Primary Periodic Paralysis Tools & Resources

Support to help you manage the condition

Finding out you have Primary Periodic Paralysis 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.

Uncovering Periodic Paralysis genetic testing brochure

Uncovering Periodic Paralysis is a no-cost genetic testing program for those who have episodic muscle weakness or temporary paralysis provoked by common triggers for hyperkalemic or hypokalemic periodic paralysis.

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Primary Periodic Paralysis Daily Tracker & 3-Month Diary

The Daily Tracker Tool is a downloadable PDF that gives you an easy-to-use form to keep a record of your attacks, including:

  • When they occurred
  • What triggers were involved
  • How severe they were
  • How they affected you

Keeping track of this information will help you better understand your attacks so you can have more informed conversations with your doctor.

The 3-Month Diary is designed to help you in becoming your own advocate. This downloadable form lets you summarize key information from your attacks over a 3-month period, including:

  • A summary of your attacks
  • How lifestyle modifications and medications worked
  • How the attacks impacted your life

Collecting this information on a single, at-a-glance form will help guide you and your doctor in discussions about your condition and individual management needs.

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Doctor Discussion Guide

The Doctor Discussion Guide is a PDF for you to use in planning ahead for your doctor visits. It is designed to help you:

  • Organize your thoughts and health information
  • Put together a list of questions for your doctor

Using this guide as a checklist will help you get ready for your visit so you get all the answers you need before you leave the office and feel confident about your treatment plan.

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Community support

An Online PPP Community
The Inspire community is an online support group designed to connect patients and caregivers living with PPP. Members can connect with each other and provide support, as well as share valuable support and information.
Learn more

Advocacy partners

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

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

To get started on KEVEYIS, please call 844‑KEVEYIS (844‑538‑3947).


Indication and Important Safety Information

What is KEVEYIS?

KEVEYIS (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 sulfur 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 or call 1-800-FDA-1088.