WHAT IS LEMS?

Important facts about Lambert-Eaton myasthenic syndrome (LEMS)

LEMS IS a neuromuscular disorder (a condition that affects the nerves and muscles) that typically causes severe, debilitating, and progressive muscle weakness and fatigue.

LEMS OCCURS WHEN the immune system disrupts communication between the nerves and muscles in an area known as the neuromuscular junction (NMJ).

LEMS DISRUPTS the ability of nerves to release an important chemical called acetylcholine (ACh). When ACh is not released properly, muscles lose the signal necessary for their full function. As a result, people with LEMS may struggle to walk or do everyday activities.

Illustration of the signal breakdown between nerves and muscles

WHO IS AFFECTED BY LEMS? 

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Approximately 3,000 people in the US

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First symptoms usually appear between ages 35 and 60

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Both men and women are affected

SYMPTOMS OF LEMS include muscle weakness, especially in the legs and hips. This weakness may fluctuate from day to day. LEMS can make it very difficult to do everyday activities, such as walking, talking, or lifting objects. Some patients may have to use assistive equipment, such as a wheelchair or walker, to get around. If you suspect that you may have LEMS, talk to your doctor about the symptoms you’re experiencing and your possible treatment options.

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Symptom Self-Assessment

Could your symptoms be a sign of LEMS?

TAKE A SHORT SELF-ASSESSMENT AND TALK TO YOUR DOCTOR TO SEE WHAT YOUR SYMPTOMS MAY BE TRYING TO TELL YOU

We’ll send you a summary of your responses, along with other helpful information that you can use when talking with your physician.

Take the Assessment
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Watch your inbox for your symptom assessment summary.

LEMS IS COMMONLY MISDIAGNOSED because its symptoms resemble other more common diseases, including:

  • Myasthenia gravis (MG)
  • Multiple sclerosis (MS)
  • Muscular Abnormalities
  • Fibromyalgia
  • Amyotrophic lateral sclerosis (ALS)
  • Depression

Many people with LEMS struggle with symptoms for years before finally getting diagnosed. For that reason, it’s important to see a physician who has experience with diagnosing neuromuscular diseases.

Who treats LEMS?

If you think that you may be experiencing symptoms of LEMS, talk to your physician. If your physician suspects that you may have LEMS, he or she may refer you to a neurologist or neuromuscular specialist. These types of doctors specialize in neuromuscular diseases like LEMS. Find a LEMS physician nearest to you now.

Mary Ann Talking
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MARY ANN, A PATIENT WITH LEMS, TALKS ABOUT HER JOURNEY TO DIAGNOSIS.

Diagnostic tests your doctor may use

LEMS is typically diagnosed using one or more of the following ways:

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A physical exam to test for symptoms and reflexes

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Bloodwork to test for voltage-gated calcium channel (VGCC) antibodies the antibodies responsible for causing LEMS

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An electrodiagnostic test to measure how well your muscles and nerves are communicating with each other

Benefits of earlier diagnosis

An early, accurate diagnosis may help you in several ways:

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Feeling better sooner – The earlier you know what’s causing your symptoms, the sooner they can be treated.

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Maintaining strength – Studies show that effective treatment can help you maintain your strength to support muscle function and mobility.

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Uncovering hidden disease – If you are diagnosed with LEMS, you may be at increased risk for certain types of cancer.

MORE ABOUT LEMS AND CANCER 

For some patients, their LEMS symptoms are an important early warning sign that may help save their lives.

Graphic illustrating the ratio of 5 of 10 patients

About 50% of people with LEMS have an underlying cancer—often small cell lung cancer

The majority of these cases occur in patients with a history of smoking

Your treating physician may recommend cancer screenings when you are diagnosed with LEMS and periodically thereafter.

FIRDAPSE Education Brochure

Educational Brochure

Download an educational brochure about LEMS and how FIRDAPSE may help.
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LEMS PATIENT AMBASSADORS

Gain insights from current patients about managing life with LEMS.
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What is FIRDAPSE®?

FIRDAPSE is a prescription medicine used to treat Lambert-Eaton myasthenic syndrome (LEMS) in people 6 years of age or older. It is not known if FIRDAPSE is safe or effective in children less than 6 years of age.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about FIRDAPSE?

  • FIRDAPSE can cause seizures.
    • You could have a seizure even if you never had a seizure before.
    • Do not take FIRDAPSE if you have ever had a seizure.
    • Stop taking FIRDAPSE and call your doctor right away if you have a seizure while taking FIRDAPSE.

