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How to Advocate For Yourself at the Doctor When You Have MS

How to Be Your Own Advocate at the Doctor's Office When Diagnosed With Relapsing Multiple Sclerosis

We've partnered with Biogen to give you the information you need to make the most of your doctor's appointments, including by talking about treatments for your specific condition. For U.S. audiences only. Dr. Sibyl Wray is a paid spokesperson for Biogen.

Receiving a diagnosis of a chronic condition can be utterly overwhelming. Not only are you coming to grips with your new health reality, but you also have to make sense of a barrage of new medical information, adjust to new medications and treatments, and keep track of a number of appointments.

Relapsing multiple sclerosis (MS) is one such chronic condition. It affects more women than men — about two to three times more — and is typically diagnosed between the ages of 20 and 50.1 Relapsing MS is an autoimmune disease that attacks a part of the body called the central nervous system (CNS). The CNS controls functions such as the ability to walk and think. For people living with relapsing MS, damage to the CNS can cause a variety of symptoms that you feel and experience. However, there can also be symptoms that may not be noticeable or visible that can be detected through magnetic resonance imaging (MRI) scans. Individuals and their healthcare providers (HCP) have a lot to discuss because the severity and specific symptoms of relapsing MS vary from person to person.


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Because there is so much to discuss, Dr. Sibyl Wray, a neurologist at Hope Neurology in Knoxville, TN, does her best to deliver a diagnosis to her relapsing MS patients in person. Speaking with them face to face not only allows Dr. Wray to share a range of information with her patients, but also reassure them that it's going to be OK and that the diagnosis doesn't have to change who they are. She encourages patients to bring someone they trust to their appointment for emotional support and to catch any information that may be missed. "When you've just been diagnosed with a chronic condition, you're probably not absorbing as much information as you would on a normal basis," she said. "I'm always happy when a family member, a significant other, or a friend is with them so that they have two sets of ears on the conversation and will remember more."


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A diagnosis can be life-changing for many and may prompt all kinds of questions after that in-person discussion with your healthcare provider. Once you've wrapped your head around your new diagnosis, Dr. Wray recommended doing some research about the disease. "Keep well-informed," she said. "Take advantage of any learning experiences that there might be." For her relapsing MS patients, Dr. Wray suggests looking into MS advocacy groups as trustworthy disease education sources.

Dr. Wray also said it's incredibly important for individuals to have open conversations with their healthcare provider, especially about their treatment plan. For example, she works with her relapsing MS patients to understand what potential benefits they’re hoping to get from treatment, as well as potential risks. She said discussing the effectiveness, safety profile, side effects, and any relevant clinical trials is crucial for every medication.


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Of the FDA-approved treatments for relapsing MS, one of the medications Dr. Wray considers for her patients is VUMERITY® (diroximel fumarate). VUMERITY is a pill that was approved by the U.S. Food and Drug Administration in 2019 for the treatment of relapsing forms of MS in adults.2 It is not known if VUMERITY is safe and effective in children. VUMERITY may work against relapsing MS in three ways: reducing relapses, delaying the progression of disability, and slowing development of brain lesions, which are goals of relapsing MS treatment.

Before taking and while you take VUMERITY, it's important to talk to your doctor about all of your medical conditions, including if you have liver or kidney problems, have or have had low white blood cell counts or an infection, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. It's also crucial to discuss all the medicines you take and any reactions to previous medicines. You should not take VUMERITY if you’ve had an allergic reaction to diroximel fumarate, dimethyl fumarate or any of the ingredients in VUMERITY.

As always, before taking any medicine, it's important to talk with your healthcare provider about the potential side effects associated with treatment. The possible risks and serious side effects of VUMERITY include allergic reaction; PML, a rare brain infection that usually leads to death or severe disability; herpes zoster infection (or shingles); including central nervous system infections and other serious infection; decreases in white blood cell count; and liver problems. The most common side effects are flushing and stomach problems.

If you have relapsing MS, or believe you may have relapsing MS, talk with your healthcare provider about whether VUMERITY is right for you. Visit VUMERITY.com for more information.

