When did I start receiving Intravenous Gamma Globulin (IVIg) and how did this happen? 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.
Having lost two great careers, surrounded by whispers of “crazy” from employers and fellow workers, with denials from disability administrators and doctors, the struggle to find emotional stability in the mix of these symptoms can only be referred to, as a great miracle or something that only God could have provided the strength to endure.
It was sometime in early 2004 that I found an article by 21 well known brilliant neurologists. The article was published in the Journal of the Peripheral Nervous System 8:282-284 (2003) “Guidelines for the Diagnosis and Treatment of Chronic Inflammatory Demyelinating Polyneuropathy” (CIDP). (There is a cost to purchase the right to view this article for a limited time unless you are a member of the Peripheral Nerve Society.) This became the knowledge that saved my life and yet even in 2015 with some improvement by doctors, it is sometimes as if the article had never been written for too many patients faced with such medical denial.
When I told Dr. Walter Bradley of the University of Miami about this experience with the article (he helped write it), he said that many doctors rejected the article stating it was medical opinion and not research. I told Dr. Bradley that since it was medical opinion that tortured me for decades it seems appropriate that it would be medical opinion that brought me hope!
Now I did not even have a diagnosis of CIDP at this point, but it did not seem to matter as everything I read seemed to fit the symptoms “somewhat” and it looked like IVIg might offer some hope. One neurologist still wrote “probably CIDP”, claimed the IVIg was only reducing pain, and wanted to stop the treatment with IVIg!
After the experience of going without it for 43 days in 2005, he probably would have killed me.
While the diagnosis may be called some other type of autoimmune or immune mediated neuropathy, from my viewpoint as a patient, the diagnosis of CIDP right or wrong was only a road to obtain help. IVIg use was still off label in 2004 with Medicare fighting or denying its use as medically unnecessary for this condition. Medicare strung out the doctor at the first infusion site for two years before finally paying him. IVIg would not be recognized as on label until 2007 and then only for CIDP, then later for Multifocal Motor Neuropathy (MMN).
With all of this surrounding background, here was an article that talked about a “trial” of IVIg if nothing else seemed to point in the right direction and the patient was getting worse. So I gave this article to my neurologist and ask “what do you think?” He ordered the IVIg and my first infusion was in April 2004. For many of my symptoms, I responded to the treatment within hours of the first infusion and for other symptoms, it took a bit longer to respond.
Hope springs eternal and my future seemed a bit brighter.
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: 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. These articles reflect the subjective experience of the patient while living with neuropathy and Intravenous Gamma Globulin Infusions