By Ronale Tucker Rhodes, MS
“Does anyone know of others in (fill in city and state here) who are being treated with IVIG?” That is the type of question that appears from time to time in my daily Google alerts that keep me abreast of news on the topic of intravenous immune globulin (IVIG). Of course, this is a person who is desperately trying to connect with others like them. And, I often wonder after I read these questions, “Did they find someone?”
If I told you there are a lot more people out there like you than you could ever imagine, would you believe me? People who are ill enough to need IVIG to allow them to function daily or even to keep them alive? You may not have met anyone in your social circle, but you’d be surprised how much company you actually have. Here are some interesting facts:
Fact 1: IVIG is currently only approved by the FDA to treat six diseases. These include primary immunodeficiency (PIDD); immune thrombocytopenia purpura (ITP); chronic inflammatory demyelinating polyneuropathy (CIDP); multifocal motor neuropathy; B-cell lymphocytic leukemia; and Kawasaki syndrome.
Fact 2: But, the number of diseases that are not approved by the FDA to be treated with IVIG far exceeds the five listed above. This is because IVIG has been proven useful for many disease states, but manufacturers don’t pursue FDA approval because of the high cost of conducting clinical trials without the benefit of increased marketing advantages. Some diseases not approved by the FDA but commonly treated with IVIG are Guillain-Barré syndrome, polymyositis, dermatomyositis, stiff person syndrome, relapsing-remitting multiple sclerosis and pemphigus. And, anecdotal reports suggest IVIG is effective in treating autoimmune neutropenia, autoimmune hemolytic anemia, Evans syndrome and acquired hemophilia, especially when other therapeutic modalities fail.
Fact 3: In addition, in the not-too-distant future, it’s possible that IVIG may be used to treat even more diseases, including Alzheimer’s, secondary recurrent miscarriage, chronic regional pain syndrome (CRPS), rheumatoid arthritis, anti-neutrophil cytoplasmic antibody disorders, systemic sclerosis/scleroderma and Still’s disease.
Since becoming the editor of IG Living magazine, I’ve learned a great deal about the different types of chronic illness and that the names of these diseases are not just labels; instead, they represent individual human beings - moms, dads and kids - all of whom want to find others to share their experiences. Perhaps knowing which diseases are being treated with IVIG will allow you and others to find people just like you and them to connect with.
To comment on this blog scroll down. How have you reached out and connected with others within the IG community?