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Multiple Sclerosis: Should I Start Taking Medicines for MS?
You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.
Multiple Sclerosis: Should I Start Taking Medicines for MS?
Get the facts
- Take medicines after your first attack of multiple sclerosis or as soon as you are diagnosed.
- Don't take medicines now. Wait to see how the disease progresses.
Key points to remember
- Your doctor may suggest medicines after your first attack or when multiple sclerosis (MS) is first diagnosed. Lasting damage to the nervous system can occur in the early stages of MS. Early treatment may prevent or delay some of this damage.
- Some people wait to see if their symptoms get worse before they make a decision to start taking MS medicines. Instead of medicines, you can try physical therapy, occupational therapy, and steroid shots to help you manage your symptoms.
- It's hard to know the course that your MS will take. Doctors can't know for sure if your MS will get worse. A small number of people with MS have only mild disease and do well without treatment. But many get worse over time.
- Medicines can reduce the severity of attacks of relapsing-remitting MS and how often you have them. They may also reduce or delay disability. But they don't work for everyone. And there is no way to predict if they will work for you.
- These medicines have side effects that can range from flu-like symptoms to headaches, chest pain, flushing, infections, and allergic reactions to the injection. Some of these medicines can damage your liver or heart.
- These medicines are costly. Your cost will depend on your health plan coverage.
Multiple sclerosis, often called MS, is a disease that affects the central nervous system—the brain, spinal cord, and optic nerves. It can cause problems with muscle control and strength, vision, balance, feeling, and thinking.
Your nerve fibers have a protective covering called myelin. Without myelin, the brain and spinal cord can't communicate with the nerves in the rest of the body. MS slowly destroys myelin and nerve cells in the central nervous system, causing muscle weakness and other symptoms.
Most of the time, MS is not diagnosed unless a doctor can be sure you have had at least two attacks affecting at least two different areas of your central nervous system. Your doctor will examine you, ask you questions about your symptoms, and do some tests. An MRI scan is often used to confirm the diagnosis, because the patches of damage (lesions) caused by MS attacks can be seen with MRI.
MS is different for each person. You may go through life with only minor problems. Or you may become seriously disabled. Most people are somewhere in between. In general, MS follows one of four courses:
- Relapsing-remitting, which means symptoms fade and then return off and on for many years.
- Secondary progressive, which at first follows a relapsing-remitting course and then becomes progressively worse. "Progressive" means it gets worse over time.
- Primary progressive, which means the disease is progressive from the start.
- Progressive relapsing, which means the symptoms are progressive at first and are relapsing later.
Disease-modifying therapy means treatment to delay, change, or interrupt the natural course of the disease. For MS, this means taking medicine over a long period of time to reduce not only the number of attacks but also how bad they are.
To slow down the spread of MS, your doctor may suggest medicines after your first attack or when you are first diagnosed with MS. People treated soon after being diagnosed with MS may have better results than those who delay treatment. Lasting damage to the nervous system can occur in the early stages of MS. Early treatment may prevent or delay some of this damage.
Medicines for MS can be costly. They don't work for everyone. And it's hard to know who will benefit.
Medicines used for MS include:
- Interferon beta (such as Betaseron).
- Glatiramer (Copaxone).
- Fingolimod (Gilenya).
Making a decision about starting disease-modifying therapy can be hard, especially if your symptoms have been mild. Some people wait to see if their symptoms get worse before they make a decision to start therapy. A small number of people with MS may never have more than a few mild episodes and never have any disability. But there is no way to know who will fall into this group.
Medicines can't cure MS. They don't stop disease activity or reverse nervous system damage that has already happened. But drugs may reduce relapses and delay disability in many people with relapsing forms of MS.
For people who have relapsing-remitting MS:
- Interferon beta can reduce how often you have relapses and how bad those relapses are. These drugs may also delay disability in some people and may limit new patches of damage (lesions).1
- Glatiramer can make relapses less severe. It can also reduce how often you have them, like the interferon beta drugs. It also slows the number of new lesions and decreases the chances of disability.2
- Fingolimod can reduce how often you have relapses.3 It is the only medicine for MS that you can take by mouth (oral).
If you decide not to try disease-modifying therapy at this time, work with your doctor to monitor your health through regular checkups and periodic MRI scans to evaluate whether the disease is progressing. If new lesions are developing or existing lesions are growing, you may want to reconsider your decision and begin treatment.
If you decide not to take MS medicines, there are some other things you can do.
- Take other medicine, such as steroid medicine, to relieve symptoms during attacks or relapses.
- Try physical therapy, occupational therapy, and other treatment you can do at home to help you manage your symptoms and adjust to living and working with MS.
- Do what you can to stay well. Eat a healthy diet, get plenty of rest, and try to reduce stress.
