In July, my neurologist told me to look into a new injectable called Kesimpta. It would be approved in September by the FDA. He was excited, as he said it was very similar to the infusion of Ocrevus but in a shot once a month.
I was like, “Ummm, ok sure, but I’m not going back on injections. Plus I am still pretty scared of needles.” He said that was fine, it was my choice, but he really liked the data coming out behind this new medication and he had been following the trial since it was first started.
I’ve had Multiple Sclerosis for a little over 8 years now. I started on Copaxone. It was the only medication my private insurance would start me on in 2012, even though my Multiple Sclerosis was presenting as pretty serious. On Copaxone, I got huge, burning welts but worst of all my M.S. continued to progress.
After 6 months, I was switched to Avonex. I hated that injector. I had such bad hand strength that my hubs had to administer the shot for me. It hurt very bad when the needle went into my skin. I had less side effects from the shots themselves, but again, I had more disease progression. Next I went to Gilenya. I was so excited to finally be able to take a pill. Yes, one more pill in my daily intake, but no more shots! Gilenya worked great until it suddenly didn’t and I was admitted to the hospital with no feeling from my collarbone’s to my toes. By 2018, my disease had progressed into my spine too. I was started on Ocrevus in October and it has worked great for 2 years. Yes, I have to go to the infusion center twice a year for about 6 hours but it’s not really an issue. I always slept through my infusion. (Or, watch HGTV. Who else only watches that channel at hospitals??)
I had another appointment with my neurologist in September. We discussed Kesimpta again. I told him I really just felt like I wanted to stay on Ocrevus. It was working well. It was no big deal twice a year. It wasn’t a needle.
He told me whatever I wanted to do was fine and he would support it but he said in a Pandemic, he would feel better from a medical standpoint, if I was on a treatment that would only blow up my immune system a month or so at a time and not for six months at a time. He also said, if I switched to Kesimpta, he would feel better about me leaving the house to go back out in society.
I am an outgoing person. I need adult interaction. After 6 months confined to the safety of my house per his advice, this was a big, juicy carrot he was dangling. So I said, let’s compromise; I make the switch to Kesimpta with the knowledge that once the pandemic ends, I’d be switched back to Ocrevus. He agreed.
I want to be very clear. I trust my neurologist. He is a MS Specialist. I truly feel like he is a player on my team, not the coach.
He filled out the paperwork while we finished up my telehealth appointment. The next day, I was contacted by my personal support specialist (Customer Service) from Novartis (the drug manufacturer). She explained that they would submit everything to my insurance and would follow up in the next few days regarding my copay and setting up the delivery with the specialty pharmacy. Again, it was super fast. She called the next day to let me know everything was good to go. She said the specialty pharmacy would be in touch about my delivery and my personal coordinator (Nurse Practitioner Representative) would be in touch to help me as I started on the drug.
It got setup to be delivered very quickly. My personal coordinator called and introduced herself. I didn’t have very many questions for her. She sent out a training pen and instructions.
The training pen was very helpful. This is injector is the easiest one I have ever used. You simply push the injector into your arm, thigh or belly. You wait until you hear a click and you are done. It takes about 6 seconds from start to finish. It’s not even enough time to say “Ow!”
After my Ocrevus infusion, I would have a headache the next day as my only side effect. Nothing that a pain reliever couldn’t solve. (I will say that at about month 4 after my infusion, I would start feeling more fatigued and cognitive issues would be more present. It would be 2 months until I could get my infusion. Some patients refer to this time on Ocrevus as “Crap Gap.”)
I’ve had 2 doses now of Kesimpta. I have no side effects at all. So far, I haven’t felt anything that I would compare as Crap Gap. If things continue like this, I don’t for see me going back to Ocrevus. Kesimpta it just so simple and easy!
Actually, the only “complaint” I have about Kesimpta, is how often (my very nice and knowledgeable), personal coordinator calls to check in on me. I am at home with 2 kids in school and it’s not always easy to pick up her calls. I do think this service would be very helpful to newly diagnosed patients who have a ton of questions. The last time she called, I told her that I have her number saved and will call if I have a question. I really do appreciate this level of customer service, I just don’t personally have a need for it at this time.
So here’s to hoping Kesimpta, works it magic and my disease doesn’t progress!
MSfit Momma 