Relapsing multiple sclerosis (MS) is an unpredictable disease, and most people living with it switch treatments over the course of their condition. If you and your neurologist determine that it’s time to switch MS medications, there are steps you can take to help make informed treatment decisions and ease the transition to a new medication. Knowing what to expect with a new treatment plan can help you feel more confident and prepared. Be sure to discuss all of your concerns with your neurologist before making a change.
MS is an autoimmune disease of the central nervous system (CNS). In MS, the immune system mistakenly attacks nerve fibers and causes lesions in the CNS, which includes the brain, optic nerve, and spinal cord. MS symptoms often include muscle weakness, fatigue, and problems with movement and vision.
Disease-modifying therapies (DMTs) — also called disease-modifying treatments or disease-modifying drugs — are medications that target the inflammatory component of MS and help reduce the risk of relapses. This, in turn, may slow the development of disabilities by targeting disorders in the immune system. Some DMTs are referred to as highly effective — or high-efficacy — (HE) DMTs because they’ve proved especially effective for some people with MS.
Your doctor will recommend treatment options based partly on which type of active MS you’re diagnosed with, such as relapsing-remitting MS (RRMS), active secondary progressive MS (SPMS), active primary progressive MS (PPMS), or clinically isolated syndrome (CIS).
One study found that medications took an average of three to seven months to become fully effective in reducing relapse rates.
People with MS commonly switch treatments over time to manage their condition. Some common reasons for switching therapies for multiple sclerosis include:
Here are five steps you can take if you intend to switch medication or if you’re considering switching.
When considering a new drug, it’s important to understand that DMTs typically take time to become fully effective. According to a study of data on more than 9,000 people with MS, DMTs can take anywhere from three to 16 months to reach full effectiveness. This delay is known as therapeutic lag.
According to the study, medications took an average of three to seven months to become fully effective in reducing the rate of MS relapses. The effect of treatment on disability progression started to show within seven to 16 months, and the lag was on the longer side for men. Additionally, with the discontinuation of a treatment, some DMTs need to be cleared from a person’s system before they can start another. This washout period may delay when you can start a new medication.
When you start a new treatment, your health care team will let you know when to follow up. At your follow-up appointment, you’ll likely undergo magnetic resonance imaging (MRI) scans and lab tests to determine how effective your DMT is and monitor your safety over time. Talk to your neurologist about lag times for drugs so you know what to expect. It may require patience, but it’s essential to stick to your new treatment plan once you start it.
MS treatments are administered in three different ways:
Make sure you know about potential side effects and how they can best be managed.
Depending on which treatment options your neurologist recommends, you may have some choice in how you take your medication. With some drugs, you may need to schedule appointments for clinical IV infusions, which will require travel and time. With other drugs, you may have the choice between self-injection or in-clinic injection.
In addition to the way a new medication is taken, you’ll need to consider how your new treatment will fit into your life. Be sure you have a clear understanding of:
Setting reminders on your phone or keeping a treatment calendar is an important step for managing medication schedules and planning other activities accordingly. Your doctor or neurology department nurse may have more recommendations on how to make a new treatment plan easier to stick to.
Medication side effects can occur with DMTs — as with any drug, even those sold over the counter. Each MS medication has different potential side effects, and some are more common than others. Tolerability is also different for each person. One person may have a mild side effect that’s easy to tolerate or manage, while another may experience it more severely. It’s important to know what side effects you might expect and how they can best be managed.
Common side effects of injected DMTs include temporary soreness at the site of injection or short-lived flu-like symptoms. Because MS treatments work by suppressing overactive cells in the immune system, there’s often more risk for infection.
Tell your doctor right away if you experience unexpected side effects from an MS drug. Seek help immediately if you experience signs of infection or another serious complication, including:
Some drugs for MS — particularly HE DMTs — carry a higher risk for a condition called progressive multifocal leukoencephalopathy (PML), which is caused by a rare viral brain infection. Your doctor will carefully monitor your risk for PML while you’re taking one of these drugs. Other DMTs may raise your risk for developing certain types of cancer.
Be sure to discuss with your neurologist what your individual risks are for different side effects. They can help you weigh those possible risks against the potential benefits of each medication and advise you on which treatment option is most likely to help you reach your treatment goals.
DMTs can be expensive, depending on your health insurance plan. You may discover that a recommended drug carries considerable out-of-pocket costs. Although the high cost of a drug may be a reason for switching DMTs, first be sure you’ve explored available financial resources to help with MS medication costs.
You may be eligible for cost assistance through the drug manufacturer or a nonprofit organization.
Drug companies and nonprofit organizations may provide cost assistance for people who meet specific low-income requirements. You may also be eligible for financial assistance if you are having trouble managing other types of expenses aside from drug costs, due to your condition. A social worker may also help you find additional resources that you are eligible for.
Treatment switches can be a stressful and trying experience. Plan on staying in touch with your health care team to be sure you have the follow-up you need if you have any concerns about your medication or condition. Reach out to family and friends for emotional support, and let the people you are close to know what you are going through.
Social support networks like MyMSTeam can provide a supportive community of people who understand what you are experiencing. MyMSTeam members often discuss their anxieties with switching therapies.
“My neurologist is switching me from an injected drug to an oral medication,” one member wrote. “I’m nervous and want advice.”
Another member answered, “The first two weeks on the new drug were pretty rough for me. My third week has been SO much better! Most of the side effects went away, thankfully.”
When a member wrote about their fear of starting a new drug, another member replied, “Please stay calm in any way you can! When you get your infusion, let the medical staff know that you are anxious! Hugs on the way to you!”
Another member wrote about their worries about new treatment options. “Take a breath, and just go with the flow until the pressure is off a bit,” one member wrote back.
A second member offered this advice: “Note what you want to accomplish and don’t get overwhelmed. Breathe! Good luck!”
In the past two decades, the U.S. Food and Drug Administration (FDA) has approved more than 25 DMTs to treat MS. Newer treatments include:
More new drugs, including new classes of drugs, are being investigated in clinical trials for their potential to prevent new lesions and even repair demyelination — that is, the damage to the protective myelin sheath that surrounds the nerves. With more treatment options than ever and additional choices in the pipeline, there’s reason to be hopeful that the future holds a better quality of life for people with MS.
On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, more than 209,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Do you have more tips about what to know before switching MS treatments? Share your advice in the comments below, or start a conversation by posting on your Activities page.
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