IVIG approval resources

Because IVIG treatment is costly, patients and doctors generally need to build a case that the treatment is warranted. One path is to look for evidence of autoimmunity through auto-antibody testing. Auto-antibodies plus symptoms would support the diagnosis of an autoimmune condition. IVIG has been used in the treatment of auto-immune SFN / SFPN (small fiber polyneuropathy), various autoimmune diseases such as multiple sclerosis, and may show promise for (autoimmune) POTS.

For more information on auto-antibody testing for SFN and POTS, see this page.

Multiple sclerosis is diagnosed through conventional medical tests and does not require novel, unconventional auto-antibody tests to diagnose.

This is not a recommendation for IVIG

It is possible that IVIG is no better than placebo for many conditions (including those that you may have). See this report for arguments against healthcare spending on IVIG including references to systematic reviews on the use of IVIG.

Please find out about the potential risks and side effects of medical treatments before you seek them out.

Scientific papers discussing IVIG treatment of conditions commonly found in long haulers

• How We Treat Autoimmune Small Fiber Polyneuropathy with Immunoglobulin Therapy - https://doi.org/10.1159/000498858

Our experience with the use of IVIg in patients with autoimmune autonomic neuropathy matches that which has been reported by Oaklander and Flanagan with a response rate of approximately 75–80%. Many patients improve by 80–90% of their pre-illness level of functioning.

• IVIG for apparently autoimmune small-fiber polyneuropathy: first analysis of efficacy and safety - https://pubmed.ncbi.nlm.nih.gov/29403541/

Overall, 74% of patients rated themselves 'improved' and their neurologists labeled 77% as 'IVIg responders'; 16% entered remissions that were sustained after IVIg withdrawal. All adverse events were expected; most were typical infusion reactions. The two moderate complications (3.6%) were vein thromboses not requiring discontinuation. The one severe event (1.8%), hemolytic anemia, remitted after IVIg discontinuation.

• Evidence of small-fiber polyneuropathy in unexplained, juvenile-onset, widespread pain syndromes - https://pubmed.ncbi.nlm.nih.gov/23478869/

Treatment with corticosteroids and/or intravenous immune globulin objectively and subjectively benefited 80% of patients (12/15).

Note: the article above describes treatment with corticosteroids. Some long haulers see a very noticeable increase in symptoms with corticosteroids so a conservative approach towards corticosteroids may be prudent.

from https://pubmed.ncbi.nlm.nih.gov/29326369/

• Successful treatment of postural orthostatic tachycardia and mast cell activation syndromes using naltrexone, immunoglobulin and antibiotic treatment - https://pubmed.ncbi.nlm.nih.gov/29326369/

A patient with severe postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS) received immunotherapy with low-dose naltrexone (LDN) and intravenous immunoglobulin (IVIg) and antibiotic therapy for small intestinal bacterial overgrowth (SIBO). A dramatic and sustained response was documented.

• New diagnosis of multiple sclerosis in the setting of mRNA COVID-19 vaccine exposure - https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8656147/

We report a series of 5 cases of newly diagnosed MS following recent exposure to mRNA COVID-19 vaccines. [...] Neurological manifestations and clinical course appeared to be typical for MS including response to high dose steroids in 4 cases and additional need for plasmapheresis in one case.

Note: Plasmapheresis refers to the combination of IVIG and the removal of antibodies via apheresis. See the list of approaches page for more information on plasmapheresis.

Support group

The IVIG for V & C19 support group is a place where patients share information about sympathetic doctors, information on testing for autoimmune SFN / small fiber polyneuropathy, etc. etc.