If your doctor says you have secondary progressive multiple sclerosis (SPMS), it means you're in a different stage of your disease. Most folks get it after living for a while with relapsing-remitting MS (RRMS).
In SPMS, you may not get any break in your symptoms, unlike RRMS, when you had flare-ups that came and went. Your doctor can suggest medicine to help manage them.
Secondary vs. Relapsing-Remitting MS
During relapses, your immune system -- your body's defense against germs -- causes inflammation that damages the protective coating around nerve fibers. This disrupts the flow of nerve signals to and from the brain and spinal cord. It leads to symptoms like tiredness, numbness, and weakness.
Then the immune system stops attacking. Your symptoms improve or disappear, and you go into remission. Relapses and remissions alternate over time.
In SPMS, your symptoms steadily get worse instead of coming and going. You might still have relapses, but they don't happen as often.
What Causes SPMS?
It's not clear why RRMS changes to SPMS. Some researchers think it’s because of nerve damage that happened earlier in the disease.
Not everyone with the relapsing-remitting form of the disease will get SPMS. Doctors don't know for sure who will and who won't, or how quickly it will happen.
You're more likely to get SPMS if:
- You're older
- You've lived with MS for a long time
- You have a lot of nerve damage in your brain and spinal cord
- You have frequent and severe relapses
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. Today, these drugs can slow MS and delay the move towards SPMS, although doctors don't know how much they delay it.
Symptoms of SPMS
The shift to SPMS often happens slowly, and it can be hard to know for sure if your condition has changed. Your symptoms offer the main clue. With SPMS, you'll have fewer or no relapses. When you do have a relapse, you may not recover from it as fully as you once did. You may notice symptoms that get worse over time, including:
Tests for SPMS
Usually, doctors diagnose SPMS when your symptoms have steadily gotten worse for at least 6 months.
No single test can confirm that you have SPMS. But your doctor can track the changes in your disease with tests that show how much nerve damage you have.
- MRI (magnetic resonance imaging). MS makes areas of damage called lesions in your brain and spinal cord. An MRI uses powerful magnets and radio waves to make pictures that show how many lesions you have and where they are. Your doctor can see if things have gotten worse.
- Cerebrospinal fluid (CSF) test. CSF is a clear fluid that bathes and protects your brain and spinal cord. Your doctor will check for certain proteins and other substances in your CSF that can show whether your disease is active. To take a sample of CSF, your doctor will do a lumbar puncture, also called a spinal tap.
- Evoked potentials (EP) test. This is a check of your nerves to find out if MS has damaged the ones that help you see, hear, and feel. Your doctor places electrodes on your scalp to record electrical activity in your brain.
- Optical coherence (OCT scan). This scan takes a 3D image of your eye so your doctor can check your eye health and see what’s going on beneath the surface.
What to Expect
Once you have SPMS, your symptoms may steadily get worse, but how quickly this happens differs from person to person. Your doctor will describe your SPMS based on how active your disease is:
- Active. You are in a relapse or you have new symptoms.
- Stable. You don't have new symptoms.
- Active-progressing. You have relapses, and your symptoms are getting worse.
- Non-active-progressing. No relapses, but your symptoms are getting worse.
Treatment for SPMS
Your treatment strategy depends on which SPMS phase you’re in.
Active SPMS. When you have active SPMS, your doctor may suggest that you take medications called disease-modifying drugs (DMDs), as you did when you had RRMS. DMDs can help prevent relapses and make the ones you do get less severe. DMDs that treat SPMS include:
You can continue to take the same drug you took when you had RRMS if it has helped you.
Corticosteroid drugs are another option. 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 side effects tend to get worse the longer you take them.
Stable SPMS. Your doctor will recommend treatments to manage your symptoms and keep you moving. This may include rehabilitation and drugs to treat problems like:
Active-progressing SPMS. With this type, you may need stronger treatment. Your doctor can switch you to a different DMD. Or you can take the chemotherapy drug mitoxantrone (Novantrone). It works by stopping the attack by the immune system against myelin, the protective coating around your nerve cells.
