Managing skin issues caused by NMOSD and its treatments

Neuromyelitis optica spectrum disorder (NMOSD) is largely known for its effect on the central nervous system, but the associated skin issues are often overlooked.

For those of us living with NMOSD, the skin can become a silent messenger, reflecting the internal battle happening within our body. From goose bumps and burning sensations to acne and peeling skin, NMOSD and various treatments can leave their mark in unexpected and often uncomfortable ways.

The toll of steroids

My first encounter with corticosteroids was after I was diagnosed with NMOSD in 2010, and to this day, every time I take the medication, the same things happen. While steroids help reduce inflammation and prevent further nerve damage, the drugs come with a steep price for my skin.

One of the most frustrating side effects of steroid use is water retention, which can make my skin appear puffy and stretched. When I finally start to lose that water weight, my skin always struggles to adjust, becoming dry and prone to peeling.

Steroids also wreak havoc on my complexion. The emotional toll of dealing with visible side effects like acne and peeling skin can add another layer of frustration to an already challenging condition.

Recommended Reading

January 29, 2025 Columns by Jennifer V.

How attitudes toward me changed when my disabilities became visible

Weird sensations

When my NMOSD is in overdrive, I notice odd things happening to my body. Aside from the common symptom of a burning sensation, which often makes my skin feel like I have a bad sunburn, I also notice goose bumps and the hair on my body standing on end. These things should happen naturally when I’m cold or scared, but without those external triggers, it confuses me.

Itching is another common but overlooked side effect of NMOSD and its treatments — including Ultomiris (ravulizumab-cwvz), which I’m now taking. Unlike typical dry skin or allergic reactions, this type of itching feels deeper, almost nerve-based, and scratching often provides little relief.

At times, the itching is localized, affecting my hands, arms, or face. I’ve yet to find long-term relief, and I doubt I will when the root cause is tied to nerve damage or medication side effects.

After my plasmapheresis treatments, I was left with scars on my chest. They’re unsightly, puffy reminders that I’m battling a rare autoimmune disorder. During winter, I can hide the regular reminder under cardigans and blazers, but once the warm weather returns, I’m sure I’ll have people asking me about them.

These scars are itchy and the tissue buildup underneath feels bunched and awkward when I’m trying to find a comfortable position for sleep. Late at night when these scars cause discomfort, I find myself searching the internet for things like, “How do you know if a scar is infected?” as my paranoia runs every bad scenario through my head.

The impact of these skin issues goes beyond physical discomfort. The visible signs of NMOSD — peeling skin, acne, and persistent redness — can take a toll on self-esteem and body image. It’s hard to feel confident when your reflection in the mirror doesn’t match how you feel inside. The emotional weight of managing a rare disease is already heavy, and adding skin issues to the mix can make it even harder to maintain a positive outlook.

Social interactions can become more difficult, too. Acne and skin peeling make me feel self-conscious, while itching and the burning sensation make it difficult to focus on conversations and enjoy time with my friends and family. The unpredictability of NMOSD symptoms means I feel comfortable in my skin on some days, and exposed and vulnerable on others.

Living with NMOSD means navigating a complex relationship with my body, and my skin is no exception. The physical changes and discomfort can feel overwhelming, but understanding the connection between NMOSD and my skin is the first step toward managing it. While I can’t control how NMOSD affects my body, I can control how I care for it.

Note: Neuromyelitis News 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.