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Speak with people who understand

When you have a rare genetic condition like Primary Periodic Paralysis (PPP), it can be difficult finding support and guidance. You are not alone. PPP Mentor Connect can put you in touch with a person taking KEVEYIS who may understand what you’re going through and who can share their medical journey and personal experience with you. Whether you are an adult with PPP or an adult caregiver of an adult with PPP, you can connect with an understanding mentor.
Call 1-866-769-8398 to schedule time to talk with a PPP mentor

John didn’t sit back, he took control of his PPP journey

No one in John’s family talked about their family history of sudden paralysis, which caused John to feel alone and stigmatized. He felt that way most of his life as he continued to deal with it on his own. John accepted it as part of his reality, but refused to accept feeling helpless about it. Instead, he took control of the situation and began reading journals to educate himself. Eventually, he was diagnosed with PPP and began looking for ways to move forward with his life. In time, his daughter was also diagnosed with PPP. It made John work even harder. His efforts to stay informed led him to a PPP conference where he learned about KEVEYIS. Since starting on KEVEYIS, the number of his episodes has decreased. Initially, John felt dizzy after starting KEVEYIS, but he worked with his doctor to find a way to manage it. John wants everyone living with PPP to know that they are not alone in their journey.

Advocating for herself: Janine’s efforts led to answers

Janine spent years being misdiagnosed. Meanwhile, her condition was getting worse and impacting her life. It affected her ability to perform her job, and her coworkers thought she was faking an illness. Eventually, her progressive condition forced her into an early retirement. After suffering unexplained muscle weakness for decades, Janine finally had a breakthrough when her doctor prescribed a potassium supplement as a last-ditch effort, which helped initially control her symptoms. This sudden improvement encouraged Janine to continue her research efforts. Unfortunately, this initial treatment became ineffective overtime. After conversations with her doctor, Janine was eventually prescribed KEVEYIS, which led to the frequency and severity of her paralytic episodes being reduced, and she was finally able to manage her daily life.

Persistence paid off for Paul

One day, during a seemingly routine shopping trip with his mom, Paul started to experience some very unusual and frightening symptoms. Immediately following the onset of a terrible migraine, Paul’s right leg began to drag. It wasn’t long before his right arm became extremely weak, followed by the entire right side of his body. He was rushed to the nearest hospital. On his way there, it registered just how serious this was when he overheard the paramedics call “code stroke.” Paul received an MRI scan, but regained his ability to move by the time the results came back. On that day, the ER doctor diagnosed Paul with hemiplegic migraines. Over the course of the year, Paul’s episodes of paralysis progressed to affect his entire body, which differed from the symptoms of hemiplegic migraines. It seemed like his healthcare team wasn’t making headway toward an accurate diagnosis. One neurologist even referred Paul to a psychologist because she didn’t believe that his symptoms were real. Fortunately, another one of his doctors recommended a genetic test to confirm the original diagnosis of hemiplegic migraines. That test also revealed that Paul had a genetic mutation that causes hypokalemic periodic paralysis (HypoPP). Even with a confirmed diagnosis, Paul and his mom struggled to find information about treatment and ways to manage his condition. So they searched for answers on their own. Eventually, they found out about a Periodic Paralysis Association (PPA) conference where they met others with PPP and learned about KEVEYIS. Still, some of Paul’s symptoms seemed different than what was discussed at the conference. It would take yet another discovery, related to a different condition, for Paul to get an answer.

Eventually one of Paul’s doctors determined that complications resulting from a condition that Paul knew about since his youth, called Ehlers-Danlos Syndrome, was causing some of his episodes of paralysis. Those episodes could be managed by relieving neck compression. So, that meant that the others caused by HypoPP required treatment. It all finally made sense. Paul remembered hearing about KEVEYIS at the PPA conference, so he brought it up to his doctor, who agreed that KEVEYIS seemed to be an appropriate treatment option for him. Now, with the help of his doctor, Paul is able to manage his PPP by taking KEVEYIS and avoiding triggers whenever possible. He also relies on his service dog Koira, who can warn him of PPP episodes 15-30 minutes before they happen.

To find out more about how KEVEYIS can help you, click here.

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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.