Three Top Tips for Communicating with Your Doctor About Meeting Your MS Treatment Goals

Mary Ann Picone avatar

by Mary Ann Picone |

Share this article:

Share article via email
Dr. Picone photo

As someone who has worked in the multiple sclerosis (MS) field for many years, I have seen time and time again how daunting it can be for people to finally receive a diagnosis, and immediately have to shift gears to navigating day-to-day life with a chronic illness. This can feel especially overwhelming—even scary—for newly diagnosed MS patients, as MS can be unpredictable with a range of symptoms that affect each person differently.1

Your MS experience is unique to you and will continue to evolve over time. This is why it is vitally important to create open, honest dialogue with your doctor about your life, goals and treatment plan. These kinds of candid, two-way conversations allow for shared decision-making between you and your doctor, which typically leads to the most successful treatment plans that can evolve with your life. However, developing this kind of relationship with your doctor can be easier said than done. Here are three tips for creating a strong, ongoing dialogue with your doctor to ensure your treatment plan meets your needs.

1. Be open and honest

I always tell my patients that they are their own best advocate. Tell your doctor what you are hoping your treatment will accomplish, including how your body is reacting to any of your current or past medications. Share any new symptoms you are experiencing, including when they began, the frequency, and any patterns you notice related to how and when they appear. It’s also important for your doctor to have insight into any dietary changes you’ve made or new exercise routines you’ve adopted.

Speaking up is the only way your doctor will be able to effectively help you meet your goals. I recently met with a patient and opened the conversation by asking her what her goals for treatment were. This sparked an important conversation in which she shared that she is a musician and the numbness in her fingertips is one of the symptoms that interferes most with her job—and passion—as it directly impacts her ability to play her instruments. Being able to address this symptom was a paramount consideration when working with her to identify the right treatment option. Her honesty and openness allowed us to find the best treatment fit for her. The best healthcare teams will listen to you – this is your life and your treatment; you deserve to be in the driver’s seat.

2. Be informed and ask questions

Be proactive in learning about your disease and available treatment options through trusted resources. Feel empowered to ask your doctor questions to help calm concerns or learn about new treatment options and consult respected sources such as the National MS Society website and the Multiple Sclerosis Foundation website.

Just because one treatment may have worked for you in the past doesn’t mean there isn’t another one that might potentially be a better fit, particularly given the rapid pace at which the MS treatment landscape is evolving. In the past five years alone, seven new MS treatments were approved in the U.S., including the most recent FDA-approved option, PONVORY®, a once-daily oral treatment for adults with relapsing MS.2,3 So, don’t be shy about asking your doctor to update you on new developments, and be sure to discuss the benefits and risk factors that come with each treatment option. I always tell my patients that if one treatment isn’t a fit for you, there are many other options we can consider.

3. Prioritize your overall lifestyle and wellness goals

Medication is just one piece of the puzzle. How you take care of yourself beyond traditional treatment is just as important to helping live a full life with MS. Some of the best things you can do for your overall wellness are moving your body, eating a well-balanced diet, and focusing on your mental health. In addition to helping my patients manage their MS through treatment, I am also here to support them with these other priorities – whether it’s helping a yogi figure out a way to continue their practice or encouraging a home chef to cook healthy meals.

Similarly, lifestyle goals and other factors are important to consider in every aspect of your MS experience. For example, you may want to start a family. Discussing these types of plans with your doctor would help you find a treatment that offers you the flexibility you need for family planning, such as PONVORY®. If you’re looking to start a family, PONVORY® leaves your body about seven days after stopping treatment.3* Use effective contraception during and for up to one week after stopping PONVORY®.3  If you’re already a busy parent with young kids, you may prefer a daily pill rather than finding the time to schedule an infusion at a doctor’s office. In this case, you may find a once-daily pill like PONVORY® helps give you that flexibility. This medicine, in particular, has no known food restrictions, needs no refrigeration, special storage or trips to infusion centers.3  

No matter your lifestyle and wellness goals, remember that they are an important aspect of developing a holistic plan to manage your MS, beyond just choosing a traditional medication. While life with MS can feel uncertain, forging an ongoing dialogue with your doctor, staying informed and prioritizing your health and wellness goals help ensure that you are receiving the best care and tending to your overall well-being.

 

IMPORTANT SAFETY INFORMATION

WHAT IS THE MOST IMPORTANT INFORMATION I SHOULD KNOW ABOUT PONVORY®?

