A drug made from up to 100,000 healthy volunteers!
Intravenous Immune Globulin (IVIG)
Immune globulins (also called immunoglobulins) are antibodies. A large number of antibodies given in IVIG may help in some autoimmune disorders such as polymyositis and dermatomyositis. However, IVIG is not commonly used for SLE. It is useful in people who have a deficiency in IgG immune globulins (medically known as hypogammaglobulinemia) and have recurrent infections due to this. A person with hypogammaglobulinemia can benefit significantly from IVIG because it replaces the absent IgG globulins needed to fight infections.
Studies evaluating IVIG use in cutaneous lupus (chapter 8), lupus nephritis, muscle inflammation, low blood cell counts (to include myelofibrosis), lupus lung inflammation, myocarditis, arthritis, severe antiphospholipid syndrome, and neuropsychiatric lupus, have had encouraging results. A small 2012 study also suggested that it may help prevent congenital heart block in women with lupus who are SSA or SSB antibody positive. However, larger studies will be needed to see if IVIG should be used more often to treat lupus.
IVIG is produced from the antibodies of healthy blood donors. It takes anywhere between 1,000 and 100,000 donors for one dose. The preparation undergoes treatments to kill any potential germs and is thoroughly tested before using it for therapy.
How IVIG works: IVIG can decrease immune system overactivity.
What benefits to expect from IVIG: IVIG can decrease infections in people with low levels of IgG globulins. It can help the conditions noted in the paragraph above. In some people, it works rapidly, even within days after the first treatment.
How IVIG is given: Usually given as an intravenous (IV) infusion once or twice a month. A self-injectable form that can be given at home is available.
If you miss a dose of IVIG: Reschedule as soon as you realize that you missed your dose, then reset your schedule from that point. Consult with your prescribing doctor to double-check these instructions, but these guidelines will be enough for most people.
What needs to be monitored while you get IVIG: You will need to have periodic lab tests, including blood cell counts and kidney function tests.
Reasons not to take IVIG: Many IVIG brands are unsafe to receive if you have a deficiency in IgA globulins. Your IgA globulin level can be measured using a blood test similar to the one that measures IgG globulin levels. Gammagard S/D and Polygam brands of IVIG are generally safe to use if you are IgA deficient. Pre-existing heart disease, kidney disease, and a history of blood clots may increase your risk of having these sorts of problems on IVIG. Discuss these possibilities with your doctor.
If you have severe IgA deficiency, you should receive IVIG that does not contain IgA, or it should be provided in a hospital setting. Patients with severe IgA deficiency can sometimes develop severe allergic reactions (anaphylaxis) to IVIG containing IgA immunoglobulins.
While taking IVIG therapy: See your doctor regularly for appropriate blood tests. Seek medical attention immediately if you develop a red, painful, swollen leg; shortness of breath; chest pain; slurred speech; or arm or leg weakness.
Vaccines and IVIG: No need to stop drug or time dosing with inactivated vaccines (such as for influenza, pneumonia, and COVID-19). IVIG may decrease the response to some live vaccines. Ask your doctor about timing with any live vaccines (such as Zostavax, yellow fever, MMR, and others).
Pregnancy and breastfeeding while on IVIG: IVIG can be used for severe lupus flares during pregnancy. Some think it may help prevent congenital heart block progression due to anti-SSA antibodies.
It can be used during breast-feeding.
Older people and IVIG: There may be an increased risk for side effects such as kidney problems, heart problems, and blood clots.
What to do at the time of surgery with IVIG: IVIG can potentially increase blood clots and probably should not be used close to the time of surgery. Check with the prescribing rheumatologist and infusion doctor for more information.
Potential Side Effects of IVIG
Nuisance side effects
Mild infusion reactions (headache, muscle and joint aches, fever, hives, chills, stomach upset, nausea, abdominal pain)
Elevated liver enzymes
Anemia and low white blood cell counts
Rash, skin vasculitis
Serious side effects
High blood pressure = common, treated with blood pressure medicines
Severe allergic reaction (anaphylaxis, low blood pressure, wheezing) = uncommon, treated by the nurses during the infusion
Severe headache, aseptic meningitis = uncommon. May be prevented with antihistamines, steroids, and pain medicines. May need to stop medicine.
Kidney failure = rare
Increase in lupus flares = rare
Blood clots = rare
Side effect incidence key (approximations, as side effects can vary widely study to study): rare < 1% occurrence; uncommon 1%–5% occurrence; common > 5% occurrence
If you have been treated with IVIG, what was your experience like? Please share in the Comments section above
The above is an excerpt from "The Lupus Encyclopedia" by Johns Hopkins University Press. This is a preliminary draft for the 2nd edition, before print
A Johns Hopkins Lupus Clinic study suggests so...
Sunspots related to lupus activity? Are the Johns Hopkins doctors crazy?
- They are not crazy. I know George Stojan, MD and Dr. Michelle Petri, MD well. They are two of the smartest lupologists in the world.
- Previous research in Germany suggested health changes related to magnetic storms and sunspots (specifically while studying heart attacks by Halberg F, et al.)
- The Lupus Clinic at Johns Hopkins compared disease activity in their center from 1996 to 2020 and compared it to solar cycles, sunspots, and geometric disturbances.
- They found that increased sunspots (called solar maximum in the solar cycle) was followed by lower disease activity on average in their patients.
- Increased geomagnetic activity was also associated with lower disease activity.
- This is another study suggesting how important our environment is regarding lupus.
When will there be milder lupus activity as predicted by sunspots?
- Of course, this is all hypothetical, and this research needs to be reproduced.
- If it is correct, our most recent time of fewer sunspots was DEC 2019 (the least solar activity in 100 years)
- NASA predicts that solar maximum will occur in July 2025 with 115 sunspots (179 is the average)
- The previous solar maximum was in APR 2014 with 114 sunspots. Since Dr. Stojan's research included that sun cycle, this upcoming cycle should be similar.
- Therefore, SLE patients may look forward to the Fall and Winter, Northern Hemisphere (this was a Northern Hemisphere study) of 2025 as a period of having milder lupus attacks.
Note... this is all very interesting, but I would not put my money on it until further research is done
Stojan G, Giammarino F, Petri M. Systemic lupus Erythematosus and geomagnetic disturbances: a time series analysis. Environ Health. 2021 Mar 16;20(1):28. doi: 10.1186/s12940-021-00692-4. PMID: 33722240; PMCID: PMC7962208.
Halberg F, Cornélissen G, Otsuka K, Watanabe Y, Katinas GS, Burioka N, Delyukov A, Gorgo Y, Zhao Z, Weydahl A, Sothern RB, Siegelova J, Fiser B, Dusek J, Syutkina EV, Perfetto F, Tarquini R, Singh RB, Rhees B, Lofstrom D, Lofstrom P, Johnson PW, Schwartzkopff O, the International BIOCOS Study Group. Cross-spectrally coherent ~10.5- and 21-year biological and physical cycles, magnetic storms and myocardial infarctions*. Neuro Endocrinol Lett. 2000;21(3):233-258. PMID: 11455355.
NASA: What Will Solar Cycle 25 Look Like?
Latest evaluation and recommendations:
Note that Dr. Thomas' posts are for informational purposes only, and are not meant to be specific medical advice for individuals. Always seek the advice of your healthcare provider with any questions regarding your own medical situation.
DONALD THOMAS, MD