Frequently Asked Questions about PPMS - National Multiple Sclerosis Society

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Frequently Asked Questions about PPMS

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If the available disease-modifying medications are helpful in other disease courses, why don’t they work in primary-progressive MS (PPMS)?

The disease-modifying medications we currently have available (Avonex, Betaseron, Copaxone, Novantrone, Rebif, and Tysabri) 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. For example, people with progressive-relapsing MS will experience occasional relapses along their generally progressive course, but those relapses don’t occur right away and are usually few and far between. Only after a period of time would the doctor know for sure what course the person was experiencing. 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.

Even when a person has PPMS, some physicians feel that it worth while trying a disease-modifying therapy for a period of time to see if it reduces disease activity. Even though none of the disease-modifying therapies have been shown to be effective in PPMS, they feel that these medication will not do any harm and may turn out to provide some benefit. Your best bet is to have a follow-up discussion with your doctor to ask about your disease course and his rationale for prescribing a disease-modifying therapy at this time. 

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My doctor has told me I have PPMS, but she wants me to try one of the disease-modifying therapies anyway. Should I take a medication that hasn’t been approved for my type of MS?

Prescribing a medication for something other than its approved use is known as “prescribing off-label.” In other words, the physician is prescribing the medication for a purpose other than the use(s) listed in the FDA-approved labeling for that medication. There is no rule that says a physician can’t do this and, in fact, virtually all of the medications used to treat MS symptoms are prescribed off-label because they have never been approved specifically for use in MS. A doctor will prescribe a medication that he or she feels will be beneficial and safe, even if it is not specifically approved for that use. Your doctor apparently feels that the disease-modifying medication may provide some benefit for you without causing you any harm. After a period of several months or a year, you and your doctor will review the situation to determine if continuing with the medication is appropriate. It is important to take into consideration, however, that your insurance company may not be willing to pay for the medication if it is being used off-label.

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My doctor has said that there are no medications that have been shown to be effective for PPMS, but I want to try one anyway. I can’t stand the idea of “doing nothing” about my MS — should I look for another doctor who will prescribe one for me?

The more important question to ask yourself is whether you are working with a physician you trust and with whom you feel comfortable. Treating MS involves more than taking a disease-modifying medication; it means working with your physician and other members of the healthcare team to manage your symptoms, promote your wellness and comfort, and enhance your quality of life. If your doctor has said that the medications aren’t effective in PPMS and there is nothing else to offer, you may choose to look for another physician. If, however, your doctor wants to help you with symptom management, proactive rehabilitation to optimize your mobility, safety, and independence, and overall wellness, you may already have the best possible partner for your MS care.

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My doctor prescribed a DMT for me but my insurance company won’t pay for it because my MS is primary-progressive. Now what am I supposed to do?

Many insurance companies are unwilling to pay for an off-label (non-FDA-approved) use of a medication. If your doctor believes that the medication is appropriate for you, even though it has not been approved for use in primary-progressive MS, he or she can appeal the company’s decision with a letter describing the rationale for treatment. There is no guarantee that this strategy will be successful, but it may be worth trying. Even if the coverage continues to be denied, there is still much that you and your doctor can do to manage your MS — including managing your symptoms, enhancing your mobility, safety, and independence, and promoting your overall health and quality of life.

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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. It is not possible to stop the progression from occurring, but 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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If you or somone close to you has recently been diagnosed, access our MS information and resources.

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