PONVORY® may cause serious side effects, including:

  • Infections – PONVORY® can increase your risk of serious infections that can be life-threatening and cause death. PONVORY® lowers the number of white blood cells (lymphocytes) in your blood. This will usually go back to normal within 1 to 2 weeks of stopping treatment. Your healthcare provider should review a recent blood test of your white blood cells before you start taking PONVORY®. Call your healthcare provider right away if you have any of these symptoms of an infection during treatment and for 1 to 2 weeks after your last dose of PONVORY®:
    • fever
    • tiredness
    • body aches
    • chills
    • nausea
    • vomiting
    • headache with fever, neck stiffness, sensitivity to light, nausea, or confusion (these may be symptoms of meningitis, an infection of the lining around your brain and spine)

Your healthcare provider may delay starting or may stop your PONVORY® treatment if you have an infection.

  • Slow heart rate (bradycardia or bradyarrhythmia) when you start taking PONVORY®. PONVORY® can cause your heart rate to slow down, especially after you take your first dose. You should have a test to check the electrical activity of your heart called an electrocardiogram (ECG) before you take your first dose.

Only Start your treatment with PONVORY® using the Starter Pack. You must use the PONVORY® Starter Pack by slowly increasing the dose over a 14-day period to help reduce the effect of slowing of your heart rate. It is important to follow the recommended dosing instructions.

Call your healthcare provider if you experience the following symptoms of slow heart rate:

  • dizziness
  • shortness of breath
  • lightheadedness
  • confusion
  • feeling like your heart is beating slowly or skipping beats
  • chest pain
  • tiredness

Do not take PONVORY® if you:

  • have had a heart attack, chest pain called unstable angina, stroke or mini-stroke (transient ischemic attack or TIA), or certain types of heart failure in the last 6 months.
  • have certain types of heart block or irregular or abnormal heartbeat (arrhythmia) unless you have a pacemaker.

Talk to your healthcare provider if you have any of these conditions, or do not know if you have any of these conditions.

Before you take PONVORY®, tell your healthcare provider about all your medical conditions, including if you:

  • have a fever or infection, or you are unable to fight infections due to a disease or taking medicines that lower your immune system.
  • have had chicken pox or have received the vaccine for chicken pox. Your healthcare provider may do a blood test for chicken pox virus. You may need to get the full course of vaccine for chicken pox and then wait 1 month before you start taking PONVORY®.
  • have slow heart rate.
  • have an irregular or abnormal heartbeat (arrhythmia).
  • have a history of stroke.
  • have heart problems, including a heart attack or chest pain.
  • have high blood pressure.
  • have breathing problems, including during your sleep.
  • have liver problems.
  • have or now have a type of skin cancer called basal cell carcinoma (BCC), melanoma, or squamous cell carcinoma.
  • have eye problems, especially an inflammation of the eye called uveitis.
  • have diabetes.
  • are pregnant or plan to become pregnant. PONVORY® may harm your unborn baby. Talk with your healthcare provider if you are pregnant or plan to become pregnant. If you are a woman who can become pregnant, you should use effective birth control during your treatment with PONVORY® and for 1 week after you stop taking PONVORY®. Talk to your healthcare provider about what method of birth control is right for you during this time. Tell your healthcare provider right away if you do become pregnant while taking PONVORY® or within 1 week after you stop taking PONVORY®.
  • are breastfeeding or plan to breastfeed. It is not known if PONVORY® passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby if you take PONVORY®.

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

Using PONVORY® and other medicines together may affect each other causing serious side effects.

Especially tell your healthcare provider if you take or have taken: Medicines to control your heart rhythm (antiarrhythmics), or blood pressure (antihypertensives), or heart-beat (such as calcium channel blockers or beta-blockers); medicines that affect your immune system, such as alemtuzumab; and medicines such as rifampin, phenytoin, or carbamazepine.

You should not receive live vaccines during treatment with PONVORY®, for at least 1 week before taking and for 1 month after you stop taking PONVORY®. If you receive a live vaccine, you may get the infection the vaccine was meant to prevent. Vaccines may not work as well when given during treatment with PONVORY®.

Talk with your healthcare provider if you are not sure if you take any of these medicines.

HOW SHOULD I TAKE PONVORY®?

  • Take PONVORY® exactly as your healthcare provider tells you to take it.
  • Take PONVORY® 1 time each day.
  • Swallow PONVORY® tablets whole.
  • Take PONVORY® with or without food.
  • Do not stop taking PONVORY® without talking with your healthcare provider first.
  • Do not skip a dose.
  • Start taking PONVORY® with a 14-day starter pack.
  • If you miss taking 1, 2, or 3 tablets in a row of PONVORY® in the 14-day starter pack, continue treatment by taking the first dose you missed. Take 1 tablet as soon as you remember. Then, take 1 tablet a day to continue with the starter pack dose as planned.
  • If you miss taking 1, 2, or 3 tablets in a row of PONVORY® while taking the 20 mg maintenance dose, continue treatment with the 20 mg maintenance dose.
  • If you miss taking 4 or more tablets in a row of PONVORY®, while taking the 14-day starter pack or the 20 mg maintenance dose, you need to restart treatment with a new 14-day starter pack. Call your healthcare provider if you miss 4 or more doses of PONVORY®. Do not restart PONVORY® after stopping it for 4 or more days in a row without talking to your healthcare provider. If you have certain heart conditions, you may need to be monitored by your healthcare provider for at least 4 hours when you take your next dose.

