Multiple sclerosis: Should I start taking medicines for MS?

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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

Your options

  • Take medicines as soon as you are diagnosed with multiple sclerosis.
  • Don't take medicines now. Wait to see how the disease progresses.

Key points to remember

  • Your doctor may suggest medicines 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 physiotherapy, 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, infections, and allergic reactions. One type of medicine may damage your heart.
  • These medicines are costly. Your provincial health plan may cover most or all of the cost of your medicines. Ask your doctor or contact your provincial health plan for more information.
FAQs

What is multiple sclerosis?

Multiple sclerosis, often called MS, is a disease that affects the central nervous system—the brain and spinal cord. It can cause problems with muscle control and strength, vision, balance, feeling, and thinking.

Your nerve cells 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 in the brain and spinal cord, 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. Your doctor will examine you, ask you questions about your symptoms, and do some tests. An MRI 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 progressive. "Progressive" means it gets worse over time.
  • Primary progressive, which means the disease is progressive from the start.
  • Progressive relapsing, which means the symptoms come and go, but nerve damage gets worse over time.

What medicines are taken for MS?

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 the number of attacks and how bad they are.

To slow down the spread of MS, your doctor may suggest medicines 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.

Two types of medicines are commonly used to reduce how often relapses occur. These drugs can be costly. They don't work for everyone. And it's hard to know who will benefit.

Mitoxantrone is another medicine used to treat MS. While mitoxantrone is not officially approved in Canada for MS treatment, some doctors are using the medicine for relapsing-remitting MS that is rapidly getting worse or when other medicines for MS have not worked.

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.

How well do medicines work for MS?

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.

The Canadian MS Clinics Network and the Multiple Sclerosis Society of Canada (MSSC) stress the importance of early treatment for MS. The MSSC is working to ensure that people who could benefit from treatment have access to it.1

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).2
  • 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.3

Mitoxantrone is another medicine used to treat MS. While mitoxantrone is not officially approved in Canada for MS treatment, some doctors are using the medicine for relapsing-remitting MS that is rapidly getting worse or when other medicines for MS have not worked.

Another drug, natalizumab (Tysabri) can also decrease relapse rates. It can lower the chances that a person with MS will be permanently disabled.4 But it can cause serious side effects and is only used when other drugs don't work.

What if you don't take MS medicines?

If you decide not to take MS medicines, there are some other things you can do.

Why might your doctor recommend these medicines?

Your doctor may suggest that you take MS medicines because:

  • 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

Compare

What is usually involved?









What are the benefits?









What are the risks and side effects?









Take MS medicines Take MS medicines
  • You give yourself a shot either daily, weekly, or several times a week (interferon beta or glatiramer).
  • If you take mitoxantrone, you receive the drug through a vein (IV) in your arm every 3 months for up to 3 years. You will need a test to check your heart before each injection.
  • 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 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.
  • Mitoxantrone carries a risk of serious heart damage in some people.
Don't take MS medicines Don't take MS medicines
  • You avoid the risks and cost of medicines that you might not need or that may not work for you.
  • You may have a hard time dealing with attacks and 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

Are you interested in what others decided to do? Many people have faced this decision. These personal stories may help you decide.

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

For more information, see the topic Multiple Sclerosis.

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.

More important
Equally important
More important

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.

More important
Equally important
More important

I don't mind giving myself shots.

I don't want to give myself shots.

More important
Equally important
More important

I'm willing to live with the side effects of medicine.

I don't know if I can handle the side effects of medicine.

More important
Equally important
More important

I want to do whatever I can to make my attacks happen less often.

I want to try to handle my attacks without medicine.

More important
Equally important
More important

My other important reasons:

My other important reasons:

More important
Equally important
More important

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

Leaning toward
Undecided
Leaning toward

What else do you need to make your decision?

Check the facts

1.

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.
2.

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.
3.

If you decide not to start medicines now, are there other things you can try?

  • YesYou're right. Instead of medicines, you can try physiotherapy, occupational therapy, and steroid shots to help manage your symptoms.
  • NoSorry, that's not right. Instead of medicines, you can try physiotherapy, 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?" Physiotherapy and steroid shots are two things you can try.

Decide what's next

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?

Certainty

1.

How sure do you feel right now about your decision?

Not sure at all
Somewhat sure
Very sure
3.

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.

Your decision 

Next steps

Which way you're leaning

How sure you are

Your comments

Your knowledge of the facts 

Key concepts that you understood

Key concepts that may need review

Getting ready to act 

Patient choices

Credits and References

Credits
CreditsHealthwise Staff
Primary Medical ReviewerAnne C. Poinier, MD - Internal Medicine
Primary Medical ReviewerAdam Husney, MD, MD - Family Medicine
Specialist Medical ReviewerColin Chalk, MD, CM, FRCPC - Neurology

References
Citations
  1. Multiple Sclerosis Society of Canada (1999). Consensus statement urges early treatment and wider access for MS drugs. Multiple Sclerosis Society of Canada. Available online: http://www.mssociety.ca/en/research/DMT991209.htm.
  2. Sadiq SA (2005). Multiple sclerosis. In LP Rowland, ed., Merritt's Neurology, 11th ed., pp. 941–963. Philadelphia: Lippincott Williams and Wilkins.
  3. 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.
  4. Goodin DS, et al. (2008). Assessment: The use of natalizumab (Tysabri) for the treatment of multiple sclerosis (an evidence-based review): Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology. Neurology, 71(10): 766–773.
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?

Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.
  1. Get the facts
  2. Compare your options
  3. What matters most to you?
  4. Where are you leaning now?
  5. What else do you need to make your decision?

