Get the facts about life with CIDP

If you or someone you love has chronic inflammatory demyelinating polyneuropathy (CIDP), it's still possible to live a full and rewarding life. Thanks to new therapies and medical advances, people living with CIDP have new options to help them manage their disease.

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What is chronic inflammatory demyelinating polyneuropathy (CIDP)?

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare disorder of the nervous system. Though your immune system generally keeps you healthy by fighting off germs, with CIDP, your immune system does not recognize parts of your nerves and attacks them.

Specifically, the immune system mistakenly attacks your nerves’ protective myelin. When the myelin is damaged or removed, messages transmitted to and from the brain are disrupted and may never make it to their final destination.

Over time, this may cause gradual weakness and a loss of feeling in your arms and legs.

Other symptoms may include, but are not limited to:

  • Tingling or numbness beginning in the toes and fingers
  • Weakness of the arms or legs
  • Loss of reflexes
  • Fatigue

If left untreated, CIDP can cause permanent damage to the nerves.

What is myelin?

Nerves are responsible for sending messages to and from the brain, like when you want your hand to grasp an object or when your hand tells your brain the stove is hot. Healthy nerves are wrapped in a sheath called myelin, much like electric wires wrapped in rubber insulation. The insulation allows electric impulses to travel efficiently along.

How is CIDP diagnosed?

Diagnosis of CIDP is based on symptoms such as loss of sensation (numbness), abnormal sensation (tingling and pain), loss of reflexes, and weakness (difficulty walking, foot drop).

Tests may include nerve conduction and EMG (electromyography) (usually showing a demyelinating neuropathy), spinal fluid analysis (usually showing elevated protein with normal cell count), and blood and urine tests (to rule out other disorders that may cause neuropathy and to look for unusual proteins).

The number of new cases per year of CIDP is about 1 to 2 per 100,000 people, but as the disease can be present in a person for years prior to diagnosis, the prevalence reflecting the accumulation of cases over time may be as high as 9 per 100,000 in some areas.

How is CIDP treated with Ig?

Ig therapy is a type of treatment that is infused into the body to help block the immune system from attacking the nerve myelin, though exactly how it works is not completely understood.

Ig therapy is made from the blood plasma of carefully screened, healthy donors. While the risk of transmitting infectious agents cannot be completely eliminated, advanced manufacturing processes, including virus reduction steps, are always used in the production of Hizentra.

Since Ig is made from plasma, it needs to be infused, and Ig infusions are typically given 2 ways:

  • Into the vein (intravenous Ig, or IVIg), by a medical professional every 3 weeks, either at a medical facility or in your home
  • Just below the skin (subcutaneous Ig, or SCIg). SCIg is typically self-administered using an infusion pump and a relatively small needle, administered once weekly in 1–2 sessions over 1–2 consecutive days

You and your doctor can decide which type of Ig therapy is right for you.

Subcutaneous Ig is strongly recommended by EAN/PNS* medical guideline for CIDP maintenance

* The European Academy of Neurology (EAN) and Peripheral Nerve Society (PNS) are two independent, international organizations of scientists, physicians, and other healthcare providers working together to investigate and treat neurological conditions and promote excellence leading to better care and outcomes.

Learn about the benefits of Hizentra for people with CIDP

Are there any materials I can review?

A list of resources is provided below. Simply click on the link below to view, download, or print your selected item.

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Doctor Discussion Guide

This guide will help you talk to your doctor about your condition, treatment options, and the unique features of Hizentra. Simply print this out and bring to your next doctor’s appointment.

View/Download PDF
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Hizentra Self-administration Video

Watch the Hizentra self-administration video to learn the step‑by‑step instructions on preparation, proper infusion techniques, and administration.

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Step-by-step instructions for Self-administering Hizentra

Step‑by‑Step Instructions for Self‑administering Hizentra

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Tips for living with CIDP

The following tips will help people with CIDP

  • Work collaboratively with your doctor to manage your CIDP, and ask about treatments that can fit easily into your lifestyle
  • The effectiveness of therapy depends on many factors, including how early the condition was diagnosed and how quickly you begin treatment.
  • Relapse prevention is very important. Make sure you are monitoring your body for the return of symptoms. If you are pushing yourself too hard and feel a return of symptoms, give yourself a break, and make sure to inform your doctor of any significant changes in how you feel
  • Accommodations in the home may be needed to facilitate daily living activities
  • For more information, visit the GBS/CIDP Foundation International website at www.gbs-cidp.org

Organizations that can help

For more information, discussion boards, and support groups for people living with PI or CIDP, visit these websites:

Join us for a free, live educational program for people with CIDP and their caregivers!

These programs feature a presentation from a trained nurse and stories from a patient just like you.

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Hizentra Live In-Person Events

Come to a free educational event for people with CIDP and caregivers.

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Hizentra Live Webinar Series

Take part in our live webinar series where you can ask questions and join in the discussion.

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