What are the possible side effects of PONVORY®?

PONVORY® may cause serious side effects, including:

  • breathing problems. Some people who take PONVORY® have shortness of breath. Call your healthcare provider right away if you have new or worsening breathing problems.
  • liver problems. PONVORY® may cause liver problems. Your healthcare provider should do blood tests to check your liver before you start taking PONVORY®. Call your healthcare provider right away if you have any of the following symptoms of liver problems:
    • unexplained nausea
    • vomiting
    • stomach (abdominal) pain
    • tiredness
    • loss of appetite
    • yellowing of the whites of your eyes or skin
    • dark urine
  • increased blood pressure. Your healthcare provider should check your blood pressure during treatment.
  • types of skin cancer called basal cell carcinoma (BCC), melanoma, and squamous cell carcinoma. Certain types of skin cancer have happened with drugs in the same class. Tell your healthcare provider if you have any changes in the appearance of your skin, including changes in a mole, a new darkened area on your skin, a sore that does not heal, or growths on your skin, such as a bump that may be shiny, pearly white, skin-colored, or pink. Your doctor should check your skin for any changes during treatment with PONVORY®. Limit the amount of time you spend in sunlight and ultraviolet (UV) light. Wear protective clothing and use a sunscreen with a high sun protection factor.
  • a problem with your vision called macular edema. Tell your healthcare provider about any changes in your vision. Your healthcare provider should test your vision before you start taking PONVORY® and any time you notice vision changes during treatment with PONVORY®. Your risk of macular edema is higher if you have diabetes or have had an inflammation of your eye called uveitis.

Call your healthcare provider right away if you have any of the following symptoms:

  • blurriness or shadows in the center of your vision
  • a blind spot in the center of your vision
  • sensitivity to light
  • unusually colored (tinted) vision
  • swelling and narrowing of the blood vessels in your brain. A condition called Posterior Reversible Encephalopathy Syndrome (PRES) has happened with drugs in the same class. Symptoms of PRES usually get better when you stop taking PONVORY®. However, if left untreated, it may lead to a stroke. Call your healthcare provider right away if you have any of the following symptoms:
    • sudden severe headache
    • sudden confusion
    • sudden loss of vision or other changes in vision
    • seizure
  • severe worsening of multiple sclerosis (MS) after stopping PONVORY®.

When PONVORY® is stopped, symptoms of MS may return and become worse compared to before or during treatment. Always talk to your healthcare provider before you stop taking PONVORY® for any reason. Tell your healthcare provider if you have worsening symptoms of MS after stopping PONVORY®. 

The most common side effects of PONVORY® include:

  • upper respiratory tract infections
  • elevated liver enzymes (abnormal liver tests)
  • high blood pressure (hypertension)

These are not all the possible side effects of PONVORY®. For more information, ask your healthcare provider or pharmacist.  See “What is the most important information I should know about PONVORY®?”

Tell your doctor if you have any side effect that bothers you or that does not go away.

Call your doctor for medical advice about side effects. You are also encouraged to report side effects to the FDA: visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. You may also report side effects to Janssen Pharmaceuticals, Inc., at 1-800-JANSSEN (1-800-526-7736).

Please see full Prescribing Information and Medication Guide.

Trademarks are those of their respective owners.

cp-214883v2

 

To learn more about if PONVORY® is right for you, visit PONVORY.com and speak with your healthcare team.

 

This article is sponsored by Janssen Pharmaceuticals, Inc.

 

*PONVORY® may be harmful to unborn babies. Patients should talk to a healthcare provider if they are pregnant or plan to become pregnant.

†When PONVORY® is stopped, symptoms of multiple sclerosis may return and become worse compared with before or during treatment. Always talk to your healthcare professional before you stop taking PONVORY® for any reason. Tell your healthcare professional if you have worsening symptoms of multiple sclerosis after stopping PONVORY®.

 

References

1 National Multiple Sclerosis Society. MS Signs & Symptoms. National Multiple Sclerosis Society website. Accessed February 28, 2022. https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms

2 National Multiple Sclerosis Society. Disease-Modifying Therapies for MS. National Multiple Sclerosis Society website. Accessed February 28, 2022. https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-The-MS-Disease-Modifying-Medications.pdf

3 PONVORY® [Prescribing Information]. Titusville, NJ: Janssen Pharmaceuticals, Inc. April 2021.

Dancing Doodle

Did you know some of the news and columns on Multiple Sclerosis News Today are recorded and available for listening on SoundCloud? These audio news stories give our readers an alternative option for accessing information important for them.

Listen Here