Secondary Progressive Multiple Sclerosis (SPMS)

Secondary progressive multiple sclerosis (SPMS) is a stage of multiple sclerosis (MS) that may happen in people with relapsing-remitting MS (RRMS). Symptoms slowly get worse. During RRMS, symptoms flare up and then go away. Symptoms don’t fully go away with SPMS.

Secondary progressive MS happens because your nerves get more and more damaged. This affects how well they can do their job. Treatment options are available to help you manage symptoms.

Types of secondary progressive MS

There are two types of this condition. These types are based on whether you still have relapses. A relapse is when MS symptoms flare up:

• Inactive or nonrelapsing secondary progressive multiple sclerosis (nrSPMS): You don’t have relapses. Your symptoms get worse slowly and steadily over time.
• Active or relapsing secondary progressive multiple sclerosis (rSPMS): You still have some flare-ups and symptoms slowly get worse.

SPMS symptoms

Secondary progressive MS symptoms become more serious over time. How fast symptoms get worse is different for each person. Sometimes, it takes many years. Other times, it can happen faster. You might notice:

• Difficulty walking or keeping your balance
• Feeling very tired
• Muscle spasms
• Numbness or tingling in your arms or legs
• Problems thinking, learning, concentrating or remembering
• Stiff muscles
• Trouble with your bladder or bowels (like needing to pee right away)
• Vision problems (like seeing double)

At first, you might only have a few symptoms. But over time, these may become more noticeable and affect different parts of your daily routine.

Secondary progressive MS causes

Researchers aren’t sure of the exact cause of secondary progressive MS. But studies show that damage builds up in your brain and spinal cord. Some of this damage is from previous relapses caused by relapsing-remitting MS.

Early in an MS diagnosis, your immune system attacks myelin by mistake. Myelin is a protective cover around nerves. With myelin damage, your nerves can’t send signals to your brain and spinal cord as well. Over time, this damage adds up. It starts to harm the actual nerve fibers under the myelin.

When you have RRMS, most damage is caused by sudden flare-ups (relapses). After a flare, you may feel better in between until the next one happens.

Years later, when you move into SPMS, your nerves keep getting weaker and more damaged little by little, even without big flare-up attacks. This steady nerve damage makes symptoms more intense over time.

Risk factors

You’re more likely to get secondary progressive MS if you have relapsing-remitting MS. SPMS is a later stage of RRMS. But not everyone with RRMS gets SPMS.

Other factors that could raise your risk include:

• Being male
• Having MS symptoms that start later in life
• Having more MS flare-ups early on

How doctors diagnose secondary progressive MS

To make a diagnosis, a provider will ask questions about your symptoms and medical history. They’ll want to know when your symptoms started, how bad they are and how they affect your daily life. It helps to explain if your symptoms come and go or if they keep getting worse.

Your provider will also do a physical and neurological exam. They might check how you walk and test your balance, if you’re able to do so.

Then, they may order tests like an MRI. This lets them see if there’s damage to your brain or spinal cord. They might compare new MRI scans to older ones to see how much damage has happened over time.

A secondary progressive MS diagnosis takes time. Your provider needs to make sure your symptoms aren’t caused by something else or by a temporary flare-up of RRMS. It’s usually hard to tell exactly when you move from RRMS to SPMS because the change happens slowly.

SPMS treatment

Treatment for secondary progressive MS can delay the disease and make symptoms easier to manage. Your provider might recommend:

• Medications: These can slow the disease and treat problems like bladder issues or muscle stiffness.
• Physical therapy: A therapist can help you improve your strength, balance and how you move.
• Occupational therapy: A therapist can teach you new ways to do your daily activities and show you how to use assistive devices.
• Speech therapy: A therapist can help with swallowing and speaking difficulties.
• Energy-saving techniques: This means taking breaks during the day to rest, so you can save energy and feel less tired.

Medications for SPMS

Disease-modifying therapies (DMTs) can slow down the speed of worsening symptoms. DMTs work by calming your immune system. This helps stop it from attacking your nerves and causing new damage.

There are different options depending on the type:

• Nonrelapsing SPMS (nrSPMS): One option researchers are studying is tolebrutinib. It may reduce symptoms. Providers are still testing it, and it’s not currently available to be prescribed. You may need regular liver checks with this medication.
• Relapsing SPMS (rSPMS): These medicines lessen flare-ups, prevent new nerve damage and may slow down worsening symptoms. Options include cladribine, ocrelizumab, ofatumumab, siponimod and others.

DMTs don’t cure secondary progressive MS. But they can help you feel better for a longer time.

Other medications are available for symptom management as needed.

When should I see my healthcare provider?

Tell your provider if you have new symptoms or if your symptoms are getting worse. Your provider will also schedule regular check-ups to make sure your treatments are working and not causing side effects.

Always let them know if you have any questions or worries. They’re here to help.

What is the prognosis for SPMS?

Secondary progressive MS gets worse over time. You may find it harder to do your daily activities as the years go on. You might need to use mobility aids, like a walker or wheelchair, to help you move around safely.

The speed of progression is different for everyone. For most people, it takes many years. But it can happen faster in some cases, especially if you have relapsing SPMS.

Sometimes, your symptoms may stay the same or get a little better for a while. This doesn’t happen for everyone.

Treatment can help you manage your symptoms. While it doesn’t stop the disease completely, it helps you stay independent for as long as possible. With the right care and support, you can keep doing activities you enjoy.

SPMS life expectancy

Multiple sclerosis, including SPMS, usually doesn’t change how long you’ll live. Your symptoms can make daily activities harder and affect how you feel. But most people with MS live just as long as people without it.

Everyone’s situation is different. Talk to your provider to learn more about what to expect.