by Lindsay Karp
Medically Reviewed by:
Heidi Moawad, M.D.
by Lindsay Karp
Medically Reviewed by:
Heidi Moawad, M.D.
If successful, these MS therapies could be a game-changer, allowing us to have active social lives without fear of catching viruses, from the flu to the deadly PML.
As someone with multiple sclerosis (MS), I’ve been immunosuppressed for the last 6 years. That’s because the medications currently used to treat MS tamp down an overactive immune system.
When I officially received my diagnosis, I was nervous about altering the immune system I’d relied on my entire life. I worried I’d catch every virus and that fighting them off would be a struggle.
I’ll never forget the anxiety of living through my first flu season without a fully functioning immune system. My son caught the flu that winter, and inevitably, I became sick, too. My immune system was able to fight it off with the help of Tamiflu, but symptoms lasted longer than they would have if I weren’t on Ocrevus — a B-cell-depleting medication for MS.
As a mother, no matter how many precautions I take, my children’s exposure to viruses at school affects me.
I’m constantly afraid of becoming ill because, in addition to feeling sick for longer, my MS symptoms flare as my body fights off a virus. I become weaker than normal, overwhelmingly fatigued, and am unable to fulfill work and parenting duties easily.
Rest and patience are the only way through.
When the COVID-19 pandemic began in 2020, it felt like my worst nightmare came to life. I was already worried about becoming sick. Being on Ocrevus put me at high risk of becoming seriously ill with COVID.
Many of us who already have a chronic health condition also fear the threat of long COVID because any additional ongoing health issues could be enough to change our lives drastically — and we know not to take good health for granted.
When masks became more readily available, I adopted this mode of protection and will likely continue using it indefinitely, at least in some settings. Masking makes me feel more comfortable being indoors in populated areas, even as the COVID threat has lessened.
Masks have given me a sense of comfort that I didn’t have in flu seasons before the pandemic.
Treating MS to slow the progression of the disease is important, but it means accepting that part of our immune system will be compromised.
Becoming sick with a virus and having a difficult time fighting it off is one drawback of being immunosuppressed, but there are other, more serious risks, too.
If we take certain disease-modifying treatments (DMTs) such as Ocrevus, we have a heightened risk of developing the rare but potentially deadly disease known as progressive multifocal leukoencephalopathy (PML), as well as certain types of cancer.
Treating MS to slow disease progression is important, but it means accepting that part of our immune system will be compromised.
As I navigate a world with a less-than-perfect immune system, it’s comforting to know that research is being done to investigate ways to treat MS without suppressing the immune system.
To me, new therapies that don’t compromise the immune system would be a game-changer.
After working with Pfizer to develop one of the first COVID vaccines — an mRNA-based vaccine — BioNTech began applying mRNA vaccine technology to research novel MS treatments.
While it appears this research did not lead to a confirmed new treatment, just hearing about these efforts on the news made me hopeful that I might not be immunosuppressed forever. It was the first time I realized researchers also see the need for treatments that don’t leave us vulnerable to infection. I was comforted to know the future might hold new possibilities.
Other researchers are also searching for ways to treat MS without altering the immune system.
Researchers at the University of Virginia discovered a “master gene” that governs immune tolerance. Now, they’re hoping to find a way to target that gene to produce a healthy immune response to treat MS.
Just hearing about these efforts on the news made me hopeful that I might not be immunosuppressed forever. It was the first time I realized researchers also see the need for treatments that don’t leave us vulnerable to infection.
At Thomas Jefferson University, researchers working with mice have designed an experimental therapy that uses myelin antigens and leaves the immune system intact. More research is needed to determine whether this will be a viable approach in humans.
A research trial that began in 2020 is investigating the use of simvastatin — commonly used to treat high cholesterol — to treat MS. While this study has not yet shared final results, a 2014 study showed that high dose simvastatin reduced brain atrophy in those with secondary progressive multiple sclerosis.
It’s my greatest hope that at least one of these studies finds a new way to treat MS without suppressing the immune system.
Some of us also wonder if we could possibly give our immune systems a break by stopping our immunosuppressing DMTs after a while.
Recently, researchers have begun to examine whether patients can safely discontinue DMTs after years of successful treatment.
Research looking at 259 patients ages 55 and older sought to answer this question. All participants had been relapse-free for at least 5 years or had not shown any new lesions on MRI for at least 3 years and had been taking a DMT for MS continually during this period.
Participants were randomly assigned to either continue or discontinue their medications.
While small numbers of people in both groups did experience relapses or new lesions, as well as adverse events such as respiratory infections, the rate was higher in the group that discontinued medications.
As a result, the researchers could not conclude that DMTs can safely be stopped but suggested that it might be a reasonable option for those over age 55 with stable MS. Further research is needed to provide a more definitive answer.
I’m hopeful that one day I may be able to retire my COVID mask for good. If the research into new treatments is successful, it will enable me — and everyone who is currently immunosuppressed — to resume an active social life without the fear of being exposed to a potentially deadly virus or cancer secondary to immunosuppression.
Being immunosuppressed affects me as much as the symptoms of MS do, and having the ability to treat my disease without losing vital B cells would be ideal.
Until then, I’m thankful for the treatments available today because they’ve come a long way over the last couple of decades. Ocrevus enables me to walk, live, and see the world alongside my family, even if in a limited capacity.
So, while we wait for future therapies, the benefit of living with immunosuppression far outweighs the risks that come along with it.
Medically reviewed on December 23, 2023
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About the author
Lindsay Karp is a freelance writer with a background in speech-language pathology. She writes about parenting, life with MS, the struggle of receiving a diagnosis, and everything in between. Her work has appeared in The Washington Post, USA Today, Stat News, Parents, The Cut, TIME, Salon, Newsweek, Insider, and other outlets. You can follow her on X @KarpLindsay.