Making decisions about treatment options for multiple sclerosis can raise various emotions. Research shows that a diagnosis of MS can increase feelings of distress, worry, and emotional oversensitivity, particularly in the first two or three years following diagnosis. Treatment decisions can add to the emotional challenges of living with MS.
MyMSTeam members often discuss decision-making and some of the stress that comes with starting a new treatment. “Big decision on the way,” a member wrote. “I take an oral medication and I really like it, but thinking about going back to my original, injected medication. I don't think I can handle the side effects anymore. Decisions, decisions …”
Another member said, “It’s really disturbing when you’ve tried so many different treatments and all seem worse than the disease itself. On my fourth treatment now. It’s nearly impossible to be stress-free.”
Since multiple sclerosis is a chronic illness, people diagnosed with the condition may need to take medication throughout their lives. Experiencing treatment interruptions or having to switch medications make it more challenging to get the best treatment for MS.
Treatment options for MS continue to expand as new research in neurology seeks more effective therapies. Most people diagnosed with MS are prescribed disease-modifying therapies (DMTs) — also called disease-modifying treatments. These medications are designed to suppress aspects of the immune system and prevent attacks on central nervous system tissue. DMTs are taken by IV infusion at a clinic, injection (including self-injection), or orally, depending on the medication.
Though there are many treatment options available, treatment plans can vary considerably among people with MS, given the condition’s unpredictability. Some people with MS may take a number of different medications throughout the disease course.
It is not uncommon to switch MS medications over time and face new decisions about treatment. People with MS may switch treatment due to many factors:
“I recently had an MRI and was told my MS treatment wasn’t working to the best of its abilities,” wrote one MyMSTeam member. “My neurologist said I would have to switch treatment, which is positive and also negative all in one. I was given two choices to pick from.”
Starting a new treatment may cause emotional distress or worry. “I’m trying to be chill, but I’m extremely scared to start my treatment tomorrow,” a member said. Facing difficult decisions may also cause stress. A member wrote, “I was diagnosed last week. The doc wants to start aggressive treatment. Trying to figure out my options.”
As new drug options become available, some people with MS consider switching treatments. Sometimes, for example, a person may prefer an appropriate medication because of the way it’s taken. Nonetheless, deciding to switch medications — even for convenience — may not be easy.
“Decisions, decisions!” wrote a MyMSTeam member. “My neurologist recently mentioned possibly switching to an oral treatment. I’ve had MS now for nine years, and have done very well on the injected DMT.” They further pondered their options: “The thought of not having to inject every other day really intrigues me. I really thought I’d just jump on an oral medication as soon as one became available that I thought I could trust. Why the hesitation? I don’t know!”
Sometimes, people with MS think their medication may not be working. However, it can take time to know if the treatment is effective. Be sure to ask your doctor how long a medication will need to start working.
Learn more about how DMT effectiveness is measured.
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Many side effects from MS drugs are bothersome, but not dangerous. If side effects negatively impact your quality of life and well-being, and if they become hard to tolerate, you may need to consider whether or not to switch treatment.
Considering stopping treatment due to side effects can be stressful, given the potential for serious consequences. “This is such a frustrating dilemma for us,” wrote one MyMSTeam member facing side effects from their DMT. “Stay positive. I studied mindfulness when I was at the bottom of the barrel. I doubted that it worked, but it does.”
Some side effects may fade over time, and some may be managed with other medications. Speak to your doctor if you’re experiencing side effects that impact your quality of life.
Watch MS specialist Dr. Aaron Boster discuss why people with MS are at a higer risk for depression.
While some potential side effects may cause discomfort, others may be more dangerous. For instance, some DMTs increase the risk of developing a condition called progressive multifocal leukoencephalopathy (PML), a brain infection that can be fatal or severely disabling. PML is rare, and risk factors for PML can be assessed, both prior to starting treatment and during treatment. However, researchers have found that the risk of PML is a significant consideration for many people with MS who are deciding on treatment.
One MyMSTeam member described their concern about PML. “I found out I will be receiving 100 percent coverage for a DMT. However, I was sent some literature regarding the drug and read something disturbing. By taking the drug, you are at risk of developing PML. I then sent a message to my MS neurologist about this matter. Don’t know what to think.”
Another member decided the benefits of a drug were greater than the risks. “You have to ask yourself: Are the chances of getting PML small enough that it outweighs the chances I may have another relapse which could cause permanent damage? To me, the answer is a resounding ‘Yes!’”
For some people, doing research and talking with their health care providers are important steps in making a decision about treatment. “My husband and I are making a decision about his DMT,” wrote a MyMSTeam member. “His next appointment is with the MS nurse to go through the pros and cons of it. He has done his research into it and knows that it carries risks.”
“I’m talking to my doctor tomorrow,” said another member. “He says if people constantly monitor their white blood count they should be okay. Still, I’m more hesitant now to stay on my current DMT.”
Deciding on treatment for MS can undoubtedly be stressful and emotional. There is evidence that people with MS may have more difficulty with decision-making than the general population, due to MS’s impact on cognitive function. You may need more support from your health care providers in making critical decisions about your treatment.
As one MyMSTeam member put it, “Making decisions is tough, but especially when your body is fighting against you!”
If you’re making decisions about treatment options, you can benefit from open communication with your neurologist and health care team. Shared decision-making is a collaborative process with clinicians and those who have MS.
According to a systematic review, shared decision-making is associated with several benefits:
It is important to let your health care team know if you are struggling with a decision about a treatment. Open and active communication with your doctors can help ease the decision-making process. Ask your doctor for information about treatments you’re considering, which you can read and later discuss at a follow-up appointment.
“My neurologist and I are exploring different factors around treatment options. It’s a process,” a MyMSTeam member said.
If you are struggling with the emotional impact of stress around treatment decisions, you can also ask your doctor for a referral for mental health counseling. Research shows that stress is associated with an exacerbation of MS, so getting healthy coping strategies in place to manage stress may benefit your overall health.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. More than 183,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Have you struggled with stress around decisions about MS treatment? Share your experiences or questions in the comments below, or start a conversation by posting on your Activities page.