This section focuses on glatiramer and interferon beta, the most commonly used MS medicines.
|Risks||With medicine||Without medicine|
|Progression from early symptoms to diagnosis of MS||34 to 35 out of 100||45 to 58 out of 100|
|Need for hospitalization within 2 years||12 out of 100||20 out of 100|
*Based on the best available evidence (evidence quality: borderline to inconclusive)
|Side effects||With medicine||With placebo|
|Flu-like symptoms (interferon beta)||48 out of 100||28 out of 100|
|Flushing, chest tightness, sweating, heart palpitations, anxiety, and shortness of breath (glatiramer)||24 out of 100||7 out of 100|
*Based on the best available evidence (evidence quality: moderate to borderline)
The evidence suggests a slight positive effect for people with relapsing-remitting multiple sclerosis. But the quality of the evidence isn't good. It is borderline to inconclusive.
If you have had some early symptoms of MS but don't have a clear diagnosis yet, medicine may reduce the chance that your symptoms will progress to full-blown MS. Take a group of 100 people who have had an MS-like episode but do not yet have an MS diagnosis:
- Without medicines, 45 to 58 out of 100 may progress to an MS diagnosis. This means that 42 to 55 may not.
- With MS medicines, 34 to 35 out of 100 may progress to an MS diagnosis. This means that 65 to 66 may not.
Your risk of needing a hospital stay over the next 2 years may be lower if you take medicines than if you don't. Take a group of 100 people who have MS:
- Without MS medicines, 20 people out of 100 may need to be hospitalized over the next 2 years, while 80 out of 100 may not.
- With MS medicines, 12 out of 100 may need to be hospitalized over the next 2 years, while 88 out of 100 may not.
Many people who take MS medicines have uncomfortable side effects. Take a group of 100 people who have MS:
- With interferon beta, 48 out of 100 may have flu-like symptoms. This means that 52 out of 100 may not. The quality of the evidence about this is moderate.
- With glatiramer, 24 out of 100 may have symptoms such as flushing, chest tightness, sweating, heart palpitations, anxiety, and shortness of breath. This means that 76 out of 100 may not. The quality of the evidence about this is borderline.
Understanding the evidence
Some evidence is better than other evidence. Evidence comes from studies that look at how well treatments and tests work and how safe they are. For many reasons, some studies are more reliable than others. The better the evidence is—the higher its quality—the more we can trust it.
Another thing to understand is that the evidence can't predict what's going to happen in your case. When evidence tells us that 2 out of 100 people who have a certain test or treatment may have a certain result and that 98 out of 100 may not, there's no way to know if you will be one of the 2 or one of the 98.
The National Multiple Sclerosis Society recommends that people with a definite diagnosis of MS and active, relapsing disease start treatment with interferon beta or glatiramer. Most neurologists support this recommendation and now agree that permanent damage to the nervous system may occur early on, even while symptoms are still quite mild. Early treatment may help prevent or delay some of this damage. In general, treatment is recommended until it no longer provides a clear benefit.
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).8
Your doctor may suggest that you take MS medicines because:
- You have had symptoms that are most likely caused by multiple sclerosis, tests show you most likely have MS, and your doctor is confident that you have MS.
- You have just been diagnosed with multiple sclerosis, and early treatment may delay damage to your central nervous system.
- These medicines are the only ones proved to reduce the frequency and severity of relapses and delay disability.
Compare your options
What is usually involved?
What are the benefits?
What are the risks and side effects?
- You give yourself a shot either daily, weekly, or several times a week (interferon beta or glatiramer).
- You take a pill every day (fingolimod).
- You visit your doctor regularly for blood tests and to check your progress.
In people with relapsing-remitting MS:
- These drugs can make relapses less severe and reduce how often they occur.
- Medicines can slow the spread of the disease by limiting new areas of damage in the brain.
- These drugs can reduce the chance of disability.
- These drugs don't work for everyone. It is hard to predict who will benefit.
- These medicines are costly.
- The long-term risks of some of these drugs are not known.
- Side effects of these medicines can include flu-like symptoms, headaches, depression, chest pain, anxiety, flushing, and redness and swelling at the injection site.
- You visit your doctor regularly to check your progress.
- You try steroid medicine to treat relapses.
- You try physical therapy, occupational therapy, and other treatment at home to adjust to living with MS.
- You avoid the risks and cost of medicines that you might not need or that may not work for you.
- You avoid taking medicine for multiple sclerosis if you end up being diagnosed with a different condition.
- You may have a hard time dealing with relapses.
- You may have a higher chance of becoming disabled.
- Long-term use of steroid medicine may lead to other problems such as stomach ulcers, problems sleeping, and high blood pressure.
Personal stories about treatment for multiple sclerosis
These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.
The MS episodes I've had were fairly mild, but I'm worried that next time the symptoms will be more severe. I don't think I'm being pessimistic by deciding to take interferon. I think I'm giving myself the best chance to live a long and healthy life.
