Secondary Progressive Multiple Sclerosis

Secondary progressive multiple sclerosis is a stage of MS where symptoms gradually worsen over time. It develops after relapsing-remitting MS, when the pattern of flare-ups and recovery periods changes to steady progression. While there’s no cure, treatments and lifestyle adjustments can help manage symptoms and support independence.

Table of contents

• What is secondary progressive multiple sclerosis?
• Types of secondary progressive MS
• Symptoms
• Causes and progression
• Risk factors
• Diagnosis
• Treatment options
• Living with secondary progressive MS
• Outlook

What is secondary progressive multiple sclerosis?

Secondary progressive multiple sclerosis (SPMS) is a stage of multiple sclerosis (a disease of the central nervous system) that develops in people who initially had relapsing-remitting MS (RRMS). The central nervous system includes the brain, spinal cord, and optic nerve.^[1][2]

In relapsing-remitting MS, symptoms flare up during attacks called relapses, then improve or disappear during periods called remissions. When the disease transitions to SPMS, symptoms gradually worsen over time without fully going away. The severity and frequency of relapses decrease or even stop altogether, but permanent changes in symptoms increase.^[1][3]

The main feature of secondary progressive MS is that symptoms gradually worsen and accumulate over time, a process known as progression. This is why it’s called “secondary progressive” — the progressive phase develops following, or secondary to, the initial relapsing-remitting phase.^[3]

The transition from RRMS to SPMS typically happens between 10 and 25 years after the initial diagnosis. About 25% of patients with relapsing-remitting MS progress by 10 years, 50% by 20 years, and more than 75% by 30 years. Most people develop SPMS when they are in their 40s or 50s.^[3][11]

Types of secondary progressive MS

Secondary progressive multiple sclerosis can be classified into different types based on whether relapses still occur and whether disability is increasing. These classifications help doctors better understand the disease and plan treatment.^[1][4]

Based on the presence of relapses, there are two types:

• Inactive or nonrelapsing secondary progressive multiple sclerosis (nrSPMS): You don’t have relapses. Your symptoms get worse slowly and steadily over time.^[1]
• Active or relapsing secondary progressive multiple sclerosis (rSPMS): You still have some flare-ups, and symptoms slowly get worse. New activity may also be visible on MRI scans.^[1][4]

Doctors also describe SPMS as “with progression” or “without progression” based on whether physical disability is increasing over time. SPMS with progression means that disability is getting worse, while SPMS without progression indicates that the level of experienced disability is relatively stable.^[4]

These descriptors work independently of each other, meaning you could have active SPMS with progression, non-active SPMS with progression, active SPMS without progression, or non-active SPMS without progression. During your life with MS, you’ll probably move between these different courses.^[4]

Symptoms

Secondary progressive MS symptoms are similar to those of relapsing-remitting MS, but they become more serious over time. How fast symptoms get worse is different for each person. Sometimes it takes many years, while other times it can happen more rapidly.^[1][2]

Common symptoms include:

• Difficulty walking or keeping your balance^[1]
• Feeling very tired (fatigue)^[1][2]
• Muscle spasms^[1]
• Numbness or tingling in your arms or legs^[1][2]
• Problems thinking, learning, concentrating, or remembering^[1][4]
• Stiff muscles (spasticity)^[1][2]
• Trouble with your bladder or bowels, such as needing to urinate right away^[1][2]
• Vision problems, such as seeing double^[1][2]

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. Mobility complications are often the first sign that relapsing-remitting MS is transitioning into secondary progressive MS. Many people experience more difficulties with balance, coordination, strength, and endurance.^[1][13]

You may notice symptoms that get worse over time rather than coming and going. When you do have a relapse, you may not recover from it as fully as you once did.^[6]

Causes and progression

Researchers aren’t sure of the exact cause of secondary progressive MS or what triggers the transition from relapsing-remitting MS. However, studies show that damage builds up in the brain and spinal cord over time. Some of this damage is from previous relapses during the relapsing-remitting phase.^[1][6]

Early in an MS diagnosis, the immune system attacks myelin (a protective cover around nerves) by mistake. With myelin damage, nerves can’t send signals to the brain and spinal cord as well. Over time, this damage adds up and starts to harm the actual nerve fibers under the myelin.^[1][2]

