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PPP Management

Primary Periodic Paralysis attacks can be reduced

Know your triggers

Certain factors, called triggers, can cause you to have an episode of PPP. Triggers vary from person to person, and from one subtype of PPP to another.

Learning to identify them is important for helping to manage your episodes.1

Common triggers of PPP episodes include1:

Foods or beverages high in salt, carbohydrates, or potassium

Stress or tiredness

Becoming cold

Periods of inactivity

Resting after exercise

Emotional impact of PPP

PPP can also take an emotional toll.

Some people, for example, may experience social anxiety, because they are afraid of having an episode in public.2 PPP can also impact work and relationships.2

Lingering symptoms

Symptoms may sometimes linger after an episode.

They can include2:

  • Weakness
  • Fatigue or persistent tiredness
  • Muscle pain
  • Clumsiness

Long-term effects of PPP

Many people with PPP have reported persistent muscle weakness, which is muscle weakness that is felt just about all the time, not only during episodes of PPP.3

  • For some people, persistent muscle weakness can occur over time as muscles break down2
  • Persistent muscle weakness is more likely to develop in a person’s 40s and 50s, and it most commonly occurs in leg and hip muscles2,3

Talk to your doctor if you are experiencing any of the symptoms of persistent muscle weakness.

Patient Ambassador

“I have had a few bouts of profound muscle weakness when exposed to very cold wind, but I have not had an attack of temporary paralysis affecting my full body in [two] years.”

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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.

References

  1. Statland JM, Fontaine B, Hanna MG, et al. Review of the diagnosis and treatment of periodic paralysis. Muscle Nerve. 2018;57:522-530.
  2. Charles G, Zheng C, Lehmann-Horn F, Jurkat-Rott K, Levitt J. Characterization of hyperkalemic periodic paralysis: a survey of genetically diagnosed individuals. J Neurol. 2013;260:2606-2613.
  3. Cavel-Greant D, Lehmann-Horn F, Jurkat-Rott K. The impact of permanent muscle weakness on quality of life in periodic paralysis: a survey of 66 patients. Acta Myol. 2012;31:126-133.