Uncover patient resources

PATIENT EDUCATION IS VITAL TO TREATMENT SUCCESS IN YOUR CIDP, PIDD, AND ITP PATIENTS

Downloadable materials for your unique patient.

For your CIDP patients

For your PIDD patients

 

Useful websites for your patients

Please note: The GAMUNEX-C.com website is intended for US residents; however, we have included some links to patient and family resources, available in English, which originate outside the US, as they have generously been made available online as a global resource for everyone affected by immunodeficiency diseases.

In order to ensure that your patients get all the answers they might need at any point throughout their treatment, consider referring them to the following online resources.

CIDP websites

GBS-CIDP Foundation International
Providing support and assistance to GBS/CIDP patients and their families and committed to increasing knowledge and awareness in both the public and professional communities, GBS-CIDP Foundation International provides print information and educational opportunities; sponsors worldwide meetings, lectures, and support groups; hosts the biannual GBS/CIDP International Symposium; and encourages new findings by awarding research grants for further study and experimentation.

MedlinePlus
MedlinePlus can direct you to information to help answer health questions. MedlinePlus brings together authoritative information from the National Library of Medicine (NLM), the National Institutes of Health (NIH), and other government agencies and health-related organizations. Preformulated Medline searches are included in MedlinePlus and give easy access to medical journal articles. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and the latest health news.

National Institute of Neurological Disorders and Stroke
The mission of NINDS is to reduce the burden of neurologic disease—a burden borne by every age group, by every segment of society, and by people all over the world. NINDS is the leading supporter of biomedical research on disorders of the brain and nervous system.

Foundation for Peripheral Neuropathy
The mission of the Foundation for Peripheral Neuropathy is to help and heal people with peripheral neuropathy by providing neuropathy awareness, education, support, advocacy, and research.

PIDD websites

Immune Deficiency Foundation (IDF)
A national voluntary health organization, the IDF is a nonprofit organization dedicated to improving the diagnosis and treatment of PIDD through research and education. The goal of IDF is to help patients with PIDD and their families to live a healthy and productive life. It also strives for a broader understanding of PIDD through education and outreach efforts to patients and the medical community.

Worth taking a look at: IDF produces a variety of educational materials for patients and healthcare professionals. All publications are free of charge and can be printed from their website. IDF also sponsors local events such as patient meetings.

Check out the Patient and Family Handbook, a comprehensive resource for PIDD patients and their families.

Jeffrey Modell Foundation
The Jeffrey Modell Foundation is a nonprofit research foundation dedicated to the early and precise diagnosis, meaningful treatment, and ultimate cure of primary immunodeficiencies. 

Worth taking a look at: The site offers access to consumer publications, community and individual support through K.I.D.s (Kids with Immune Deficiencies) Days for patients and families, educational workshops, and more.

International Patient Organization for Primary Immunodeficiencies (IPOPI)
IPOPI is an international organization whose members are national patient organizations for PIDD. It unites the experiences, expertise, resources, and influence of its members to support the commitment to worldwide improvement in the care and treatment of patients with PIDD.

Worth taking a look at: Check out the FORUM section of the website. The postings are recent and come straight from patients and families. It's a good place to find support and make connections.

National Institute of Allergy and Infectious Diseases (NIAID)
The primary immune deficiency diseases page contains fact sheets, brochures, and news releases related to PIDD. It also has information regarding other immune defects, and related blood disorders.

Severe Combined Immune Deficiency (SCID) website
Barb Ballard, parent of a child diagnosed with SCID, started this website as a self-help support tool and resource guide for patients and families afflicted with SCID. The majority of the information links to information outside of the website.

ITP websites

In-depth look at ITP—eMedicine
An in-depth look at ITP by Michael A. Silverman, MD, Instructor, Department of Emergency Medicine, Johns Hopkins Bayview Medical Center, Saint Agnes Healthcare.

Worth taking a look at: Statistics provided on the frequency of ITP, the mortality/morbidity associated with the disease, and the sex and age of patients.

ITP Support Association
ITP patient and family education and support resource.

Platelet Disorder Support Association
Patient support website with information about ITP and other platelet disorders.

Gamunex Connexions Support 1-888-MYGAMUNEX (1-888-694-2686)

GAMUNEX®-C (immune globulin injection [human], 10% caprylate/chromatography purified) is indicated for the treatment of primary humoral immunodeficiency disease (PIDD) in patients 2 years of age and older, idiopathic thrombocytopenic purpura (ITP) in adults and children, and chronic inflammatory demyelinating polyneuropathy (CIDP) in adults.

