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 more options to help them manage their disease.
CIDP overview
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 sent 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.
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. Myelin insulation allows electrical impulses to travel quickly and efficiently along nerves.
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 studies such as an 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.
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 the EAN/PNS* medical guideline as a CIDP maintenance treatment option
*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.
A list of resources is provided below. Simply click on the link below to view, download, or print your selected item.
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.
Hizentra Prefilled Syringes vs. Vials
Watch the video to see the simplicity of self-administering with Hizentra Prefilled Syringes vs. vials.
Step-by-step Instructions for Self-administering Hizentra
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
For more information, discussion boards, and support groups for people living with PI or CIDP, visit these websites:
Advocacy organizations
Health agencies
Important Safety Information
WARNING: Thrombosis (blood clots) can occur with immune globulin products, including Hizentra. Risk factors can include: advanced age, prolonged immobilization, a history of blood clotting or hyperviscosity (blood thickness), use of estrogens, installed vascular catheters, and cardiovascular risk factors.
If you are at high risk of blood clots, your doctor will prescribe Hizentra at the minimum dose and infusion rate practicable and will monitor for signs of clotting events and hyperviscosity. Always drink sufficient fluids before infusing Hizentra.
See your doctor for a full explanation, and the full prescribing information for complete boxed warning.
Hizentra®, Immune Globulin Subcutaneous (Human), 20% Liquid, is a prescription medicine used to treat:
- Primary immune deficiency (PI) in patients 2 years and older
- Chronic inflammatory demyelinating polyneuropathy (CIDP) in adults
Treatment with Hizentra might not be possible if your doctor determines you have hyperprolinemia (too much proline in the blood), or are IgA-deficient with antibodies to IgA and a history of hypersensitivity. Tell your doctor if you have previously had a severe allergic reaction (including anaphylaxis) to the administration of human immune globulin. Tell your doctor right away or go to the emergency room if you have hives, trouble breathing, wheezing, dizziness, or fainting. These could be signs of a bad allergic reaction.
Inform your doctor of any medications you are taking, as well as any medical conditions you may have had, especially if you have a history of diseases related to the heart or blood vessels, or have been immobile for some time. Inform your physician if you are pregnant or nursing, or plan to become pregnant.
Infuse Hizentra under your skin only; do not inject into a blood vessel.
Self-administer Hizentra only after having been taught to do so by your doctor or other healthcare professional, and having received dosing instructions for treating your condition.
Immediately report to your physician any of the following symptoms, which could be signs of serious adverse reactions to Hizentra:
- Reduced urination, sudden weight gain, or swelling in your legs (possible signs of a kidney problem).
- Pain and/or swelling or discoloration of an arm or leg, unexplained shortness of breath, chest pain or discomfort that worsens on deep breathing, unexplained rapid pulse, or numbness/weakness on one side of the body (possible signs of a blood clot).
- Bad headache with nausea; vomiting; stiff neck; fever; and sensitivity to light (possible signs of meningitis).
- Brown or red urine; rapid heart rate; yellowing of the skin or eyes; chest pains or breathing trouble; fever over 100°F (possible symptoms of other conditions that require prompt treatment).
Hizentra is made from human blood. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent and its variant (vCJD), cannot be completely eliminated.
The most common side effects in the clinical trials for Hizentra include redness, swelling, itching, and/or bruising at the infusion site; headache; chest, joint or back pain; diarrhea; tiredness; cough; rash; itching; fever, nausea, and vomiting. These are not the only side effects possible. Tell your doctor about any side effect that bothers you or does not go away.
Before receiving any vaccine, tell immunizing physician if you have had recent therapy with Hizentra, as effectiveness of the vaccine could be compromised.
Please see full prescribing information for Hizentra, including boxed warning and the patient product information.
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.
You can also report side effects to CSL Behring's Pharmacovigilance Department at 1-866-915-6958.