3 days ago
Primary Progressive MS: Myths vs. Facts
Misconceptions about primary progressive multiple sclerosis (PPMS) are common, especially since the condition can look different for everyone. Knowing what's true (and what's not) can help you feel more informed and empowered.
Primary progressive multiple sclerosis (PPMS) is a complex condition that looks different from person to person. Symptoms, experiences, and rates of progression can vary widely.
Because PPMS isn't as well-known as other types of multiple sclerosis (MS), myths and misconceptions often fill the gaps. That can make it harder to find trustworthy answers when you're trying to learn more about the condition.
Here, we break down some of the most common myths about PPMS and share the facts behind them.
Myth#1: There will never be a cure for PPMS
Fact: While there's no cure yet, treatment options are expanding, and research is ongoing.
In 2017, the Food and Drug Administration (FDA) approved Ocrevus (ocrelizumab) as the first disease-modifying therapy (DMT) for PPMS.
In 2024, a new formulation called ocrelizumab and hyaluronidase-ocsq (Ocrevus Zunovo), a subcutaneous injection administered twice a year, was approved. This new injection offers a quicker, approximately 10-minute administration alternative to the traditional intravenous infusion.
Ocrevus and Ocrevus Zunovo are currently the only FDA-approved DMTs for PPMS. However, researchers are actively exploring new therapies. For instance, tolebrutinib, a Bruton's tyrosine kinase (BTK) inhibitor, is undergoing phase 3 trials to assess its potential in slowing PPMS progression.
Additionally, scientists are investigating treatments aimed at repairing myelin, the protective sheath around nerves damaged in MS. One such study involves combining metformin, a common diabetes medication, with clemastine, an antihistamine, to promote myelin repair. Myelin repair is important because it may help restore nerve function and slow disease progression.
Although a cure for PPMS has yet to be found, these developments reflect a growing commitment to improving treatment options and outcomes.
Myth: PPMS primarily occurs in females
Fact: PPMS affects people of all sexes at the same rate.
While relapsing-remitting multiple sclerosis (RRMS) is more common in people assigned female at birth (AFAB), affecting them two to three times more often than those assigned male at birth (AMAB), PPMS affects AFABs and AMABs in roughly equal numbers.
It's important not to assume the type of MS based solely on sex. Regardless of gender, if you experience symptoms suggestive of MS, consult a healthcare professional for an accurate diagnosis.
Myth: PPMS is an older person's disease
Fact: PPMS typically begins in mid-adulthood, not old age.
While PPMS tends to have a later onset than other forms of MS, it doesn't primarily affect older adults. On average, people with PPMS start experiencing symptoms around the age of 40.
Myth: A PPMS diagnosis means you'll be disabled
Fact: Disability progression in PPMS varies widely, and many people maintain mobility and independence for years.
PPMS can lead to physical disability, but how quickly or whether it develops looks different for everyone. Some people notice gradual changes, while others may stay stable for long stretches of time. Not everyone will need mobility aids like canes or wheelchairs, especially early on.
A 2022 study found that about 10% of people with MS experience severe disability within 5 years of diagnosis. That number rises to 25% within 10 years and then increases to 50% after 18 years.
Still, this doesn't mean you should expect disability after receiving a PPMS diagnosis. The location of lesions, your overall health, and how early you begin treatment can all play a role in how the condition progresses.
Working with your doctor on a treatment plan that includes physical or occupational therapy and regular movement can help you stay active and independent for longer.
Myth: Having PPMS means you have to quit your job
Fact: Many people with PPMS continue working, sometimes with a few adjustments.
A PPMS diagnosis doesn't automatically mean you need to stop working. While symptoms like fatigue, changes in memory or thinking, or mobility issues can make certain jobs more challenging, many people with PPMS continue in full- or part-time work, especially in the early stages.
Everyone's experience with PPMS is different, so your ability to work will depend on your specific symptoms and the demands of your job. If you're facing obstacles, workplace accommodations, like flexible hours, assistive devices, or ergonomic adjustments, may help you stay on the job.
A conversation with your doctor or a vocational (work) counselor who understands chronic conditions can also help you explore options that support your health and independence.
Myth: No medications help PPMS, so you should investigate natural remedies
Fact: There are FDA-approved medications that can help slow the progression of PPMS, including ocrelizumab. While some natural remedies might offer symptom relief, they aren't always safe or proven to be effective.
For years, there were no FDA-approved treatments for PPMS. That changed in 2017 when Ocrevus (ocrelizumab) became the first medication approved specifically for PPMS.
In a study of 732 people with PPMS, those who received Ocrevus experienced a slower rate of disability progression compared to those who received a placebo. It remains the only approved disease-modifying therapy for this form of MS.
Doctors may also prescribe medications to manage specific symptoms, such as antidepressants for mood changes or muscle relaxants for spasms.
Some people turn to natural remedies like herbal supplements, acupuncture, or cannabis. Research into these options is ongoing, but so far, there's no strong evidence that they're safe or effective for treating MS symptoms. Some supplements can even interact with prescription drugs.
If you're considering natural treatments, talk with your doctor first to avoid potential side effects or interactions.
Myth: PPMS is ultimately an isolating disease — no one will understand what you're going through
Fact: You're not alone, and you don't have to go through it alone either.
While PPMS can feel isolating at times, many others are navigating similar challenges. It's estimated that nearly 1 million people in the United States are living with MS, and about 10% to 15% of them have PPMS.
Thanks to growing awareness and advocacy, there are now more resources and support networks than ever. Support groups, both in-person and online, offer a space to connect with others who understand what you're going through.
If group support isn't for you, that's OK too. Talking with a trusted friend, loved one, or therapist can still help ease feelings of isolation and improve emotional well-being. What matters most is finding a form of support that feels right for you.
Myth: PPMS is deadly
Fact: PPMS is a lifelong condition, but it's rarely fatal.
The progressive nature of PPMS and the fact that there's no cure can understandably lead to fears about long-term outcomes. But while PPMS can affect mobility, thinking, and daily functioning, it's not considered a life threatening illness.
Most people with MS who don't have severe disabilities can expect to live another 30 to 35 years after diagnosis. Recent research has shown that even after significant disease progression, many people continue to live for years. For example, after someone loses the ability to walk independently, on average, at around age 51, life expectancy is about 13 more years.
Advances in treatment, early intervention, and lifestyle changes can help manage symptoms, reduce complications, and support overall health.
Taking care of your physical and emotional well-being through exercise, a balanced diet, regular checkups, and support can make a big difference in quality of life.
It's important to note that with ongoing advances in treatment, the outlook for people with PPMS continues to improve. Current data on disability and life expectancy may not reflect what's possible in the future.
Takeaway
Misconceptions about primary progressive multiple sclerosis (PPMS) can add confusion and fear to an already complex condition. However, the reality is that PPMS doesn't always follow the path people expect.
From treatment options to life expectancy, the facts paint a more hopeful and nuanced picture. While every experience with PPMS is different, understanding the reality behind the myths can help you make informed choices, find support, and feel more in control of your journey.