Cladribine (Mavenclad), novantrone, and siponimod (Mayzent) are FDA-approved drugs specifically for treating SPMS. Novantrone is not used very often because it can cause side effects such as serious heart problems and an increased risk for infections and leukemia. Cladribine has been linked to life threatening infections and possible tumors so it is usually reserved for people who can not tolerate or do not respond to other treatments.
Non-active-progressing SPMS. In this type of SPMS, you don't have relapses, but your symptoms get worse. If that's your situation, you can try a rehabilitation program to improve your strength and ability to move.
Rehabilitation Therapy for SPMS
Rehab helps with the physical and mental effects of SPMS on your life and keeps you independent and safe. 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.
Occupational therapy. This program teaches you how to manage your daily activities more easily. You'll learn how to:
- Conserve energy
- Use tools to help you get dressed, cook, and do other tasks
- Change your work area to make it easier to get things done
Cognitive rehabilitation. MS can affect your ability to think, concentrate, and remember. A therapist checks suggests ways to cope, including:
- Organization tools like to-do lists, calendars, notes, and appointment reminders
- Methods to block distractions and improve your focus
- Memory tricks like word association to help you recall names, words, and facts
Vocational therapy. MS can make it hard to do your job. A therapist can show you better ways to set up your workspace, organize your day, and complete your tasks. If the job you have now doesn't go well with your SPMS, the therapist can help you find and apply for a position that's a better fit.
Speech-language therapy. MS can damage the muscles that control speech and swallowing. A speech-language therapist will teach you how to talk more clearly and easily, and how to eat without choking.
Lifestyle Changes for SPMS
Beyond medication and therapy, there are things you can do to make living with SPMS easier.
Change the way you eat. No single eating plan has been proven to relieve MS symptoms. But it may help to get plenty of foods that can reduce inflammation.
- Choose “good” fats like those found in salmon, canola oil, flaxseeds, and walnuts. Have less saturated fat, which comes from meat and dairy products.
- Fruits and vegetables are packed with plant nutrients that might help slow MS disease activity.
- Limit salt. Some studies show that a high-salt diet leads to more severe MS symptoms, while others don't. But too much salt can cause other problems, like high blood pressure and heart disease.
- Strengthen your muscles and joints
- Improve your ability to walk and stay balanced
- Fight fatigue and depression
- Increase your flexibility
Make aerobic exercise -- the kind that gets your heart pumping, like walking or swimming -- part of your routine. Also do strength training and stretching. When you work out, make sure you don't overdo it, since that can lead to more fatigue.
Keep your weight under control. Carrying around extra pounds makes MS symptoms like fatigue worse. Being overweight also puts extra stress on your joints. If you need to lose weight, ask your doctor for tips. Dropping just 10% of your body weight could help you feel better.
Don't smoke. Smoking makes your symptoms worse and speeds up the pace at which your disease gets more severe. If you're a lifelong smoker and you've tried to quit in the past, ask your doctor to suggest methods that might help.
Ask your doctor about supplements. Some vitamins and nutrients have shown promise for treating MS. Check with your doctor before you try any supplements, such as these:
- Vitamin D. In a few studies, people with low vitamin D levels were more likely to get MS attacks and new lesions on their brain and spinal cord.
- Biotin. In some studies, high doses of this B vitamin improved symptoms in people with progressive forms of MS. Yet in other studies, a few people got worse while on the supplement.
- Antioxidants. Vitamins like A, C, and E help fight cell damage that may be involved in MS. But because they ramp up the immune system, they might make MS worse. It's safer to get antioxidants from fruits and vegetables rather than supplements.
- Probiotics. A mix of healthy and harmful bacteria normally live in your gut. Research shows that people with MS have more of a harmful type of bacteria that adds to inflammation. Probiotics have "good" bacteria and might help restore the balance in your gut.
The FDA doesn't regulate supplements as thoroughly as it does medications, so it's not always clear how well they work and how safe they are. And they can have side effects.