Switching DMTs: A Sometimes Necessary Hassle

Previously, I wrote about switching to a new DMT after years of being on Gilenya. Due to low lymphocyte counts, I was directed to take my Gilenya every other day instead of daily. To no avail; after a while, that too caused my lymphocyte level to be too low.

Switching DMTs - Attempt #1

Once my count was up enough, I happily started Zeposia. As far as disease-modifying treatments go, it is very similar to Gilenya in how it is administered and how it works to treat RRMS. One month into treatment for Zeposia, my lymphocytes were again too low. Yet, this time they were even lower. My MS specialist informed me that while we could continue treatment, I would be playing with fire. My lymphocyte levels were so low that my body would not have the tools to fight infection if I continued.

The disappointment and frustration I felt were significant. Medication changes are rarely a pleasant or easy experience. So, once again, we decided to stop treatment, give my lymphocytes a chance to improve, and start on another DMT.

The continued struggle with my lymphocyte count

I stopped my Zeposia in May of 2021, hopeful that my lymphocyte count would improve enough by mid-July so that I could start on a new medication. By mid-August, they were still too low. Since diagnosis, it was the first time I had been off of a DMT for an extended period. The only other times were when trying to conceive or being pregnant in the past. Thankfully, I had the extra hormones to keep me feeling well during my pregnancies. This time around, my body felt drastic changes.

Since diagnosis, I had been on some form of DMT and typically did really well, so having to go without was not easy. Dealing with low lymphocyte levels for a while and seeing them continue to decline prompted me to do some research on my own as to how lymphocytes and MS work. I will be writing a separate article on that, so be on the lookout!

What is lymphopenia?

After taking Zeposia for a month, my CBC showed that my lymphocyte levels were at 90, the lowest they had ever been. To put this into perspective, an average adult’s normal lymphocyte count is 780+. DMT-induced lymphopenia is a common side effect. Lymphopenia does not occur in all patients, and its severity varies. Thankfully, lymphopenia is usually reversible once discontinuing the DMT. However, this also varies between individuals and depends on the DMT given. Lymphopenia after starting DMT treatment is not typically enough to warrant switching medication or reducing the dosage. My issue seems to be a rare case.

My treatment decision

Overall the benefits of DMTs for MS outweigh the risks. The benefits they have provided me with MS made me confident that stopping medication was not an option. I was off of all DMTs from May to November of 2021 when my lymphocytes finally reached 800. The doctor’s opinions vary, but mine was not confident in starting me on a new medication until my lymphocytes were high enough, which caused the delay.

Switching DMTs - Attempt #2

After finding that my levels were at the right level in November, I started Mavenclad. Mavenclad is an oral medication, but unlike Gilenya and Zeposia, it is not taken daily. It still depletes lymphocytes but gives your body the time it needs to build them back up. Each treatment cycle, taken a month apart, consists of 1-2 pills a day for 4 or 5 days. Individual dosing is based on weight.

I have finished month 1 and month 2 of year 1; therefore, I will not have to take anything until I begin year 2 in November of next year. I will do another round of bloodwork soon to check lymphocyte counts. After completing year 2, I will have an MRI to determine how well I respond to treatment. As long as things go well, I will not have further MS treatment for up to 4 years following Mavenclad. 4 months after my first cycle, I feel better than I have in the past year!! I’m anxious to keep you all updated on how it goes.

My recent experience has me wondering how often this happens. Have you struggled with DMT-induced lymphopenia? If so, what was your experience? I would love your comments!

XOXO,

Calie