1. Get the facts

Your options

  • Take medicines as soon as you are diagnosed with multiple sclerosis.
  • Don't take medicines now. Wait to see how the disease progresses.

Key points to remember

  • Your doctor may suggest medicines 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 physiotherapy, 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, infections, and allergic reactions. One type of medicine may damage your heart.
  • These medicines are costly. Your provincial health plan may cover most or all of the cost of your medicines. Ask your doctor or contact your provincial health plan for more information.
FAQs

What is multiple sclerosis?

Multiple sclerosis, often called MS, is a disease that affects the central nervous system—the brain and spinal cord. It can cause problems with muscle control and strength, vision, balance, feeling, and thinking.

Your nerve cells 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 in the brain and spinal cord, 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. Your doctor will examine you, ask you questions about your symptoms, and do some tests. An MRI 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 progressive. "Progressive" means it gets worse over time.
  • Primary progressive, which means the disease is progressive from the start.
  • Progressive relapsing, which means the symptoms come and go, but nerve damage gets worse over time.

What medicines are taken for MS?

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 the number of attacks and how bad they are.

To slow down the spread of MS, your doctor may suggest medicines 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.

Two types of medicines are commonly used to reduce how often relapses occur. These drugs can be costly. They don't work for everyone. And it's hard to know who will benefit.

Mitoxantrone is another medicine used to treat MS. While mitoxantrone is not officially approved in Canada for MS treatment, some doctors are using the medicine for relapsing-remitting MS that is rapidly getting worse or when other medicines for MS have not worked.

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.

How well do medicines work for MS?

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.

The Canadian MS Clinics Network and the Multiple Sclerosis Society of Canada (MSSC) stress the importance of early treatment for MS. The MSSC is working to ensure that people who could benefit from treatment have access to it.1

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).2
  • 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.3

Mitoxantrone is another medicine used to treat MS. While mitoxantrone is not officially approved in Canada for MS treatment, some doctors are using the medicine for relapsing-remitting MS that is rapidly getting worse or when other medicines for MS have not worked.

Another drug, natalizumab (Tysabri) can also decrease relapse rates. It can lower the chances that a person with MS will be permanently disabled.4 But it can cause serious side effects and is only used when other drugs don't work.

What if you don't take MS medicines?

If you decide not to take MS medicines, there are some other things you can do.

Why might your doctor recommend these medicines?

Your doctor may suggest that you take MS medicines because:

  • 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.

2. Compare your options

  Take MS medicines Don't take MS medicines
What is usually involved?
  • You give yourself a shot either daily, weekly, or several times a week (interferon beta or glatiramer).
  • If you take mitoxantrone, you receive the drug through a vein (IV) in your arm every 3 months for up to 3 years. You will need a test to check your heart before each injection.
  • You visit your doctor regularly for blood tests and to check your progress.
What are the benefits?

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.
  • You avoid the risks and cost of medicines that you might not need or that may not work for you.
What are the risks and side effects?
  • These drugs don't work for everyone. It is hard to predict who will benefit.
  • These medicines are costly.
  • The long-term risks 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.
  • Mitoxantrone carries a risk of serious heart damage in some people.
  • You may have a hard time dealing with attacks and 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

Are you interested in what others decided to do? Many people have faced this decision. These personal stories may help you decide.

For more information, see the topic Multiple Sclerosis.

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

3. 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.

More important
Equally important
More important

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.

More important
Equally important
More important

I don't mind giving myself shots.

I don't want to give myself shots.

More important
Equally important
More important

I'm willing to live with the side effects of medicine.

I don't know if I can handle the side effects of medicine.

More important
Equally important
More important

I want to do whatever I can to make my attacks happen less often.

I want to try to handle my attacks without medicine.

More important
Equally important
More important

My other important reasons:

My other important reasons:

More important
Equally important
More important

4. 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

Leaning toward
Undecided
Leaning toward

5. What else do you need to make your decision?

Check the facts

1. Do medicines work for everyone who has MS?

  • Yes
  • No
  • I'm not sure
You're right. Medicines can reduce the severity of attacks and may prevent or delay disability. But they don't work for everyone.

2. Can medicines help prevent some nervous system damage from MS?

  • Yes
  • No
  • I'm not sure
You're right. Early treatment may prevent or delay some nervous system damage.

3. If you decide not to start medicines now, are there other things you can try?

  • Yes
  • No
  • I'm not sure
You're right. Instead of medicines, you can try physiotherapy, occupational therapy, and steroid shots to help manage your symptoms.

Decide what's next

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?

Certainty

1. How sure do you feel right now about your decision?

Not sure at all
Somewhat sure
Very sure

2. Check what you need to do before you make this decision.

  • I'm ready to take action.
  • I want to discuss the options with others.
  • I want to learn more about my options.

3. Use the following space to list questions, concerns, and next steps.

Credits
ByHealthwise Staff
Primary Medical ReviewerAnne C. Poinier, MD - Internal Medicine
Primary Medical ReviewerAdam Husney, MD, MD - Family Medicine
Specialist Medical ReviewerColin Chalk, MD, CM, FRCPC - Neurology

References
Citations
  1. Multiple Sclerosis Society of Canada (1999). Consensus statement urges early treatment and wider access for MS drugs. Multiple Sclerosis Society of Canada. Available online: http://www.mssociety.ca/en/research/DMT991209.htm.
  2. Sadiq SA (2005). Multiple sclerosis. In LP Rowland, ed., Merritt's Neurology, 11th ed., pp. 941–963. Philadelphia: Lippincott Williams and Wilkins.
  3. 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.
  4. Goodin DS, et al. (2008). Assessment: The use of natalizumab (Tysabri) for the treatment of multiple sclerosis (an evidence-based review): Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology. Neurology, 71(10): 766–773.

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