Living with AIP | PANHEMATIN® (hemin for injection)

LIVING WITH Acute intermittent porphyria (AIP)

AIP attacks can occur at different times with varied frequency.
It’s important to be prepared for them so you can get timely treatment.

Being Prepared Addressing Challenges Discussing AIP

Being Prepared

Having a medical emergency plan is important, especially for someone living with a serious health condition like AIP. Because urgent situations can escalate quickly, an AIP attack plan helps ensure that your doctors, caregivers, and loved ones are notified in a crisis. It can also assist other healthcare professionals who are not familiar with AIP, by providing critical information about the treatment required to manage an attack.

Below are two important tools for you to keep on hand in case an AIP attack should occur.

Image of a woman and her loved one looking at a cell phone, a patient portrayal

AIP Medical Emergency Letter

Talk to your doctor about creating a medical emergency letter. Having your critical care plan in writing can be especially helpful when you experience an urgent situation, and are away from home, at work, or traveling. Tell your healthcare provider to visit panhematin.com/hcp/letter.

AIP Attack Plan Worksheet

Work with your doctor to complete this interactive worksheet before an emergency AIP attack occurs. Include critical contact information, such as your healthcare providers’ names and phone numbers, as well as emergency contact information for your loved ones, all in one document. Keep it on hand in the event of an emergency.

Download

Addressing Challenges

If you have been diagnosed with AIP, or your doctor suspects AIP and has ordered laboratory testing, stay positive. With the right care and treatment, you can meet the challenges that come with a serious condition like AIP.

There are steps you can take on your own or with support to stay as healthy as possible:

Identify possible triggers. AIP attacks often occur when multiple triggers happen at once. Keep track of what happens before attacks, note patterns, and discuss them with your doctor to help reduce risk.

Exercise and eat well. Moderate exercise and a balanced diet are important. Avoid rapid weight loss, fasting, or low-carb/keto diets without consulting your doctor or nutritionist.

Watch for early warning signs. Some people have symptoms that occur hours or even a few days before an AIP attack, like pain other than abdominal pain, brain fog, irritability, tiredness, headache, or insomnia.

Talk to your doctor about chronic symptoms like abdomen pain or other gastrointestinal symptoms such as nausea. Some people experience ongoing or occasional symptoms like tingling, numbness, loss of feeling, or muscle pain between AIP attacks that may or may not be related to AIP.

Discussing AIP

Everyone’s experience with AIP is unique—from symptoms to diagnosis to daily management. At some point, you’ll likely need to explain AIP to family, friends, or colleagues. The resources below can help them understand the condition and help them support you.

Living with AIP Brochure

This brochure will help you understand AIP, how it affects your body, and how you can manage your condition.

Download

AIP Discussion Guide

This guide explains how AIP may impact your life, and is a helpful tool to share with your family and friends so they have a better understanding of your condition.

Download

What is PANHEMATIN?

PANHEMATIN (hemin for injection) is a prescription medicine used to relieve repeated attacks of acute intermittent porphyria related to the menstrual cycle in affected women, after initial carbohydrate therapy is known or suspected to be inadequate.

Limitations of Use

  • Before administering PANHEMATIN, consider an appropriate period of carbohydrate loading (i.e., 400 g glucose/day for 1 to 2 days).
  • Attacks of porphyria may progress to a point where irreversible nerve damage has occurred. PANHEMATIN therapy is intended to prevent an attack from reaching the critical stage of nerve breakdown. PANHEMATIN is not effective in repairing nerve damage that has already occurred.

IMPORTANT SAFETY INFORMATION

Who should not use PANHEMATIN?

Do not take PANHEMATIN if you are allergic to this drug.

Before starting PANHEMATIN, tell your healthcare provider (HCP) about all your medical conditions, including if you are pregnant or plan to become pregnant, breastfeeding or plan to breastfeed. Tell your HCP about all the...

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INDICATION(S) AND IMPORTANT SAFETY INFORMATION

What is PANHEMATIN?

PANHEMATIN (hemin for injection) is a prescription medicine used to relieve repeated attacks of acute intermittent porphyria related to the menstrual cycle in affected women, after initial carbohydrate therapy is known or suspected to be inadequate.

Limitations of Use

  • Before starting PANHEMATIN, your doctor may consider an appropriate trial of carbohydrates or sugar per day for 1 to 2 days.
  • Attacks of porphyria may progress to a point where irreversible nerve damage has occurred. PANHEMATIN therapy is intended to prevent an attack from reaching the critical stage of nerve breakdown. PANHEMATIN is not effective in repairing nerve damage that has already occurred.

IMPORTANT SAFETY INFORMATION

Who should not use PANHEMATIN?
Do not take PANHEMATIN if you are allergic to this drug.

Before starting PANHEMATIN, tell your healthcare provider (HCP) about all your medical conditions, including if you are pregnant or plan to become pregnant, breastfeeding or plan to breastfeed. Tell your HCP about all the medicines you take, including any prescription and over-the-counter medicines, vitamins, or herbal supplements.

What are the possible side effects of PANHEMATIN?

PANHEMATIN may cause side effects including:

  • Vein inflammation is possible. Your doctor will use a large arm vein or a central line to administer PANHEMATIN to minimize the possibility of vein inflammation.
  • Elevated iron levels may occur. Your doctor must monitor your iron levels if you receive multiple courses of PANHEMATIN.
  • PANHEMATIN has a short-term and mild blood thinning effect. Avoid blood thinners during PANHEMATIN therapy.
  • Reversible kidney shutdown has occurred when too high a dose of PANHEMATIN was given in a single dose.
  • PANHEMATIN may carry a risk of transmitting agents that can cause infections, such as viruses, and theoretically, the Creutzfeldt-Jakob disease (CJD) agent or other unknown agents.

The most common side effects of PANHEMATIN include headache, fever, infusion site reactions, and vein inflammation.

These are not all the possible side effects of PANHEMATIN. Call your HCP for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Call 1-800-FDA-1088 or visit www.fda.gov/medwatch.

When taking PANHEMATIN, do not take drugs such as estrogens (e.g., oral contraceptives), barbiturates (drugs that help with sleep and used to treat epilepsy) or steroids (body hormone-like drugs), because such drugs can trigger an attack or make an attack worse.

PANHEMATIN® (hemin for injection), for intravenous infusion only, is available as powder for reconstitution in 350 mg vials.

Please see the accompanying full Prescribing Information.