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. Order a copy of Dr. Latov’s book from amazon: Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop
IG Living is a FREE periodical for patients living on or considering IVIg therapy for autoimmune neuropathies and other illnesses and you may subscribe at IG Living: IG Living is the only magazine dedicated to bringing comprehensive healthcare information, immune globulin information, community and reimbursement news and resources for successful living directly to immune globulin consumers and their healthcare providers.
IG Living published an article stating what many of us have know for years, that IVIg Brands are different. For example: Gamunex 10% Liquid is approved for treating Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) while Gammagard Liquid 10% has been approved for treating Multifocal Motor Neuropathy (MMN). I have used both with great results, but some years ago discovered that Gammagard Liquid 10% worked better for me.
This year (2015) in going to a new infusion room, we tried to use a different brand and switch away from Gammagard Liquid. Then we realization that this new brand was not working and my motor nerves quit for three days after the infusion and left me wheelchair bound with many other painful and disturbing flare-ups of symptoms. Now knowing that my neuropathy has damaged my motor nerves more than the sensory, does it not make sense that the use of a product, approved for helping the motor nerves in MMN, is somehow an important fact. What is the subtle difference in the brands that made this happen? Have no idea and I hope that someday research can help here. We switched back to Gammagard Liquid 10% and I was fine again.
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 MEDSCAPE article “IVIg Effective in Diabetic Related Inflammatory Neuropathy” by Laurie Barclay, MD, University of Miami, May 2002 Issue of Archives of Neurology. However it is available only to doctors!
IG Living has an article on Diagnosing and Treating Chronic Inflammatory Demyelinating Polyneuropathy with IVIg.
IG Living has an article on treating Multifocal Motor Neuropathy with IVIg.
IG Living has an article on Diagnosing and Treating Guillian Barré Syndrome with IVIg.
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 and has your doctor prescribe only products which DO NOT have sucrose as a stabilizer.
Second, the product tends to draw water to itself and in some patients this 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. In fact we did not find out until years later that the problem was caused by the product brand which was 5% of product to fluid ration) so the amount of fluid was double what it should have been. The solutions: Use a product brand with the least amount of fluid to product ratio, (example 10% of product to fluid are the best products) if fluid retention is an issue.
In 2014 when I went to the VA Clinic in Sunrise, Florida to see if I might be able to have my infusion done in the VA if I travel, the VA Neurologist put me through ALL the tests AGAIN, because she and her advisor could not see demyelination. This is not the first time Neurologist claimed no demyelination. Now I do not know how to read the testing, but you would think that training would fix this problem which only added to the ‘medical games’ played by doctors who wanted to second guess Dr. Emery my Neurologist and the many years of proven effectiveness of IVIg treatments. After sending me for the painful tests again at the VA, they sent me to a Neurologist at the University of Miami who was VERY knowledgeable and said and I quote: “Why did they do this? Of course you have both axonal damage and demyelination. You have motor, sensory and small fiber damage which is significant. Stay with Dr. Emery for your treatment.”
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. 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 2010-16 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: firstname.lastname@example.org
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.