Should I have disease-modifying therapy for multiple sclerosis?

Introduction

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This information will help you understand your choices, whether you share in the decision-making process or rely on your doctor's recommendation.

Key points in making your decision

Your decision about whether to treat multiple sclerosis (MS) with medications—called disease-modifying therapy—will depend largely on your doctor's recommendation and your own views about the benefits and drawbacks of treatment. Disease-modifying means treatment to delay, change, or interrupt the natural course or progression of a disease.

Consider the following when making your decision:

• The National Multiple Sclerosis Society and most neurologists recommend starting treatment with either interferon beta or glatiramer acetate as soon as MS is diagnosed. Mitoxantrone (Novantrone) is considered when other treatments fail to control symptoms or progression of the disease. Most experts now agree that permanent damage to the nervous system may occur early on, even while your symptoms are still quite mild. Early treatment may help prevent or delay this damage.
• MS is unpredictable. Doctors cannot know with certainty whether you will progress to a more severe form of the disease. A small number of people with MS have only mild disease and do well without treatment, but most get worse over time.
• Interferon beta or glatiramer acetate can reduce the frequency and severity of attacks of relapsing-remitting MS and may reduce or delay disability. However, doctors cannot predict whether the medications will work for you.
• Disease-modifying medications for MS may have significant side effects, including flu-like symptoms such as fever, chills, fatigue, and muscle aches. One medication can even damage your heart (mitoxantrone).
• These medications are expensive; your cost will depend on your insurance coverage. However, some foundations and other organizations pay for MS treatment for those who cannot afford it; financial costs alone should not keep you from considering treatment.

Medical Information

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What is multiple sclerosis?

Multiple sclerosis (MS) is a disease of the central nervous system (CNS) that can cause problems with muscle control and strength, balance, vision, and sensation (such as numbness or tingling in your feet or hands).

The symptoms of MS are caused by inflammation of the CNS and the destruction of myelin , the coating that surrounds and protects nerve fibers (axons). The resulting damage disrupts the normal flow of nerve impulses through the brain, spinal cord, and nerves that control how a person moves and feels.

In general, MS follows one of four courses, which are called:

• Relapsing-remitting.
• Secondary progressive.
• Primary progressive.
• Progressive relapsing.

The severity of MS differs from person to person and can vary within one person over time. Some people have only mild problems with vision or sensation, while others have severe problems with movement, causing disability.

How is multiple sclerosis diagnosed?

Health professionals diagnose the disease when damage typical of MS has occurred to more than one area of the brain or spinal cord at more than one point in time. This means that you have had at least two episodes of signs and symptoms that could be caused by MS, such as weakness or clumsiness, vision problems, tingling or numbness, or balance problems that a neurologist can verify.

Each episode must have lasted at least 24 hours, and the episodes should have occurred at least 1 month apart. If you have MS, a magnetic resonance imaging (MRI) test usually shows damage (lesions or plaques) in more than one area of the brain or spinal cord.

How effective are medications for MS?

Medications cannot cure MS at this time. They do not stop disease activity or progression, and they do not reverse nervous system damage that has already occurred. However, medications may reduce relapses and delay disability in many people with relapsing forms of MS. Studies have shown that:

• For people with relapsing-remitting MS, interferon beta (Avonex, Rebif, or Betaseron) can reduce the severity of relapses, and decrease their frequency by about one-third. They may also delay disability in some people, and decrease the occurrence of new areas of damage (lesions).¹ High doses of interferon beta given more frequently (such as 3 times per week) is more effective than lower doses given less often.^{2, 3}
• Glatiramer acetate (Copaxone) can make relapses less severe. It can also decrease their frequency by about one-third, like the interferon beta drugs. But less is known about the effect on MS lesions or on the development of disability. Doctors often use glatiramer acetate in milder cases of MS.¹
• Mitoxantrone (Novantrone) can also slow disease progression and decrease relapse rates in people with relapsing-remitting and secondary progressive MS, but with a greater chance of side effects.⁴
• Early treatment, beginning as soon as relapsing MS is diagnosed, seems to be most effective and is recommended by the National Multiple Sclerosis Society.⁵

If you need more information, see the topic Multiple Sclerosis.