When you have RRMS, most damage is caused by sudden flare-ups or 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. The disease becomes less inflammatory, but nerve cells become progressively more damaged. This steady nerve damage makes symptoms more intense over time.^[1][4]

At the SPMS stage, patients generally have fewer relapses because inflammation has decreased. However, because nerves have begun to be damaged or lost, a worsening of the condition is generally experienced.^[2]

Risk factors

You’re more likely to get secondary progressive MS if you have relapsing-remitting MS, since SPMS is a later stage of RRMS. However, not everyone with RRMS will develop SPMS. Before disease-modifying drugs were available, half of people with RRMS changed to SPMS within 10 years. New treatments have altered the course of MS and can slow disease progression and delay the transition to SPMS.^[1][6]

Other factors that could raise your risk of developing SPMS include:

• Being male^[1]
• Having MS symptoms that start later in life^[1]
• Having more MS flare-ups early on^[1]
• Having frequent and severe relapses^[6]
• Having a lot of nerve damage in your brain and spinal cord^[6]

Since the risk of multiple sclerosis is significantly higher when a parent has been diagnosed with the disease, genetic factors may play a role. SPMS affects women twice as often as men and is more common in Caucasian patients.^[2]

Diagnosis

SPMS can only be diagnosed in people who already have relapsing-remitting MS. The shift to SPMS often happens slowly, and it can be hard to know for sure if your condition has changed. Usually, doctors diagnose SPMS when your symptoms have steadily gotten worse for at least 6 months.^[6][15]

A diagnosis of secondary progressive MS is often a clinical diagnosis, based on your medical history and the symptoms you’re experiencing, rather than on diagnostic tests alone. If you stop experiencing the usual relapse-remission cycle and instead begin to experience gradual functional decline, you may have developed SPMS.^[3][4]

To make a diagnosis, a healthcare 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.^[1]

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. Your symptoms offer the main clue to diagnosis. With SPMS, you’ll have fewer or no relapses, and symptoms will gradually worsen over time.^[1][6]

No single test can confirm that you have SPMS, but your doctor can track changes in your disease with tests that show how much nerve damage you have. Tests may include:^[6]

• MRI (magnetic resonance imaging): This test uses powerful magnets and radio waves to create detailed images. MS makes areas of damage called lesions in your brain and spinal cord, which an MRI can reveal.^[6]
• Spinal tap (also called lumbar puncture): This test can help evaluate the extent of nerve damage.^[4]

After your diagnosis with SPMS, you should have regular MRI scans to monitor the progression of the disease and discuss changes to your treatment depending on how your case is developing.^[4]

Treatment options

Unfortunately, there’s no cure for MS, including SPMS. However, treatments can slow progression and help you manage symptoms and stay independent for as long as possible.^[1][4]

The kind of SPMS you have will help your doctor figure out how to manage your disease. You’ll usually continue to take your RRMS medication as long as it’s effective. Studies show that the use of effective medications during the RRMS phase of the disease can slow down or possibly prevent the transition to SPMS.^[2][4]

Disease-modifying drugs

If you still have relapses (active SPMS), your doctor may suggest you take medications called disease-modifying drugs (DMDs). DMDs can help prevent relapses and make the ones you do get less severe.^[8]

DMDs that treat SPMS include alemtuzumab, cladribine, diroximel fumarate, dimethyl fumarate, fingolimod, glatiramer acetate, interferon beta-1b, mitoxantrone, monomethyl fumarate, natalizumab, ocrelizumab, ofatumumab, ozanimod, ponesimod, siponimod, teriflunomide, and ublituximab-xiiy. Cladribine, mitoxantrone, siponimod, and ublituximab-xiiy are drugs that are FDA-approved specifically for treating SPMS.^[8]

You can continue to take the same drug you took when you had RRMS if it has helped you. Your doctor can switch you to a different DMD if needed.^[8]

Corticosteroids

Corticosteroid drugs are another option for treating relapses. They bring down inflammation in your brain and spinal cord to make your relapses shorter and less severe. You’ll usually take steroid medicines for only short periods of time because they can cause side effects.^[8]

Rehabilitation therapy

If you don’t have relapses but your symptoms get worse (non-active progressing SPMS), you can try rehabilitation. This program uses several different types of therapy to improve your strength and ability to move.^[8]

A rehabilitation program can include:

