching to Kesimpta after other meds. How they felt on Kesimpta vs. previous DMT's. The responses surprised me. Other DMT groups were filled with a good mix of lovers, haters, and everything in between. Side effect management was a huge topic. So was benefits vs. risk. I didn't find hardly any of those stories in the Kesimpta group.
The overall feeling toward Kesimpta was positive, with the majority of people saying it was the best thing that's ever happened to them. Not that it was all roses, there was some talk about side effects. But most of those posts revolved around the first 1-3 doses. After the initial doses, most people said side effects were non-existent. The more I read and spoke to these people about Kesimpta, the more comfortable I became with the idea of trying it myself.
I brought the idea up to my neurologist and she immediately agreed. She sent me the paperwork to fill out, sent it off, and within a week, I was scheduling my inital shipments. (Side Note: The entire process with Novartis was much faster than my experience with Biogen.)
*Cog Fog: Cognitve Fog, Brain Fog. A feeling of heaviness or fuzziness in your head that impairs your ability to think and function.
What was your first reaction to Kesimpta?
I took my first dose of Kesimpta on this day, one year ago. I chose to do it at work. It was a place I was comfortable with and if I had any kind of reaction, I had plenty of healthcare professionsals there to save my life! It was about 4:00pm. All but one or two of our patients had left. I sat myself in a chair at the front of the clinic, hiked my skirt up, and....absolutely freaked out.
Not surprising. There was a reason I chose to do it at work rather than at home or my doctor's office. I hate shots. I 100% prefer to be the one sticking the needle in people than being the one stuck. I don't mind blood. I don't mind needles. But when it's my blood and the needle is coming for me? That's a different story! Eventually, I cleaned the injection site and popped the top off the pen. And I held it above my thigh for like an eternity with my coworkers yelling encouragement (threats) to me from their areas as they cleaned up for the day.
There were a lot of false starts. Finally, from the back of the floor, my manager said, I'm gonna wipe down this last machine, and if you haven't done it by the time I get up there, I'm jamming that into your leg!" Well, apparently, that was all the motivation I needed! I pressed that pen down, listened for the clicks, watched the slider turn green, and rewarded myself with a bandaid as my corworkers cheered. Yay me! I'd given myself my first injection! And I'm so thankful for the support of my coworkers that day. I can't imagine that first shot going any other way!
By the time I got home and had all the creatures taken care of, I was starting to feel the effects. I had a headache and was getting tired and achy. I had planned an evening of nothing and it was time to get started. I put Legally Blonde on the bedroom TV and settled in. When the movie finished, my head was hurting to the point I couldn't move without another wave of pain washing over me. I choked down more Tylenol and went to bed. But sleep was not to come.
It was about 9:00pm. Everything hurt. My body felt like it was on fire. I couldn't move because even the slightest shift made the torment worse. I had no energy. I was in so much pain, I couldn't even cry. I had no choice but to lie there like a lump in my agony. I may have wished for death. If hell is anything like the torture of that night, y'all better get right with Jesus! I finally fell into a blissful, unaware sleep. When I woke up, I still felt bad, but no longer like death. I could move and think again. The clock read 11:00pm. So I had been in agony for about two hours before it let up.
Thankfully, by the next morning, the only thing remaining was fatigue. I rested over the weekend was feeling pretty good by Monday morning. And the next two doses were much better. They left me tired, but there was no sign of the horrors of that first night.
How has your first year of Kesimpta been?
In short, I love it! I have absolutely zero side effects. And I'm someone who can find side effects in anything, (I once had every single side effect Google listed for one medication!) The monthly injections are so easy! They almost never hurt, and I"ve only bruised myself once. I must have hit a capillary that day, there was quite a bit of bleeding. I have more energy than I did on my other DMT's. Absolutely no med related cog fog. And no crap gap.
Sometimes if I'm stressed or expanding more mental energy than normal, I can tell that it's almost time for my next injection because I get tired quicker. But that's a rare occurrence and hasn't happened once since I left my high stress job in March. I don't have to worry about remembering to take something daily. I'm not throwing up like I was on Tecfidera. I'm not struggling to perform activities of daily living like I was on Vumerity. And best of all, NO NEW LESIONS! I did have a stress-related flare last spring, but I've had no relapses or progression in the last year. I am in love with this drug. Kesimpta is definitely the best thing that's ever happened to my MS since diagnosis.
Conclusion
I'm sitting here writing this with my fifteenth dose on the counter next to me. I've changed insurance as I've changed jobs, and it's taking forever to get my prescription approved. Every month, I have to call Alongside to set up a complimentary shipment. It's easy enough, and the reps are great to work with. But if I forget, well....then it's late. I was annoyed that this injection was going to be four days late. Then I realized that exactly one year ago today, I gave myself my first injection. I love the poetry in that.
This year was better than last year, and Kesimpta was a big part. But I also beleive that my attitude toward my illness has a lot to do with that as well. I've stopped looking at it as something that happened TO me. Instead, I guess I'm now looking at like an annoying pet I adopted and am now stuck with despite their bad unfixable habits. (I'm talking about you DEAN!) Although I will say I love that stupid cat a lot more than I love my MS! But anyway. I can either be upset and depressed about the circumstances, or I can find ways to enjoy life in spite of it. My life looks different than it did two years ago. But I'm still working toward a lot of the same things, just in different ways.
I learn. I adapt. I live. Because the alternative is to be miserable. And who wants that?
Dean pic because I outed him for having bad habits! Show him some love!
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