Treatment Plan for Neuromyelitis Optica

There isn’t a cure for neuromyelitis optica (NMO). But quick treatment can often help you feel better when your symptoms flare up. And long-term therapy helps you avoid future attacks.

NMO is sometimes called Devic’s disease or neuromyelitis optica spectrum disorder (NMOSD). This rare condition usually affects your spinal cord and the optic nerves that send information from your eyes to your brain.

It's an autoimmune disease, meaning your immune system attacks healthy tissue. This can cause eye pain, vision loss, weakness, paralysis, and other symptoms. Most people have flare-ups, then periods of recovery that last months or years.

The damage to your body happens during these attacks. So the goal of treatment is to stop and prevent them.

Treatment for a Flare-Up

Treatment may improve or even reverse your symptoms, though sometimes damage is permanent. To stop a flare, your doctor may use:

IV steroids. Doctors most often prescribe IV methylprednisolone, a steroid, to calm your immune system. You get it through a vein every day for a few days, at a hospital or infusion center. Each treatment usually lasts 1-3 hours.

You may have one or more of these side effects during or soon after treatment, but they usually don’t last long:

• Blood pressure changes
• Fast heart rate
• Sweating or flushing
• Upset stomach or heartburn
• Metallic taste
• Increased appetite
• Swollen ankles
• Trouble sleeping
• Mood changes
• Rise in blood sugar

Plasmapheresis, or plasma exchange. If steroids don’t help enough, your doctor may prescribe this blood filtering procedure. The antibodies (proteins) that cause NMO attacks are in the liquid part of your blood, called plasma. This procedure removes many of those antibodies.

A nurse will:

• Place a needle with thin tubing into a vein (usually in your arm)
• Remove some of your blood
• Use a machine to separate your blood cells and plasma.

The machine then combines an artificial plasma substitute with your blood cells. Your nurse then returns the blood to your body through another vein.

Plasma exchange takes several hours, every other day, for about 2 weeks. You usually get it in a hospital or clinic.

You may feel lightheaded or nauseated, or notice tingling or numbness during the procedure. You might be tired afterward. Drink lots of water before and after the treatment to cut down on these side effects.

Long-Term Treatments

NMO can come back months or years after your first attack. To avoid this, your doctor may prescribe medications that you keep taking.

These drugs, called immune system suppressants, ward off flare-ups by calming your immune system.

Your immune system protects you from viruses and bacteria. So you may be more likely to get infections when you take these medicines. Most often, these infections affect your upper respiratory tract (your nose and throat) and urinary tract.

Immune system suppressants have different side effects and costs. Ask your doctor about the pros and cons of each. Some may cause problems with pregnancy, for example. So tell your doctor if you’re pregnant or plan to be in the near future.

These treatments include:

Azathioprine (Azasan, Imuran).You take this as a twice-daily pill. It may upset your stomach or cause bloating, constipation, nausea, or diarrhea. It can also irritate your liver. Your doctor may test your blood occasionally to check for problems.

Mycophenolate mofetil (CellCept). This daily pill has similar side effects to azathioprine. It also can cause liver problems. It may give you a headache, particularly when you first start to take it.

Rituximab (Rituxan, Ruxience, Truxima). You’ll probably get IV treatments twice a year in an infusion center. It has few side effects.

The FDA has approved two medications to manage NMO in people who have a certain antibody in their bodies. Most people with NMO have an antibody called anti- aquaporin-4, or AQP4. If a blood test finds you have AQP4, your doctor may prescribe one these treatments:

Eculizumab (Soliris). You get an infusion of this IV medication once a week for 5 weeks. After that, you have a treatment every 2 weeks.

Eculizumab raises your risk for meningococcal infections, dangerous conditions that affect your brain and spinal cord. Before you start treatment, get vaccinated for these infections. Side effects of eculizumab include nose and throat infections, headache, back pain, and nausea.

Inebilizumab (Uplizna). You usually get your first two doses of this IV medication 2 weeks apart. Then you'll likely get it twice yearly. The most common side effects are urinary tract infections and joint pain.

Satralizumab-mwge (Enspryng). This medication is given as a shot two and four weeks after the first shot and then every four weeks after. Some side effects include headaches, nausea, tiredness, and pain in the extremities.

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