• Physical therapy: A physical therapist teaches you exercises to improve your strength, balance, energy level, and pain. If you have trouble walking, your therapist can show you how to get around with a cane, crutches, or a scooter.^[8]
• Occupational therapy: An occupational therapist can help you adjust to changes in your mobility and teach you how to use assistive devices and make modifications to your environment.^[13]

Living with secondary progressive MS

There are many steps you can take to manage your SPMS and maintain your quality of life. Making lifestyle modifications, using mobility devices, and adjusting your living and work environments can help with symptoms.^[14]

Healthy lifestyle habits

When you have a chronic condition like SPMS, healthy habits are essential to staying in good shape and managing your symptoms. Eating a well-balanced diet, staying active, maintaining a moderate weight, and getting enough rest can help improve your energy levels, strength, mood, and cognitive function.^[14][19]

Exercise is an excellent way to stay fit and manage symptoms. Studies show that physically active people living with multiple sclerosis may experience less severe symptoms. Exercise offers benefits including boosting mood and energy, increasing strength and mobility, improving cardiovascular health, and reducing fatigue and depression. Try to work out for at least an hour every week, choosing activities that fit your limitations and capabilities.^[19]

A nutritious diet consisting of whole grains, lean meats, fruits, and vegetables can reduce fatigue, strengthen your heart, improve your overall health, and increase muscle strength. While living with multiple sclerosis, avoid inflammation-inducing foods such as processed meats, sodas, and fried foods. Also reduce your alcohol intake.^[19]

Getting enough rest is also essential. If you’re finding it difficult to sleep or feel tired regularly, let your doctor know. It’s also important to avoid tobacco smoke to limit your symptoms and promote overall health.^[14]

Mobility devices

If you’ve been losing your balance, tripping, or finding it difficult to stand or walk, let your doctor or rehabilitation therapist know. You might benefit from using a mobility support device such as a brace, cane, walker, scooter, or wheelchair. Using one or more of these devices may help prevent trips and falls and reduce fatigue.^[14]

Home modifications

By changing your layout, adjusting or swapping out some furniture, and making other thoughtful modifications, it’s possible to create a safe home environment and maintain your independence when living with SPMS.^[13]

Consider these tips:

• Clear walkways by removing clutter and other tripping hazards from hallways and areas you frequently pass through.^[13]
• Adjust the location and height of your furniture so there’s enough space to easily move around it. Consider getting adjustable chairs or adding risers to chairs and tables.^[13]
• Make bathroom modifications for safety and convenience.^[14]
• Ensure adequate lighting throughout your home.^[13]

Managing the emotional impact

Secondary progressive MS can have a big impact on your life, including on your emotions. You may have powerful feelings that are hard to manage, including anger, stress, anxiety, sadness, or confusion. No matter what emotions you have, it’s OK.^[18]

When you learn you now have SPMS, you may feel shock, confusion, guilt, worry about the future, or a loss of control. Don’t blame yourself — you didn’t do anything to cause your disease to progress. Remind yourself that SPMS affects each person differently.^[18]

You can learn ways to manage your feelings about SPMS and reduce stress in your daily life. Talk to your healthcare team, including therapists who specialize in helping people cope with chronic conditions. Support groups can also provide meaningful connections with others living with MS. Reach out to friends and family for help and emotional support.^[18]

Outlook

The progression of secondary progressive MS varies greatly from person to person. The rate at which symptoms become more severe is different for everyone — typically the changes are slow and gradual over a number of years, though for some it can be more rapid. There can also be periods of minor improvement or times when symptoms stay the same.^[3]

No matter what type of MS someone has, impacts are the result of damage in the central nervous system. With progressive forms of MS, including SPMS, symptoms will worsen over time. However, it’s important to note that MS is very different from person to person. One person may have a tremendous amount of impairment while another may have far less, or may have a different type of impairment.^[15]

About two-thirds of people with SPMS are able to walk and don’t need a wheelchair. You may benefit from a mobility aid like a cane or walker at some point. Some people with SPMS use a scooter or motorized chair for more strenuous activities, but not all the time.^[18]

While there’s no cure, treatments can slow progression and help you manage symptoms and stay independent for as long as possible. With proper care, lifestyle adjustments, and support, many people with SPMS continue to maintain a good quality of life.^[1]