Victor, age 29
I have never been much of a risk-taker, and my health is definitely not something I want to risk. My doctor recommends that I take the medicine. Even if it turns out that I might not have needed treatment for MS, I would rather err on the side of caution by starting therapy now. I know I would really regret not doing the treatment if I had a relapse a year from now or even a few years from now.
Carmen, age 37
I generally try to avoid medicine when I can. My doctor really thinks it would be a good idea for me to take the medicine, but I don't want to deal with the side effects, and I'm not sure I like the idea of giving myself shots on a regular basis. I don't want to take medicine "just in case" I have problems with MS later. Besides, I can always reconsider if and when I have another episode.
Jamal, age 34
What matters most to you?
Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.
Reasons to start taking medicine for MS
Reasons not to start taking medicine for MS
I want to try the medicine now, even though it might not work.
I don't want to take the medicine if it might not work.
I worry that if I don't start treatment now, I may be sorry later.
I want to wait to see if my MS gets worse.
I don't mind giving myself shots.
I don't want to give myself shots.
I'm willing to live with the side effects of medicine.
I don't know if I can handle the side effects of medicine.
I want to do whatever I can to make my attacks happen less often.
I want to try to handle my attacks without medicine.
My other important reasons:
My other important reasons:
Where are you leaning now?
Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.
NOT taking medicine
What else do you need to make your decision?
Check the facts
Do medicines work for everyone who has MS?
- YesSorry, that's not right. Medicines can reduce the severity of attacks and may prevent or delay disability. But they don't work for everyone.
- NoYou're right. Medicines can reduce the severity of attacks and may prevent or delay disability. But they don't work for everyone.
- I'm not sureIt may help to go back and read "How well do medicines work for MS?" Medicines can reduce the severity of attacks and may prevent or delay disability. But they don't work for everyone.
Can medicines help prevent some nervous system damage from MS?
- YesYou're right. Early treatment may prevent or delay some nervous system damage.
- NoSorry, that's not right. Early treatment may prevent or delay some nervous system damage.
- I'm not sureIt may help to go back and read "What medicines are taken for MS?" Early treatment may prevent or delay some nervous system damage.
If you decide not to start medicines now, are there other things you can try?
- YesYou're right. Instead of medicines, you can try physical therapy, occupational therapy, and steroid shots to help manage your symptoms.
- NoSorry, that's not right. Instead of medicines, you can try physical therapy, occupational therapy, and steroid shots to help manage your symptoms.
- I'm not sureIt may help to go back and read "What if you don't take MS medicines?" Physical therapy and steroid shots are two things you can try.
Decide what's next
Do you understand the options available to you?
Are you clear about which benefits and side effects matter most to you?
Do you have enough support and advice from others to make a choice?
How sure do you feel right now about your decision?
Use the following space to list questions, concerns, and next steps.
Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.
|Primary Medical Reviewer||Adam Husney, MD - Family Medicine|
|Primary Medical Reviewer||Anne C. Poinier, MD - Internal Medicine|
|Specialist Medical Reviewer||Barrie J. Hurwitz, MD - Neurology|
|Specialist Medical Reviewer||Colin Chalk, MD, CM, FRCPC - Neurology|
- Rowland LP (2010). Multiple sclerosis. In LP Rowland, TA Pedley, eds., Merritt’s Neurology, 12th ed., pp. 902–918. Philadelphia: Lippincott Williams and Wilkins.
- Mikol DD, et al. (2008). Comparison of subcutaneous interferon beta-1a with glatiramer acetate in patients with relapsing multiple sclerosis (the REbif vs Glatiramer Acetate in Relapsing MS Disease [REGARD] study): A multicentre, randomised, parallel, open-label trial. Lancet Neurology, 7(10): 903–914.
- Cohen JA, et al. (2010). Oral fingolimod or intramuscular interferon for relapsing multiple sclerosis. New England Journal of Medicine, 362(5): 402–415.
- LaMantia L, et al. (2010). Glatiramer acetate for multiple sclerosis. Cochrane Database of Systematic Reviews (5).
- Ford C, et al. (2010). Continuous long-term immunomodulatory therapy in relapsing multiple sclerosis: Results from the 15-year analysis of the US prospective open-label study of glatiramer acetate. Multiple Sclerosis, 16(3): 342–350.
- Smith B, et al. (2010). Drug Class Review: Disease-Modifying Drugs for Multiple Sclerosis: Final Update 1 Report. Portland, OR: Oregon Health and Science University. Available online: http://www.ncbi.nlm.nih.gov/books/NBK50570.
- Rice GPA, et al. (2001). Interferon in relapsing-remitting multiple sclerosis. Cochrane Database of Systematic Reviews (4).
- National Clinical Advisory Board of the National Multiple Sclerosis Society (2008). Disease Management Consensus Statement. New York: National Multiple Sclerosis Society. Available online: http://www.nationalmssociety.org/for-professionals/healthcare-professionals/publications/expert-opinion-papers/index.aspx.