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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. In additional 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 (also called plaques) 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 neural damage that occurs in PPMS.  

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My doctor hasn’t told me what kind of MS I have but he recommends that I start on a disease-modifying therapy. Why can’t he tell me what disease course I have? Will the medication harm me if I have PPMS?

Your doctor may still be unsure which disease course you have. While physicians and scientists have identified four courses of MS, each person’s disease course is unique, and may not fit precisely within one or another. It may take time for the doctor to decide which course a person’s MS is following. People who are transitioning from the more inflammatory relapsing-remitting disease course to the less inflammatory secondary-progressive disease course may or may not continue to have any relapses — and it may be a while before the doctor can determine when that transition has occurred. This information would be factored into the decision about which disease-modifying therapy would be right for you. If your doctor determines that you have PPMS, he or she may recommend that you start Ocrevus – a medication that has been approved by the FDA for the treatment of PPMS as well as relapsing forms of MS. 

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My MS just keeps on 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 problems with gait. Lesions in the spinal cord can also cause bladder and bowel symptoms, as well as sexual dysfunction, and fatigue. Lesions in the brain could cause other symptoms to develop, including visual disturbance, cognitive changes, and 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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Our MS Navigators help identify solutions and provide access to the resources you are looking for. Call 1-800-344-4867 or contact us online.

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Newly Diagnosed
If you or somone close to you has recently been diagnosed, access our MS information and resources.

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