Your Information

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Your choices are:

• Take disease-modifying medications as soon as you are diagnosed with MS. Research shows that treatment at diagnosis may result in fewer and less severe relapses and may delay damage to the nervous system.
• Wait to see how the disease progresses.

The decision about whether to take medications for MS takes into account your personal feelings and the medical facts.

Deciding whether to take medications

Reasons to take disease-modifying medications

Reasons not to take disease-modifying medications

Experts recommend treatment as soon as MS is diagnosed, because early treatment may result in fewer and less severe relapses and may delay damage to your central nervous system; waiting may be harmful. Most people will have repeated attacks of symptoms. These treatments are the only ones proven to reduce the frequency and severity of attacks (relapses) and to delay disability. Side effects from the medications frequently stop in many people after 2 to 3 months of treatment. Many people get used to injecting themselves with medication. Insurance may cover most or all of the cost of medication. Even when symptoms are mild, permanent damage may occur. Are there other reasons you might want to take medications for MS?

It's hard to predict who will respond well to medication. A few people may have an initial episode of symptoms and then not have another for months or years. A small number of people have only mild symptoms and do well without medication. Some of the medications can have significant side effects, including flu-like symptoms and depression, that may be debilitating for some people. These medications require injections one or more times a week. Treatment can cost up to $15,000 a year, and not everyone has insurance that will pay for medication. Medication may become less effective after several years of use. Some medications are not recommended around the time of conception or when you are pregnant or breast-feeding. Are there other reasons you might not want to take medications for MS?

These personal stories may help you make your decision.

Wise Health Decision

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Use this worksheet to help you make your decision. After completing it, you should have a better idea of how you feel about taking disease-modifying medication. Discuss the worksheet with your doctor.

Circle the answer that best applies to you.

I want to follow the advice of experts, who say that early treatment might reduce relapses and delay disability.	Yes	No	Unsure
I am willing to take medication even though there is no way to predict whether it will work for me.	Yes	No	Unsure
I have only had one attack of symptoms and want to wait to see if I have any more relapses before taking medication.	Yes	No	Unsure
I am worried about the side effects of the medications.	Yes	No	Unsure
I am willing to accept side effects if the medications might help me.	Yes	No	Unsure
I am comfortable giving myself shots one to three times a week.	Yes	No	Unsure
My insurance will cover most or all of the cost of treatment.	Yes	No	Unsure

Use the following space to list any other important concerns you have about this decision.

What is your overall impression?

Your answers in the above worksheet are meant to give you a general idea of where you stand on this decision. You may have one overriding reason to use or not use disease-modifying medications for MS.

Check the box below that represents your overall impression about your decision.

Leaning toward taking medication

Leaning toward NOT taking medication

Return to the topic Multiple Sclerosis.

References

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Citations

1. Sadiq SA (2005). Multiple sclerosis. In LP Rowland, ed., Merritt's Neurology, 11th ed., pp. 941–963. Philadelphia: Lippincott Williams and Wilkins.

2. Durelli L, et al. (2002). Every-other-day interferon beta-1b versus once-weekly interferon beta-1a for multiple sclerosis: Results of a 2-year prospective randomised multicentre study (INCOMIN). Lancet, 359(9316): 1453–1460.

3. Panitch H, et al. (2002). Randomized, comparative study of interferon beta-1a treatment regimens in MS: The evidence trial. Neurology, 59(10): 1496–1506.

4. Stuart WH, Vermersch P (2004). Concomitant therapy for multiple sclerosis. Neurology, 63(Suppl 5): S28–S34.

5. Medical Advisory Board of the National Multiple Sclerosis Society (2005). Disease Management Consensus Statement, Expert Opinion Paper, Treatment Recommendations for Physicians. New York, NY: National Multiple Sclerosis Society.

Credits

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Author	Shannon Erstad, MBA/MPH
Editor	Kathleen M. Ariss, MS
Associate Editor	Michele Cronen
Associate Editor	Pat Truman
Primary Medical Reviewer	Kathleen Romito, MD - Family Medicine
Specialist Medical Reviewer	Barrie J. Hurwitz, MD - Neurology
Last Updated	March 23, 2006