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
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:
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:
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:
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.
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:
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:
Many people who take MS medicines have uncomfortable side effects. Take a group of 100 people who have MS:
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.
The information shown here is based on the best available evidence.4, 5, 6, 7 The evidence is rated using four quality levels: high, moderate, borderline, and inconclusive.
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:
Compare your options
Compare
What is usually involved? |
| |
What are the benefits? |
| |
What are the risks and side effects? |
|
In people with relapsing-remitting MS:
Personal stories
Are you interested in what others decided to do? Many people have faced this decision. These personal stories may help you decide.
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.
Taking medicine
NOT taking medicine
What else do you need to make your decision?
Check the facts
Do medicines work for everyone who has MS?
Can medicines help prevent some nervous system damage from MS?
If you decide not to start medicines now, are there other 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?
Certainty
How sure do you feel right now about your decision?
Check what you need to do before you make this decision.
Use the following space to list questions, concerns, and next steps.
Your Summary
Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.
Next steps
Which way you're leaning
How sure you are
Your comments
Key concepts that you understood
Key concepts that may need review
Patient choices
| Credits | Healthwise Staff |
|---|---|
| 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 |
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:
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:
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:
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.
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 :
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 :
Many people who take MS medicines have uncomfortable side effects. Take a group of 100 people who have MS :
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.
The information shown here is based on the best available evidence.4, 5, 6, 7 The evidence is rated using four quality levels: high, moderate, borderline, and inconclusive.
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:
| Take MS medicines | Don't take MS medicines | |
|---|---|---|
| What is usually involved? |
|
|
| What are the benefits? | In people with relapsing-remitting MS:
|
|
| What are the risks and side effects? |
|
|
Are you interested in what others decided to do? Many people have faced this decision. These personal stories may help you decide.
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
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:
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.
Taking medicine
NOT taking medicine
1. Do medicines work for everyone who has MS?
2. Can medicines help prevent some nervous system damage from MS?
3. If you decide not to start medicines now, are there other things you can try?
1. Do you understand the options available to you?
2. Are you clear about which benefits and side effects matter most to you?
3. Do you have enough support and advice from others to make a choice?
1. How sure do you feel right now about your decision?
2. Check what you need to do before you make this decision.
3. Use the following space to list questions, concerns, and next steps.
| By | Healthwise Staff |
|---|---|
| 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 |
Last Revised: August 25, 2012