I know that there are people with Multiple Sclerosis (MS) starting to find my blog and are curious about my experience with Kesimpta. This blog is going to be more informative for those who have MS and are considering starting Kesimtpa.
One of the most helpful things in my own journey has been to join Facebook groups for those with Multiple Sclerosis to share experiences, ask questions, and feel supported. These groups help me gain more of an understanding of the disease and how it impacts others. It helps me know how others are doing on different disease-modifying therapies and gives me the ability to ask questions. A lot of knowledge that I am sharing in this post is what I have learned from my Kesimpta group on Facebook. It is based on my experience and the experiences of others, and it is not medical advice. Please always trust your own neurologist’s advice first.
Kesimpta is a newer disease-modifying therapy and it can be quite daunting for people to start. To be honest, I feel like all of the disease-modifying therapies are a bit scary to start. They just finished listing off all the long-term and short-term side effects and yet they tell you it is your best bet for a healthy, long life. Really comforting, right?
It seems as if most people feel really well while on Kesimpta. Many people notice symptoms start to improve and MRI results are proving that Kesimpta stops or slows the progression of MS. What is interesting to me about people seeing an improvement in symptoms, is that supposedly no disease-modifying therapy is supposed to improve symptoms at this time. However, there seems to be an undeniable amount of user experience that it does in fact help people feel better. Some people who struggle to walk are finding it easier to walk or exercise. Some people find that they don’t feel quite as much fatigue. Symptom improvement varies, but it is happening.
It also sounds like those who are coming from Ocrevus, a similar B-cell depleting treatment, are able to get rid of or significantly reduce the amount of time of the dreaded “crap gap”. Now, if you are like, what the heck is a crap gap, understand that Ocrevus is a twice-a-year infusion. It gives you a large dose of medication at one time that is supposed to supply your body for months. Many people were noticing several months before their next infusion that they would start to feel crappy. They would get extreme fatigue, may be unable to get out of bed, some really bad symptoms might return, and they would need that medication sooner. Since Kesimpta is taken monthly, it reduces any crap gap to days for people and some people don’t experience it at all.
I feel as if in my Kesimpta group there are two frequently asked questions, the first being, I was newly diagnosed or my symptoms aren’t that bad, so do you think I really should start Kesimpta or a Disease Modifying Therapy at all? The second question is, how bad and what are the side effects of Kesimpta?
To answer the first question, why should I start a DMT or Kesimpta if I don’t have any symptoms, I am newly diagnosed, and my MS isn’t that bad?
First of all, MS is getting diagnosed earlier now than it used to be. The good part of that is that the earlier they diagnose, the earlier you can get on a disease-modifying therapy and fight the disease before any permanent damage to your nerves happens. I can’t tell you how many people I have heard from that either didn’t start a DMT because they weren’t bad and a couple of years later they started showing symptoms and relapses and the disease attacked hard and fast. Secondly, I believe a lot of neurologists are jumping to Ocrevus or Kesimpta right away because it stops the disease fast and as of now, it is safe to be on for a long period of time. If they can find something that stops disease progression, they want to do it. My own neurologist told me that the first 5 years of your disease are crucial in treating and stopping any major progression. So, for me, even though I experience a mild form of this disease, I am treating it as if my life depended on it. I want to run and play with my kids, I want to jump on the trampoline with them, and I want to golf for as long as my body will allow me. I don’t want this disease to slow me down if I can help it.
As for the second question, surprisingly the side effects for Kesimpta are not bad. The first three loading doses can be rough, but the longer you stay on Kesimpta, the more your body will adjust to the treatment. I personally only struggled the day after my first injection. I thankfully lined up child care and took it easy, slept a lot, and stayed hydrated. The only other side effect I noticed was that I would get headaches the first few months of the treatment if I wasn’t hydrated well. As soon as I had more water my headaches would go away. And, after about 6 months I don’t even get headaches anymore.
Helpful Tips for Starting Kesimpta
Helpful tips for those starting Kesimpta and minimizing loading dose reactions:
-Hydrate, hydrate, hydrate! Drink plenty of water, especially a couple of days leading up to your first dose.
-Plan to take your medication about 30 minutes prior to when you want to fall asleep
-Premedicate with Benadryl and Tylenol 30 minutes prior to injection
-Take the medication out of the fridge at least 30 minutes prior to injection
-Be sure to let the alcohol dry before injecting to minimize stinging
-Plan for the day after your first injection to not do a whole lot – get help if needed
I personally only premedicated before the first three doses that I did, after that, I don’t feel like there is a need to keep premeditating. However, I try to stay hydrated as much as possible on this medication.
If you are considering starting Kesimpta, and still have questions, please don’t hesitate to message me on my Facebook page. I have been happy to chat with others figuring out whether or not they are prepared to start Kesimpta. And, if you have started Kesimpta or your experience doesn’t align with what I am sharing, I am sorry. Please remember that MS is a snowflake disease and no two people are alike, as well as bodies responding to treatment can be very different. This is just what I have noticed.