Understanding the Shift from Relapsing-Remitting MS to Secondary-Progressive MS

Keep reading to learn what to expect if you were recently diagnosed with SPMS and how to navigate this new leg of your MS journey.

RRMS is characterized by relapses or flare-ups of symptoms that may linger for a few days or weeks and then ease up during a time of either full or partial remission.

There are two forms of SPMS:

• Active or relapsing SPMS, where you still have flare-ups and detectable MRI changes
  
• Inactive or nonrelapsing SPMS, when you no longer have flares and have no new or active MRI changes indicating inflammation
  

In both types of SPMS, symptoms tend to worsen slowly over time.

The gradual progression from RRMS to SPMS can be hard to notice, and symptoms may worsen at individual rates. For some, it takes years, but in other cases, changes may occur more quickly.

Still, there are certain signs of the transition from RRMS to SPMS, such as:

• Balance or walking issues
• Bladder or bowel issues
• Cognitive changes, such as difficulty concentrating, processing information, or remembering
• Double vision
• Increased fatigue
• Muscle spasms or tightness
• Numbness in the arms or legs

While it can be difficult to nail down exactly when the transition happens, “Doctors look for slow worsening of neurologic function over a 6- to 12-month period in the absence of relapses,” says Kalina Sanders, MD, a board-certified neurologist and the director of the Baptist Comprehensive MS Clinic in Jacksonville, Florida.

In general, people have less inflammation with SPMS than they did with RRMS. But you can still experience relapses and MRI changes while the condition progresses to a phase of worsening nerve damage.

Be sure to tell your neurologist about any new or worsening symptoms you have and attend routine appointments, so the condition can be closely monitored.

Your treatment plan is likely to evolve after you’re diagnosed with SPMS.

Treatment may look a bit different if you have inactive or nonrelapsing SPMS, which has historically been harder to treat. “Until recently, no DMTs have provided significant delay in disability in those dealing with inactive SPMS,” says John R. Corboy, MD, a board-certified neurologist and professor of neurology at the University of Colorado School of Medicine in Aurora, Colorado.

“This is the first study to show significant slowing of progressive disability in inactive SPMS,” says Dr. Corboy. Dr. Sanders heralds the medication as “a shift in the treatment paradigm, from mainly symptomatic care to disease modification, [which finally] fills the longstanding treatment gap in nonactive SPMS.”

And more treatments like it for nonrelapsing SPMS may be coming down the pike.

Along with medication, your treatment plan for SPMS may include:

• Physical therapy to help improve your strength and balance
• Occupational therapy to learn efficient methods of doing daily tasks (e.g., cleaning, cooking, and laundry) and personal care (e.g., bathing and dressing)
• Mobility aids, such as a walker or wheelchair, to help you move about safely
• Support groups or talk therapy to help you work through the emotions of an SPMS diagnosis and connect with others who understand what you’re going through

As you navigate SPMS and its changing treatment landscape, be sure to advocate for your care. This may include bringing a list of questions or concerns to each checkup, taking notes at your appointments, or bringing a friend or family member along for support.

• It’s common for relapsing-remitting multiple sclerosis to eventually progress to secondary progressive MS, but the process can take years and be difficult to track.
• Learning whether you have active (relapsing) or inactive (nonrelapsing) SPMS can help you and your care team tailor your treatment plan to your needs.
• Talk to your doctor about other ways to manage the condition and symptoms, including mental health support, mobility aids, occupational therapy, and physical therapy.