Open conversation doesn’t end once you’ve determined a treatment plan: Every appointment with your healthcare provider is an opportunity to address any questions, concerns, or topics you want to cover. Dr. Wray recommends organizing your thoughts into a list before your appointments. Write down every subject you want to talk about in order of importance, then go down the list with your healthcare provider. It can be a handwritten note or list on your phone — whatever works best for you. People who have been prescribed VUMERITY also have access to the myVUMERITY™ app, a tool designed to help you keep track of your treatment routine, including setting dose reminders and emailing your dosing log to your healthcare team.

Last but not least, Dr. Wray said she tells her patients to try not to be overly stressed about receiving a new diagnosis on top of the pressures from work, family, and other responsibilities. Instead, remember to stay in close contact with your healthcare provider and others on your healthcare team to help facilitate open and honest discussions about what you’re going through.


What is VUMERITY® (diroximel fumarate)?
  • VUMERITY is a prescription medicine used to treat people with relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease in adults
  • It is not known if VUMERITY is safe and effective in children

Important Safety Information
Do not take VUMERITY if you:

  • have had an allergic reaction (such as welts, hives, swelling of the face, lips, mouth or tongue, or difficulty breathing) to diroximel fumarate, dimethyl fumarate or any of the ingredients in VUMERITY
  • are taking dimethyl fumarate
Before taking and while you take VUMERITY, tell your healthcare provider about all of your medical conditions, including if you:
  • have liver problems
  • have kidney problems
  • have or have had low white blood cell counts or an infection
  • are pregnant or plan to become pregnant. It is not known if VUMERITY will harm your unborn baby
  • are breastfeeding or plan to breastfeed. It is not known if VUMERITY passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby while using VUMERITY

Tell your healthcare provider about all the medicines you take including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What should I avoid while taking VUMERITY?
  • Do not drink alcohol at the time you take a VUMERITY dose
What are the possible side effects of VUMERITY?
VUMERITY may cause serious side effects including:
  • allergic reaction (such as welts, hives, swelling of the face, lips, mouth or tongue, or difficulty breathing). Stop taking VUMERITY and get emergency medical help right away if you get any of these symptoms
  • PML (progressive multifocal leukoencephalopathy) a rare brain infection that usually leads to death or severe disability over a period of weeks or months. Tell your healthcare provider right away if you get any of these symptoms of PML:
    • weakness on one side of the body that gets worse
    • clumsiness in your arms or legs
    • vision problems
    • changes in thinking and memory
    • confusion
    • personality changes
  • herpes zoster infections (shingles), including central nervous system infections
  • other serious infections
  • decreases in your white blood cell count Your healthcare provider should do a blood test to check your white blood cell count before you start treatment with VUMERITY and while you are on therapy. You should have blood tests after 6 months of treatment and every 6 to 12 months after that
  • liver problems. Your healthcare provider should do blood tests to check your liver function before you start taking VUMERITY and during treatment if needed. Tell your healthcare provider right away if you get any of these symptoms of a liver problem during treatment
    • severe tiredness
    • loss of appetite
    • pain on the right side of your stomach
    • have dark or brown (tea color) urine
    • yellowing of your skin or the white part of your eyes
The most common side effects of VUMERITY include:
  • flushing, redness, itching, or rash
  • nausea, vomiting, diarrhea, stomach pain, or indigestion
  • Flushing and stomach problems are the most common reactions, especially at the start of therapy, and may decrease over time. Taking VUMERITY with food (avoid high-fat, high-calorie meal or snack) may help reduce flushing. Call your healthcare provider if you have any of these symptoms and they bother you or do not go away. Ask your healthcare provider if taking aspirin before taking VUMERITY may reduce flushing.
These are not all the possible side effects of VUMERITY. Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. For more information go to dailymed.nlm.nih.gov.

References:

  1. National Multiple Sclerosis Society. Relapsing-remitting MS (RRMS)
  2. VUMERITY U.S. Prescribing Information. Available at www.vumerity.com/content/dam/commercial/vumerity/pat/en_us/pdf/vumerity-prescribing-information.pdf

Design: Marissa Dickson

VUM-US-0668 4/2021.