Thrombosis may occur with immune globulin products, including GAMUNEX-C. Risk factors may include: advanced age, prolonged immobilization, hypercoagulable conditions, history of venous or arterial thrombosis, use of estrogens, indwelling central vascular catheters, hyperviscosity, and cardiovascular risk factors. Thrombosis may occur in the absence of known risk factors. For patients at risk of thrombosis, administer GAMUNEX-C at the minimum dose and infusion rate practicable. Ensure adequate hydration in patients before administration. Monitor for signs and symptoms of thrombosis and assess blood viscosity in patients at risk for hyperviscosity.

Renal dysfunction, acute renal failure, osmotic nephrosis, and death may occur with immune globulin intravenous (IVIG) products in predisposed patients. Patients predisposed to renal dysfunction include those with any degree of preexisting renal insufficiency, diabetes mellitus, age greater than 65, volume depletion, sepsis, paraproteinemia, or patients receiving known nephrotoxic drugs. Renal dysfunction and acute renal failure occur more commonly in patients receiving IVIG products containing sucrose. GAMUNEX-C does not contain sucrose. For patients at risk of renal dysfunction or failure, administer GAMUNEX-C at the minimum concentration available and the minimum infusion rate practicable.

GAMUNEX-C is contraindicated in patients who have had an anaphylactic or severe systemic reaction to the administration of human immune globulin. It is contraindicated in IgA-deficient patients with antibodies against IgA and history of hypersensitivity.

Severe hypersensitivity reactions may occur with IVIG products, including GAMUNEX-C. In case of hypersensitivity, discontinue GAMUNEX-C infusion immediately and institute appropriate treatment.

Monitor renal function, including blood urea nitrogen (BUN), serum creatinine, and urine output in patients at risk of developing acute renal failure.

Hyperproteinemia, increased serum viscosity, and hyponatremia may occur in patients receiving IVIG treatment, including GAMUNEX-C.

There have been reports of aseptic meningitis, hemolytic anemia, and noncardiogenic pulmonary edema (transfusion-related acute lung injury [TRALI]) in patients administered with IVIG, including GAMUNEX-C.

The high-dose regimen (1g/kg x 1-2 days) is not recommended for individuals with expanded fluid volumes or where fluid volume may be a concern.

Because GAMUNEX-C is made from human blood, it may carry a risk of transmitting infectious agents, eg, viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent, and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

Do not administer GAMUNEX-C subcutaneously in patients with ITP because of the risk of hematoma formation.

Periodic monitoring of renal function and urine output is particularly important in patients judged to be at increased risk of developing acute renal failure. Assess renal function, including measurement of BUN and serum creatinine, before the initial infusion of GAMUNEX-C and at appropriate intervals thereafter.

Consider baseline assessment of blood viscosity in patients at risk for hyperviscosity, including those with cryoglobulins, fasting chylomicronemia/markedly high triacylglycerols (triglycerides), or monoclonal gammopathies, because of the potentially increased risk of thrombosis.

If signs and/or symptoms of hemolysis are present after an infusion of GAMUNEX-C, perform appropriate laboratory testing for confirmation.

If TRALI is suspected, perform appropriate tests for the presence of antineutrophil antibodies and anti-HLA antibodies in both the product and patient's serum.

After infusion of IgG, the transitory rise of the various passively transferred antibodies in the patient's blood may yield positive serological testing results, with the potential for misleading interpretation.

In clinical studies, the most common adverse reactions with GAMUNEX-C were headache, pyrexia, hypertension, chills, rash, nausea, arthralgia, and asthenia (in CIDP); cough, rhinitis, pharyngitis, headache, asthma, nausea, fever, diarrhea, and sinusitis with intravenous use (in PIDD) and local infusion-site reactions, fatigue, headache, upper respiratory tract infection, arthralgia, diarrhea, nausea, sinusitis, bronchitis, depression, allergic dermatitis, migraine, myalgia, viral infection, and pyrexia with subcutaneous use (in PIDD); and headache, ecchymosis, vomiting, fever, nausea, rash, abdominal pain, back pain, and dyspepsia (in ITP).

The most serious adverse reactions in clinical studies were pulmonary embolism (PE) in 1 subject with a history of PE (in CIDP), an exacerbation of autoimmune pure red cell aplasia in 1 subject (in PIDD), and myocarditis in 1 subject that occurred 50 days post-study drug infusion and was not considered drug related (in ITP).

Please see accompanying full Prescribing Information for GAMUNEX-C.

Terms to know

IG=immune globulin, CIDP=chronic inflammatory demyelinating polyneuropathy, PIDD=primary immunodeficiency disease, ITP=idiopathic thrombocytopenic purpura, IV=intravenous.

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