Multiple sclerosis 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 things to be aware of before making the change. It’s good to know what to expect with a new treatment plan and talk about any concerns with your neurologist.
MS is an autoimmune disease of the central nervous system. In MS, the immune system mistakenly attacks nerve fibers and causes lesions in the central nervous system, which includes the brain and spinal cord. MS symptoms often include muscle weakness, fatigue, and problems with movement and vision.
Disease-modifying therapies (DMTs) — also called disease-modifying treatment or disease-modifying drugs — are medications that help delay disease progression and slow the development of disabilities. Some newer DMTs are referred to as highly effective (HE) DMTs because they’ve been proven especially effective for some people with MS.
Your doctor will choose treatment options based partly on which type of MS you’re diagnosed with, such as relapsing-remitting MS, secondary progressive MS, primary progressive MS, or clinically isolated syndrome.
People with MS commonly switch treatments over time to manage their condition. Some common reasons for switching treatments include:
Here are five things to be aware of if you are considering switching treatments.
When considering a new drug, it’s important to understand that DMTs typically take time to become fully effective. According to study of data on more than 9,000 people with MS, DMTs can take anywhere from three to 16 months to reach full effectiveness, a period known as therapeutic lag.
According to the study, medications took an average of three to seven months to become fully effective for people with MS who were treated to reduce their relapse rate. For those in treatment for disability progression, treatment needed seven to 16 months to work, and the lag was on the longer side for men. Additionally, some DMTs need to be cleared from your system before you 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 conduct 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:
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 how you need to take a new medication, you’ll need to know how it will fit into your life. Be sure you have a clear understanding of treatment schedules, dosage, timing during the day, and whether you need to time your medication around meals.
Setting reminders on your phone or keeping a treatment calendar are important steps for managing medication schedules and planning other activities accordingly. Your doctor or 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. What is mild and tolerable to one person may be severe in another. 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 is also a 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 — can increase your risk for a rare brain infection called progressive multifocal leukoencephalopathy (PML). Your doctor will carefully monitor your risk for PML while you’re taking one of these drugs.
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. While the high cost of a drug may be a reason to switch treatments, first be sure you have explored available financial resources to help with MS medication costs.
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.
Switching MS treatments can be a stressful and trying experience. Stay in touch with your health care team and 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 treatments.
“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!”
On MyMSTeam, the social network for people with multiple sclerosis and their loved ones, more than 188,000 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.