IVIG approval resources
Because IVIG treatment is costly, patients and doctors often 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.
IVIG is FDA approved for six conditions. The first two conditions listed are relevant to long haulers, though most long haulers do not seem to have the symptoms of either condition such as 'strawberry tongue'.
- Kawasaki disease. NOTE: Kawasaki disease has many of the same symptoms as MIS-V (MIS-C/MIS-A), or multi system inflammatory syndrome caused by vaccination. Case reports of MIS regularly describe the use of IVIG for this rare condition.
- immune thrombocytopenic purpura (ITP)
- primary immunodeficiency
- secondary immunodeficiency
- pediatric HIV infection
- prevention of graft versus host disease (GVHD)
- infection in bone marrow transplant recipients
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. It references systematic reviews on the use of IVIG for various conditions.
Please find out about the likelihood of benefit, potential risks and side effects of medical treatments before you seek them out.
The study list on this page is intentionally biased in favour of IVIG advocates and evangelists.
Doctors have different opinions on IVIG and testing for autoimmunity
Some doctors will not want to prescribe IVIG (and to convince your insurance company to pay for it) even if you test positive for auto-antibodies and have evidence of an autoimmune condition. You can ask your doctor/specialist about his/her opinion on IVIG and whether or not it would be considered if you were to test positive on autoimmunity tests.
Similarly, doctors have different opinions on the use of non-standard auto-antibody tests that are not currently mainstream.
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 less risky. (Other long haulers seem to benefit from corticosteroids. So, they could be useful for long haul.)
- 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.
- IVIg Therapy in PANDAS: Analysis of the Current Literature - https://www.davidsyounger.com/sites/default/files/blog_pdf/Attachment%20L.pdf
Children with PANDAS, often with baseline humoral immune deficiency derive a favorable response to IVIg in PANDAS at 12 months follow up consistent with its role in Ig replacement and immune modulation.
Note: PANDAS = Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. As the word pediatric suggests, this condition is found in children.
- [Multiple sclerosis-like symptoms following vaccination] COVID-19 mRNA vaccination leading to CNS inflammation: a case series
Within one to 21 days of either the first (n = 2) or second (n = 5) vaccine dose, these patients developed neurologic symptoms and MRI findings consistent with active CNS demyelination of the optic nerve, brain, and/or spinal cord. Symptoms included visual loss, dysmetria, gait instability, paresthesias, sphincter disturbance, and limb weakness. [...] All responded to corticosteroid (n = 7) or plasma exchange (n = 1) therapy, with five returning to baseline and two approaching baseline.
- [Small-fiber neuropathy] Peripheral Neuropathy Evaluations of Patients With Prolonged Long COVID - https://doi.org/10.1212/NXI.0000000000001146
Treatments comprised corticosteroids in 35.3% (6/17) and IV immunoglobulins (IVIg) in 35.3% (6/17). Five were initially dosed at 2.0 g/kg/4 weeks and 1 at 1.6 g/kg/4 weeks. The 5 patients who received repeated IVIg, and their neurologists, reported benefit (e.g., Figure 1, Table 1).
- Autonomic neuropathy—in its many guises—as the initial manifestation of the antiphospholipid syndrome - https://doi.org/10.1007/s12026-016-8889-4
anecdotal experience has suggested that antithrombotic therapy and intravenous immunoglobulin therapy may result in significant clinical improvement in these patients
- Intravenous Immunoglobulin Therapy in Refractory Autoimmune Dysautonomias: A Retrospective Analysis of 38 Patients - https://pubmed.ncbi.nlm.nih.gov/29781817/
There is increasing evidence that IVIG is safe and effective in a subset of patients with autonomic disorders and evidence for autoimmunity. A 4-month IVIG trial should be considered in severely affected patients who are refractory to lifestyle and pharmacological therapies. Antiphospholipid antibodies and novel Sjögren antibodies are often present in these patients and correlate with a high response rate to IVIG.
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.