Should I have disease-modifying therapy for multiple sclerosis?
Introduction
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 usually recommend starting treatment with either interferon beta or glatiramer acetate when MS is diagnosed. 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. The National MS Society also says that treatment with medicine may be considered after the first attack in some people who are at a high risk for MS (before MS is definitely diagnosed).1
- Mitoxantrone (Novantrone) is considered when other treatments fail to control symptoms or progression of the disease. Natalizumab (Tysabri) is recommended when other medicines for MS do not work or if the side effects of another medicine for MS are severe.
- 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, glatiramer acetate, or natalizumab 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. The side effects are different for each medicine. Some may cause flu-like symptoms such as fever, chills, fatigue, and muscle aches. Others may cause allergic reactions to the shot, infections (some can be serious), headaches, tiredness, and joint pain. One medication can even damage your heart (mitoxantrone). Another may cause a serious and life-threatening disease called PML. This medicine (natalizumab) is tightly controlled because of this side effect.
- 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.
- Not much is known about the safety of using disease-modifying therapy during pregnancy or breast-feeding. If you are pregnant, planning on becoming pregnant soon, or breast-feeding, talk to your doctor.
Medical Information
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:
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).2
- 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.2
- 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.3
- Natalizumab (Tysabri) can decrease relapse rates in people with relapsing-remitting MS. It can also decrease the chance that a person with MS will be permanently disabled.4, 5 Natalizumab (Tysabri) is typically used when other medicines for MS do not work or if the side effects of another medicine for MS are severe. This is because it may cause a serious and life-threatening disease called PML. Natalizumab is tightly controlled because of this possible side effect.
- Early treatment, beginning as soon as relapsing MS is diagnosed, seems to be most effective and is recommended by the National Multiple Sclerosis Society. The National MS Society also says that treatment with medicine may be considered after the first attack in some people who are at a high risk for MS (before MS is definitely diagnosed).1
If you need more information, see the topic Multiple Sclerosis.
Your Information
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 you to give yourself a shot 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.
- Most 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
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 a shot one or more 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.
| Author: | Monica Rhodes | Last Updated: February 28, 2008 |
| Medical Review: | Anne C. Poinier, MD - Internal Medicine Colin Chalk, MD, CM, FRCPC - Neurology | |
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