Do not take FIRDAPSE if you:

  • have ever had a seizure.
  • are allergic to amifampridine phosphate, or another aminopyridine.

Before you take FIRDAPSE, tell your doctor about all of your medical conditions, including if you:

  • are taking another aminopyridine, such as compounded 3,4-diaminopyridine (3,4-DAP)
  • have had a seizure
  • have kidney problems
  • have liver problems
  • are pregnant or plan to become pregnant. It is not known if FIRDAPSE will harm your unborn baby. You and your doctor will decide if you should take FIRDAPSE while you are pregnant.
  • There is a registry for women who become pregnant during treatment with FIRDAPSE. The purpose of this registry is to collect information about your health and your baby’s health. Contact the registry as soon as you learn that you are pregnant, or ask your healthcare provider to contact for you by calling 855-212-5856 (toll free), contacting the Fax number 877-867-1874 (toll free), emailing the Pregnancy Coordinating Center at firdapsepregnancyregistry@ubc.com, or visiting the study website www.firdapsepregnancystudy.com.
  • are breastfeeding or plan to breastfeed. It is not known if FIRDAPSE passes into your breast milk. Talk to your doctor about the best way to feed your baby while taking FIRDAPSE.

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

How should I take FIRDAPSE?

  • If your dose is less than 5 mg, you have trouble swallowing tablets, or a feeding tube is needed, see the detailed Instructions for Use on how to take and prepare a suspension of FIRDAPSE.
  • Take FIRDAPSE exactly as your doctor tells you to take it.
  • Do not change your dose of FIRDAPSE.
  • Do not stop taking FIRDAPSE without first talking to your doctor.
  • FIRDAPSE tablets are scored and can be split if less than a full tablet is needed for you to get the right dose.
  • FIRDAPSE can be taken with or without food.
  • If you miss a dose of FIRDAPSE, skip that dose and take your next dose at your next scheduled dose time. Do not double your dose to make up the missed dose.
  • Do not take FIRDAPSE together with other medicines known to increase the risk of seizures.
  • If you take too much FIRDAPSE, call your doctor or go to the nearest hospital emergency room right away.

What are the possible side effects of FIRDAPSE?

FIRDAPSE may cause serious side effects, including:

  • Seizures. See "What is the most important information I should know about FIRDAPSE?"
  • Serious allergic reactions, such as anaphylaxis. FIRDAPSE can cause serious allergic reactions. Stop taking FIRDAPSE and call your doctor right away or get emergency medical help if you have:
    • shortness of breath or trouble breathing
    • swelling of your throat or tongue
    • ­hives
  • The most common side effects of FIRDAPSE include:
    • tingling around the mouth, tongue, face, fingers, toes, and other body parts
    • upper respiratory infection
    • stomach pain
    • nausea
    • diarrhea
    • headache
    • increased liver enzymes
    • back pain
    • high blood pressure
    • muscle spasms

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

These are not all the possible side effects of FIRDAPSE.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

How should I store FIRDAPSE?

  • Store FIRDAPSE tablets at room temperature between 68ºF to 77ºF (20ºC to 25ºC).
  • Safely throw away FIRDAPSE tablets that are out of date or no longer needed.
  • Store FIRDAPSE prepared oral suspension in the refrigerator between 36°F to 46°F (2°C to 8°C) between doses for up to 24 hours.
  • Safely throw away unused FIRDAPSE oral suspension after 24 hours.

Keep FIRDAPSE and all medicines out of the reach of children.

General Information about the safe and effective use of FIRDAPSE

Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Do not use FIRDAPSE for a condition for which it was not prescribed. Do not give FIRDAPSE to other people, even if they have the same symptoms that you have. It may harm them. If you would like more information, talk to your doctor or pharmacist. You can ask your pharmacist or doctor for information about FIRDAPSE that is written for health professionals.

What are the ingredients in FIRDAPSE?

  • Active ingredient: amifampridine
  • Inactive ingredients: calcium stearate, colloidal silicon dioxide, and microcrystalline cellulose.

Please see full Prescribing Information for additional Important Safety Information.

What is FIRDAPSE®?

FIRDAPSE is a prescription medicine used to treat Lambert-Eaton myasthenic syndrome (LEMS) in people 6 years of age or older. It is not known if FIRDAPSE is safe or effective in children less than 6 years of age.

IMPORTANT SAFETY INFORMATION

What is the most important information I should know about FIRDAPSE?

