Cue the Side Effects
There’s been a bit of a lag since my last blog post. This has been the result of having started my MS treatment.
I started my Disease Modifying Therapy (DMT) on Friday, September 24th. For my first DMT, I decided to go with Kesimpta (its chemical name is Ofatumumab). Kesimpta is a monoclonal antibody that targets CD20, a protein that is found on the surface of white blood cells called B lymphocytes. It binds to this protein and destroys the targeted B cells.
One of the challenges with MS is that the medications that are used to fight it often make you feel worse, rather than better. Keeping it honest, Kesimpta is basically poison. I am poisoning my B cells. It’s important that I do so, because it is understood that my B cells are responsible for causing my body to attack itself, resulting in lesions on my brain. I don’t want any more lesions, so those naughty B cells have got to go. The result, however, is that I haven’t been feeling too hot since starting my DMT. It’s been a rough last two weeks.
It’s challenging to inject yourself with a medication that you know is going to make you feel worse, rather than better. I am very fortunate that at this point in my MS journey, I feel good. I have cloudy vision in my left eye, but I can go out for a run, dance with my toddler, and take care of my family. Apart from my wonky left optic nerve, and stress and depression stemming from the diagnosis, I’ve been faring well. Enter Kesimpta. After my first dose of the DMT, I had chills for several hours (picture me in winter pyjamas and under 5 layers of blankets, but still shivering). I had a headache and body aches for 9 days straight. I have had bouts of lightheadedness where I have had to lie down to prevent myself from fainting. And the new side effect on the block is constipation. Fun! With each new symptom, I compare it to the list of known side effects for Kesimpta, and sure enough, they all appear on the list. I have joked that “everything is a side effect of Kesimpta”, but it isn’t far from the truth. When I had my first bout of lightheadedness, I checked my blood pressure and found it to be a bit low. I then checked the list of known side effects for Kesimpta, and, lo and behold, low blood pressure is on that list… as is high blood pressure. All drugs have side effects, but MS drugs really do take the cake.
The side effects of DMTs deter some patients from taking them at all. When you are mostly feeling well, it is hard to be convinced that you need to make yourself feel crummy. However, waiting until you no longer feel well to get onto a DMT allows disability to accrue in the background. None of the DMTs on the market right now will undo MS damage once it has been done. The DMTs are designed to prevent future MS damage - the kind that may take an MS patient from mostly feeling well to feeling unwell very suddenly.
Serious infections can happen during treatment with Kesimpta. Your body uses your B cells, among other mechanisms, to fight off infections. By eliminating those B cells, I leave myself vulnerable to viruses, bacteria, and fungi. My son has managed to get sick twice in the two weeks since I started my DMT, the first came not 12 hours after my first dose. Caring for a sick toddler while having a suppressed immune system is a new and slightly terrifying experience for me, but so far I haven’t caught any of the bugs that he has brought home. I’m keeping my fingers and toes crossed that it stays that way!
I go for my baseline MRI on October 21st. I will then be sent for annual MRIs to compare to this baseline MRI. This, in combination with the presence or absence of any clinical symptoms, is how we will know whether Kesimpta is working. New lesions or new clinical symptoms means that it’s time to try a different DMT. But the hope is that I will stay free from new lesions and new symptoms.
While the side effects have been kicking my butt over the course of the last two weeks, I am optimistic that there has been some improvement in the last few days. With Kesimpta, treatment starts out with three loading doses, each one week apart. For me, these occurred on September 24th, October 1st, and today. Then I get a week off and regular monthly doses will start on October 22nd, and the 22nd of each month thereafter. The loading doses are known to bring the worst of the side effects, as they are committing a mass slaughter of B cells. The monthly doses just hold the B cells down, as they have already been depleted. I am also optimistic for my prognosis. I now feel that I am doing everything that I can do to prevent MS relapses and disability. I am eating a healthy diet, exercising, supplementing Vitamin D, and now taking a top tier DMT. If I have an MS relapse, I won’t have myself to blame.
Below are some pictures of me taking dose three. Here’s hoping that dose three doesn’t bring back the headache. I can definitely do without the multi-day-long headache. Check out my awesome new MS awareness t-shirt!
