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Primary Periodic Paralysis Tools & Resources

Support to help you manage the condition

Finding out you have Primary Periodic Paralysis (PPP) may cause concerns and questions about what this diagnosis means for you, both today and into your future. That’s why we’ve developed a variety of tools and resources to help you learn more about your condition and get the most out of the treatment plan your doctor recommends.
Health Insurance Support
Your health insurance company may require a prior authorization to be approved by your doctor before they will cover the cost of your insurance. The doctor who ordered your KEVEYIS may need to submit the required paperwork and supporting documentation and request approval. Below are some tips for you to help minimize the risk of insurance denial.
  • It is always important to maintain an ongoing medication log that includes all medication treatments you have tried in the past and current medication treatments for your PPP.
  • Maintain a list of all physicians and hospitals that you have visited regarding your PPP, including any emergency room visits where lab tests may have been taken during a PPP episode.
  • Create a file folder to keep all of your documents, logs, test results, and medication lists. Keeping these in chronological order will help your doctor.
If your health insurance is not covering your prescription of KEVEYIS, here are some things you can do to help advocate for your coverage. Remember, you are your own best advocate.
Discussing PPP With Your Family
The family facilitator brochure will help you get ready to talk with your family about PPP, and why it’s important to be evaluated for PPP by a doctor so they can manage the condition. The family history worksheet will help you map out the pattern of PPP in your family.
Primary Periodic Paralysis Daily Tracker & 1-Month Diary
Recording the details of your attacks can help you and your doctor understand your disease. The downloadable Daily Tracker Tool gives you an easy-to-use form to note when the attack occurred, how long and how severe it was, if there were any triggers, and more. For a more complete look at how you live with your PPP, the 1-Month Diary is a helpful tool that lets you compile and summarize the details of your attacks, understand which treatments and lifestyle changes have worked, and how the attacks and PPP have impacted your life. Download Now
Doctor Discussion Guide
Prepare for your next visit to the doctor with this informative Doctor Discussion Guide that helps you consider the current and future treatment for your PPP. Download Now
Coping Strategies Brochures
There may be times that you find it hard to tell if what you’re feeling are possible side effects or symptoms of PPP. These brochures can help you better understand treatment-related side effects, as well as strategies for managing them. As always, your healthcare team is your best source of advice. These brochures can help you in starting those conversations.
Papers on PPP Written by Experts
Strongbridge Biopharma sponsored a group of experts in treating and researching PPP to identify and address unmet needs in patients’ diagnostic journeys. These experts then developed a series of white papers to help physicians and patients better understand these challenges with PPP. Primary Periodic Paralysis:
Uncovering Periodic Paralysis genetic testing brochure
Learn more about Uncovering Periodic Paralysis, a no-cost genetic testing program for patients and their family members who have symptoms of hyperkalemic or hypokalemic periodic paralysis. Download Now

PPP DocFinder Website

In support of the PPP community, Strongbridge Biopharma has created the PPP DocFinder. This website will help you find doctors who have experience diagnosing and managing PPP. Find A Doctor

Community support

Periodic Paralysis Association The Periodic Paralysis Association is a nonprofit charitable corporation founded to foster awareness of the periodic paralyses, promote science-based information regarding this class of disorder, and champion the interests of the periodic paralysis community. Learn more
Periodic Paralysis International A mission-driven, independent and not-for-profit whose goal is to help create successful partnerships between physicians, researchers, and periodic paralysis patients in order to speed diagnosis and improve therapy and management strategies, thereby improving quality of life and clinical outcomes for patients. Learn more
An Online PPP Community The Inspire online community connects patients and caregivers living with PPP. Members share stories of support on how they are living and thriving with PPP as well as valuable information. Learn more
Muscular Dystrophy Association (MDA) A nonprofit organization whose mission is to provide hope and answers to families living with diseases that take away muscle strength and mobility. Learn more
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Indication and Important Safety Information

What is KEVEYIS?

KEVEYIS (pronounced keh-VAY-iss) (dichlorphenamide) is a prescription drug used to treat primary hyperkalemic periodic paralysis, primary hypokalemic periodic paralysis, and other similar diseases.

What should you tell your healthcare provider before taking KEVEYIS?

Tell your doctor if you are allergic to dichlorphenamide or other sulfa drugs; if you take high doses of aspirin, or if you have lung or liver disease; if you are pregnant, plan to become pregnant, or are breastfeeding or plan to breastfeed.

What should you know about KEVEYIS?

  • Severe allergic and other reactions have happened with sulfonamides (drugs such as KEVEYIS) and have sometimes been fatal. Stop taking KEVEYIS at the first sign of skin rash, swelling, difficulty breathing, or any other unexpected side effect or reaction, and call 911 right away.
  • Tell your healthcare provider if you take aspirin or if another healthcare provider instructs you to begin taking aspirin. High doses of aspirin should not be taken with KEVEYIS.
  • KEVEYIS can cause your body to lose potassium, which can lead to heart problems. Your healthcare provider will measure the potassium levels in your blood before you start treatment and at certain times during treatment.
  • Tell your healthcare provider about all other prescription and over-the-counter medicines you take, including supplements, as some medicines can interact with KEVEYIS.
  • While taking KEVEYIS, your body may produce too much acid or may not be able to remove acid from the body. Your healthcare provider may run tests on a regular basis to check for signs of acid buildup.
  • KEVEYIS may increase your risk of falling. Tell your healthcare provider right away if you experience a fall while taking KEVEYIS.
  • The risks of falls and acid buildup are greater in elderly patients.
  • It is not known whether KEVEYIS is safe or effective for people younger than 18 years of age.

What are the most common side effects with KEVEYIS?

The most common side effects are a feeling of numbness, tingling or burning (“pins and needles”) in the toes, feet, hands or fingers; trouble with memory or thinking; feeling confused; and unpleasant taste in the mouth.

These are not all of the possible side effects of KEVEYIS. Call your healthcare provider for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see Full Prescribing Information.