If you’ve been recently diagnosed with SPMS, you may wonder how the transition between RRMS and SPMS will affect your MS treatment options and lifestyle.
Most people with MS are initially diagnosed with a form called relapsing-remitting MS (RRMS). In this phase, you may see periodic symptoms such as vision changes or trouble walking. Symptoms often show up suddenly or worsen for a while during a relapse. Then, after a couple of weeks, symptoms usually go away or get much better.
However, many people experience periods with few or no noticeable symptoms, especially early on. “In the first five years of treating a patient, oftentimes, there's no symptom issues to address,” says Robert Fox, MD, a neurologist at the Cleveland Clinic’s Mellen Center for MS. “After 10, 15, 20 years, though, the old lesions, the injury starts catching up.”
At that point, after about 20-30 years of living with MS, you will likely transition to secondary progressive MS (SPMS). With SPMS, your MS symptoms and disability levels may worsen over time, but you might or might not notice distinct relapses anymore.
Though the tools for managing symptoms of SPMS or RRMS are largely the same, you'll likely need to use them more often with SPMS.
Find out more about what to expect when your RRMS turns into SPMS, and how to make the best choices for yourself in this new phase.
RRMS vs. SPMS
Doctors now understand that the features of RRMS and SPMS are not always separate from each other. For example, you may have an RRMS diagnosis but still notice some things worsening over time, such as fatigue or vision quality. Or you may transition to SPMS but still experience occasional symptom relapses.
“We actually think there is some level of progression all across the spectrum of the disease,” says Fox.
What tends to change over time, says Fox, is how much your symptoms come from relapses or symptom flare-ups compared to a gradual decline in function.
You may transition to SPMS when you have fewer relapses but notice a worsening ability to function over time. This usually comes many years after you were first diagnosed with RRMS.
In some cases, the initial diagnosis is primary progressive MS (PPMS), which means you don’t have clear symptom relapses (though this could change over time). Instead, symptoms and sometimes disability, gradually worsen.
Treatment Options
Is there treatment for SPMS?
Modern MS treatments tend to focus on RRMS. They usually target relapses and inflammation.
These treatments work on people with RRMS or in people with SPMS who still experience relapses or have new lesions on an MRI scan. They can significantly reduce or even stop most new relapses or brain lesions visible on an MRI scan.
The latest research, however, indicates that today’s MS treatments don’t do much to slow down the gradual worsening of disability or symptoms in progressive MS
“Our major unmet need is effective therapies to slow the little-by-little decline in our patients' function,” Fox says.
The only MS treatment approved by the FDA so far for people with PPMS is the infusion or injection medication ocrelizumab (Ocreveus). But Fox says proof of ocrelizumab’s impact on the long-term worsening of symptoms in MS is relatively limited. The drug is believed to be more effective in younger patients, especially those who still experience relapses or have new lesions.
A new drug currently under review by the FDA, tolebrutinib, shows promise in slowing disability in people with progressive forms of MS who have no new relapses or lesions. If approved, it would be the first treatment option proven to slow MS disability progression over time.
Will my treatment change with SPMS?
If your doctor tells you that you have transitioned from RRMS to SPMS, you will likely stay on the same treatment plan you followed with RRMS, as long as it has worked for you. This will help prevent any new relapses or lesions.
People diagnosed with PPMS may be put on ocrelizumab, as it is the only approved treatment for PPMS right now. For older patients with PPMS, Fox says doctors will weigh the pros and cons of treatment. Ocrelizumab can raise your risk of infection and lower the effectiveness of vaccines you receive after treatment.
“We know older patients are more likely to have complications from the B-cell depleting therapies like ocrelizumab, and there’s a trade-off of the risk-benefit of any treatment,” Fox says.
Health and Symptom Management
While therapies exist to help symptoms of active SPMS, options to slow the disease's advance are limited.
Your doctor may ask you about other health conditions you have. Your medical team can help you make a plan to keep those other conditions under control. Health issues like high blood pressure and smoking can speed up MS disease progression.
Your doctor will also help you manage your symptoms with SPMS. Various medications, devices, and physical therapy routines can improve common MS symptoms like difficulty walking, vision issues, and bladder problems.
Life With SPMS
If you transition from RRMS to SPMS, you may worry that major changes are ahead. The truth is, your current MS medical plan probably won’t change very much — at least for now.
Instead, talk to your doctor about other health conditions that may affect your MS. Your doctor can help you find ways to lose weight, quit smoking, and control other chronic conditions that may worsen your MS.
Also, mention any symptoms you need help managing in your daily life. If you have a persistent limp in one leg, a cane or walker may help you get around more easily. If you have trouble with incontinence, there may be therapies and medications that can help. Keeping up with physical exercise is also an important part of staying healthy with MS.
Your doctors are here to help you as you live your life with MS. Fox says people with SPMS can also get involved in clinical trials to help find new treatments that directly target disability progression in MS.