  • FIRDAPSE can cause seizures.
    • You could have a seizure even if you never had a seizure before.
    • Do not take FIRDAPSE if you have ever had a seizure.
    • Stop taking FIRDAPSE and call your doctor right away if you have a seizure while taking FIRDAPSE.

Do not take FIRDAPSE if you:

  • have ever had a seizure.
  • are allergic to amifampridine phosphate, or another aminopyridine.

Before you take FIRDAPSE, tell your doctor about all of your medical conditions, including if you:

  • are taking another aminopyridine, such as compounded 3,4-diaminopyridine (3,4-DAP)
  • have had a seizure
  • have kidney problems
  • have liver problems
  • are pregnant or plan to become pregnant. It is not known if FIRDAPSE will harm your unborn baby. You and your doctor will decide if you should take FIRDAPSE while you are pregnant.
  • There is a registry for women who become pregnant during treatment with FIRDAPSE. The purpose of this registry is to collect information about your health and your baby’s health. Contact the registry as soon as you learn that you are pregnant, or ask your healthcare provider to contact for you by calling 855-212-5856 (toll free), contacting the Fax number 877-867-1874 (toll free), emailing the Pregnancy Coordinating Center at firdapsepregnancyregistry@ubc.com, or visiting the study website www.firdapsepregnancystudy.com.
  • are breastfeeding or plan to breastfeed. It is not known if FIRDAPSE passes into your breast milk. Talk to your doctor about the best way to feed your baby while taking FIRDAPSE.

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

How should I take FIRDAPSE?

  • If your dose is less than 5 mg, you have trouble swallowing tablets, or a feeding tube is needed, see the detailed Instructions for Use on how to take and prepare a suspension of FIRDAPSE.
  • Take FIRDAPSE exactly as your doctor tells you to take it.
  • Do not change your dose of FIRDAPSE.
  • Do not stop taking FIRDAPSE without first talking to your doctor.
  • FIRDAPSE tablets are scored and can be split if less than a full tablet is needed for you to get the right dose.
  • FIRDAPSE can be taken with or without food.
  • If you miss a dose of FIRDAPSE, skip that dose and take your next dose at your next scheduled dose time. Do not double your dose to make up the missed dose.
  • Do not take FIRDAPSE together with other medicines known to increase the risk of seizures.
  • If you take too much FIRDAPSE, call your doctor or go to the nearest hospital emergency room right away.

What are the possible side effects of FIRDAPSE?

FIRDAPSE may cause serious side effects, including:

  • Seizures. See "What is the most important information I should know about FIRDAPSE?"
  • Serious allergic reactions, such as anaphylaxis. FIRDAPSE can cause serious allergic reactions. Stop taking FIRDAPSE and call your doctor right away or get emergency medical help if you have:
    • shortness of breath or trouble breathing
    • swelling of your throat or tongue
    • ­hives
  • The most common side effects of FIRDAPSE include:
    • tingling around the mouth, tongue, face, fingers, toes, and other body parts
    • upper respiratory infection
    • stomach pain
    • nausea
    • diarrhea
    • headache
    • increased liver enzymes
    • back pain
    • high blood pressure
    • muscle spasms

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

These are not all the possible side effects of FIRDAPSE.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

How should I store FIRDAPSE?

  • Store FIRDAPSE tablets at room temperature between 68ºF to 77ºF (20ºC to 25ºC).
  • Safely throw away FIRDAPSE tablets that are out of date or no longer needed.
  • Store FIRDAPSE prepared oral suspension in the refrigerator between 36°F to 46°F (2°C to 8°C) between doses for up to 24 hours.
  • Safely throw away unused FIRDAPSE oral suspension after 24 hours.

Keep FIRDAPSE and all medicines out of the reach of children.

General Information about the safe and effective use of FIRDAPSE

Medicines are sometimes prescribed for purposes other than those listed in a Medication Guide. Do not use FIRDAPSE for a condition for which it was not prescribed. Do not give FIRDAPSE to other people, even if they have the same symptoms that you have. It may harm them. If you would like more information, talk to your doctor or pharmacist. You can ask your pharmacist or doctor for information about FIRDAPSE that is written for health professionals.

What are the ingredients in FIRDAPSE?

  • Active ingredient: amifampridine
  • Inactive ingredients: calcium stearate, colloidal silicon dioxide, and microcrystalline cellulose.

Please see full Prescribing Information for additional Important Safety Information.