When stable isn’t necessarily safe: Rethinking my MS medication

I went to see the neurologist last month for a routine follow-up for my multiple sclerosis (MS), anticipating no changes.

After all, I’ve been on the same medication for my MS, fingolimod (which often goes by the brand name Gilenya), for about 10 years. I feel my MS is stable, and my MRI scans from May of my brain and spinal cord confirmed that, as they reflected no changes from my previous scan in May 2024. Additionally, my recent laboratory assessments, which are drawn to evaluate my medication’s safety, included a complete blood cell count and liver function tests and were similar to previous assessments.

So I was surprised when my neurologist suggested changing my medication. My thoughts were “wait, what, no.” The recommendation made no sense to me.

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This neurologist is new to me, and she also completed her medical training recently. And this visit was only the second time I’d seen her. So I didn’t yet have that solid level of trust in her that comes with seeing a physician over a longer period of time. As a result, one of my first thoughts was that she didn’t know what she was doing. Why would she want to change my medication when my previous neurologist had kept me on it for so long and I’m doing well?

Well, she justified her reasons for a change, and they made sense to me. I’d misunderstood how my medication worked, as well as its side effects.

My white blood cells (WBCs), both the leukocytes and lymphocytes, were low. These cells play a crucial role in the body’s immune system by protecting against infections caused by bacteria and viruses. By not having a normal level of these cells, I had an increased risk of infections, and my body would be less able to fight them.

It’s thought that fingolimod works in MS by decreasing the access of lymphocytes to the central nervous system, thus decreasing inflammatory damage. Essentially, fingolimod sequesters or retains the lymphocytes inside the lymph nodes and doesn’t allow them to be released into the bloodstream to get access to the brain and spinal cord, where they cause problems.

My WBCs, including the lymphocytes, have been stable but abnormally low since I started on fingolimod. I assumed this reaction was an expected side effect associated with fingolimod based on how the drug works, but in fact, it’s not a common side effect and has risks. It was a misconception on my part, which is embarrassing because I’m a pharmacist and am supposed to know everything about medications.

In a clinical trial of 783 patients on Gilenya — noted as part of the drug information from its maker, Novartis — results showed that leukopenia, defined as low WBCs, occurred in only 2% of the patients, while lymphopenia, defined as low lymphocytes, occurred in only 7% of the patients. So my numbers were not so common after all.

Change or not to change?

My neurologist suggested trying something else because of my increased risk of infections and reduced ability to fight them. I always understood that was a general risk associated with most of the disease-modifying therapies (DMTs) for MS, but I also thought having leukopenia and lymphopenia from fingolimod was normal. But now I’m thinking differently about the risk-to-benefit ratio of it.

I’m still hesitant to change my medication because my disease is stable. I’ve been healthy for the past six months, during which I haven’t had any serious infections. But I was ill in October and November, with two respiratory infections that required antibiotics.

My neurologist and I decided not to switch medications during this appointment, especially since the overall risk of infections is lower right now because of the warmer weather. The plan is for me to learn more about other DMTs and their risks and then have another discussion about a medication change at my next appointment, in October.

I appreciate the time and opportunity I’ve got to learn about other DMT options so that I’ll have an educated and productive discussion with my neurologist next time.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.