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Frequently Asked Questions about PPMS

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What medications are available to treat primary progressive MS (PPMS)?

One medication – Ocrevus® (ocrelizumab) has been approved by U.S. Food & Drug Administration (FDA) to treat primary progressive MS as well as relapsing forms of MS, which include clinically isolated syndrome, relapsing-remitting disease (RRMS) and active secondary progressive disease (SPMS with relapses).  In addition to this disease-modifying therapy, a wide range of symptomatic medications and rehabilitation strategies are used to manage PPMS.
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If the other approved disease-modifying medications are helpful in relapsing MS, why don’t they work in PPMS?

The other disease-modifying medications we currently have available primarily target inflammation in the central nervous system (CNS). They have all been shown to reduce the number of acute relapses (also called attacks or exacerbations) and number of new lesions (also called plaques) on magnetic resonance imaging (MRI) scans. PPMS involves much less inflammation and more gradual destruction and loss of nerve fibers. As a result, people with PPMS tend to have fewer brain lesions than people with relapsing MS, and the lesions tend to contain fewer inflammatory cells. The available disease-modifying medications are not effective in slowing the nerve damage that occurs in PPMS.  

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My MS just keeps getting worse. Does everyone with PPMS become severely disabled?

MS is a variable and unpredictable disease. Although PPMS is characterized by fairly steady progression, one person’s symptoms may progress differently or more rapidly than someone else’s symptoms. Because spinal cord lesions (also called plaques) are more common than brain lesions in PPMS, problems with walking are very common, but other symptoms may occur as well. The medication, Ocrevus®, has been approved to treat PPMS as well as relapsing forms of MS. This medication may slow the progression you are experiencing. At the same time, ongoing symptom management and rehabilitation strategies can help you stay active, maintain your safety and independence, and enhance your quality of life. 

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I’ve read about all the different symptoms that MS can cause, but since my diagnosis with PPMS my biggest problem has been with my walking. Will I develop all the other symptoms as well?

Because people with PPMS tend to have more spinal cord lesions than brain lesions, problems with walking are very common. In fact, the onset of PPMS is usually characterized by gradually increasing walking problems and fatigue. Lesions in the brain could cause other symptoms to develop, including visual disturbance, cognitive changes, mood changes, balance problems, and tremor, among others. However, there is no way to predict this ahead of time, and your primary challenge may continue to be with walking.

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