PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician. These articles reflect the subjective experience of the patient while living with neuropathy and Intravenous Gamma Globulin Infusions
Facts About Intravenous Gamma Globulin (IVIg). By LtCol Eugene B Richardson, USA (Retired) BA, M.Div., Ed.M., MS (Counseling) and patient with CIDP/Autonomic PN for 42 years due to exposure to Agent Orange.
What is Intravenous Gamma Globulin (IVIg)?
Dr. Norman Latov, MD PhD of Weill Medical College, Cornell University, states that intravenous gamma globulins or IVIg as it is often known; (a plasma product) consists of purified pooled blood obtained from thousands of individuals. Everything is removed from the pooled blood except the anti-bodies that help us fight disease and infections. This product is infused intravenously into a patient with an autoimmune or immune mediated neuropathy. It is thought to work by protecting the patient’s peripheral nerves from the patient’s own immune system (anti-bodies) which are attacking the Peripheral Nerves and when IVIg attaches itself to the patient’s damaged peripheral nerves the damaged nerves attempt to function at increased levels.
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An excellent source of information can be found at FFF Enterprises BioSupply Quarterly, which publishes a quarterly magazine on the issues of IVIg. Their website is at BioSupply Quarterly:
Contact the Neuropathy Action Foundation and at the bottom of the opening page you will find their phone number and e mail address. Dominick Spatafora has MMN and fought to get IVIg and established this organization to help patients fight insurance company denials.
What Neuropathies are treated with Intravenous Gamma Globulin (IVIg)?
IVIg is used for many diseases, the most common of which are patients with immune deficiencies. Since some neuropathies are immune mediated (involve a malfunctioning immune system), it is used for neuropathy patients with Guillian Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Multifocal Motor Neuropathy (MMN), Multifocal Demyelinating Sensorimotor Neuropathy, Autoimmune Autonomic Neuropathy, Small Fiber Neuropathy and their variants, plus some Neurologists recommend it for the most serious cases of diabetic neuropathy when the patient’s condition reflect the diagnostic criteria for CIDP. (See “IVIg Effective in Diabetic Related Inflammatory Neuropathy” by Laurie Barclay, MD, University of Miami, May 2002 Issue of Archives of Neurology)
What are the characteristics of Intravenous Gamma Globulin (IVIg) and why are these important?
The product has the characteristics of a thick sponge and this is important for two reasons.
First, as recommended by the manufacturers of pre-bottled brands, the mixture MUST be brought to room temperature BEFORE it is infused into the patient. Before the product is brought to room temperature it will look cloudy. It clears when warmed to room temperature. Unless this is done, the product will often cause difficulty with the infusion machines due to its spongy thickness. Some patients have experienced more difficulty with some of the normally known temporary reactions (headaches, dizziness, mild flu like symptoms) to the product when it is not brought to room temperature or if the stabilizer used is sucrose. The better products now do not use sucrose as a stabilizer and this has been related to more serious allergic reactions. The solution: Bring the product to room temperature before infusion as noted in the product information brochure.
Second, the product tends to draw water to itself and in some patients may result in fluid build-up in the body that must be addressed during the treatment. The first nine months of my infusions, I told the infusion clinic that I felt like I was drowning. Unfamiliar with IVIg, it was difficult for the medical staff to understand and when I insisted there was a problem, clinical denial became a policy of stubborn refusal to listen to the patient.
I ended up in the emergency room with the words, “You are having a heart attack.” No, but what I had was fluid retention and this was solved by advice from experienced IVIg patients to which the new neurologist listened. The solutions: Use a product brand with the least amount of fluid to product ratio, if fluid retention is an issue. Consider Lasix IV pre and post infusion. Slow the infusion to 30ml/hr and keep it there. Problem solved!
GENERAL: It is important that the patient or a representative be proactive in reading the product brochure that comes with the product. Follow up testing and blood work may be important and some physicians have ordered the infusion of the product mixed with saline with which it is incompatible. Physicians and other medical staff may not be familiar with the products use. While the brochure is very technical, your physician may not be familiar with the product and you must be able to ask the proper questions on follow up blood work and the cautions to patients noted in the product literature.
NOTE: Copyright 2010-15 Network For Neuropathy Support, Inc. dba Neuropathy Support Network.. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at E-mail: email@example.com
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.