Starting My New Treatment, Kesimpta

I started my new disease-modifying therapy, Kesimpta, in August. I have been doing my best to learn all about it and I am sure there is still plenty to learn and understand. I have also been trying to learn all the tips and tricks to make sure I have minimal side effects.

About Ocrevus and Kesimpta

Most people don’t know much about the disease modifying-therapy options available, but if you have heard of one it would probably be Ocrevus. It is advertised on television and it has become extremely popular in the last few years. It was approved by the FDA in 2017 and it seems to be a high-efficacy treatment. Ocrevus is a twice-a-year infusion that targets your B-cells and works to deplete them. 

Kesimpta is even newer than Ocrevus, hitting the market in 2020 and it also targets your B-cells. Instead of twice-a-year infusions, Kesimpta is a once-a-month injection at home, except for the first month where you have to take several “loading doses” over the course of three weeks. 

One of the easiest explanations I have found to learn more about B-cell depletion and how and why these two treatments work so well is through WebMD – https://www.webmd.com/multiple-sclerosis/cm/b-cell-therapy-for-ms. Both Kesimpta and Ocrevus were developed from a cancer drug treatment, but they are not actually chemo-therapy. They both wipe out half of your immune system making you more susceptible to infections, pneumonia, and other illnesses. 

Starting Kesimpta

I joined a group on Facebook specific to this treatment that has over 5,000 members and has proved to be one of the best resources for both this treatment and connecting with others with Multiple Sclerosis. 

I quickly learned that before starting my first loading dose it was important to hydrate. I did my best to drink close to 100 ounces of water a day for the week leading up to my first dose. I also learned that taking Tylenol and Benadryl 30 minutes before my first dose would help with any symptoms. People recommend taking it in the evening before bed so you sleep off a lot of the side effects and because Benadryl is recommended. Everyone says that the first dose is usually the worst, but really the first month of loading doses can be hard for some people. Usually, once your B-cells are depleted your body adjusts and if anything a lot of people start to notice their MS symptoms get better. I don’t notice/have too many day-to-day symptoms so I don’t expect there to be much change in how I feel.

Loading Doses

After I took my first loading dose I noticed I was incredibly thirsty not long after my injection. And, in the middle of the night, I woke up feeling achy and unsettled. I had to take some more Tylenol and Benadryl to fall back asleep. When I woke up the next day I was thankful it wasn’t worse. Some report that they feel like they have the flu for 24 hours. I was still achy and tired, but at least able to help wake the kids up and feed them. I was moving pretty slow that day and I would say the next day I recognized that I wasn’t quite myself. The whole first week I noticed some things that felt “off” from my normal self, but overall it wasn’t too bad. I had one evening with a bad headache, I had a couple of stomach aches, and other times I just felt “off”. I am still trying to hydrate since I am still working my way on this medication and, in reality, we should all be drinking a lot more water than we normally do. 

I was a bit nervous to give myself the injection because if you remember from my old posts my last injection medication was quite rough. With every injection of Copaxone, I would get massive welts and they would itch and cause sore spots all over my body. Then, my last Copaxone injection I had a terrible reaction. The good news is that Kesimpta barely left a mark. You would never know I had to give myself an injection. No welts, bruises, or marks. It uses an autoinjector and you can’t even see the needle. Now, I don’t mind needles and I might actually prefer to see the needle so I know it is doing what it is supposed to, but the technology to get here from Copaxone is really impressive. I also could barely feel the injection.

In the following two weeks, my loading doses were no big deal. I didn’t really notice too many side effects and I didn’t feel the shot too much. After you get all set up on loading doses, you get one week off before you start your monthly dose. My monthly dose did sting a bit more than the first three shots, but I did it in a different location. The injections can be given in your thighs or stomach if you administer it yourself or you can have someone else do it in the back of your arm. I will probably always do it myself and most likely I will do it in my thighs. I did my first three loading doses in my thighs and in my first month I decided to try in my stomach. My stomach hurt really bad and it took everything in me to not pull the needle out too fast. It is a bit of a trickier location for me personally because you need to avoid stretch marks and my two beautiful babies left me a lot of marks all over my stomach. So, my thighs might be my best bet.

Dreaded Insurance Issues

One of the biggest headaches with starting a new treatment is getting insurance set up. Premera actually has decided to decline to pay for my treatments. My neurologist appealed and they still denied it. It is amazing to me that insurance companies have the ability to decide what medications people can and can’t take. It is pretty messed up actually if you ask me. They are allowed to say since you haven’t tried and failed on Ocrevus, that we won’t pay for your treatment. 

Thankfully, Kesimpta has a program in place that for the first year you can receive the drug completely free. As the end of the first year approaches you are supposed to appeal again to the insurance company and show proof that the treatment is working. I guess supposedly they usually accept it at that point. And, I have been told if not, that Kesimpta will restart the program for me. I am praying that is true because I have heard it is about $7,500 out of pocket. Yikes.

Prayers

If you are following along in my journey and made it this far into my blog post, I would love to ask for you to pray for my body and my treatment. Please pray that my body responds well to this treatment. That I have minimal side effects and that the drug would do what it needs to do to properly protect my nerves from attacking themselves and causing a relapse. Please pray that God would protect my brain and body from any further damage. That a year from now I will have an MRI report with no new lesions and proof that this drug is working. 

And, If you have a prayer request, I would love to walk alongside you too. Please feel free to PM me or comment on my blog about how I might be able to pray for you. 

As always, if this is confusing or you want to ask me more questions, I am not afraid to try to explain it better. I will do my best!