By Kaveh Ardalan, M.D., Duke University School of Medicine, Cure JM Center of Excellence, Susan Shenoi, MBBS, MS, RhMSUS, Seattle Children’s Hospital, Cure JM Center of Excellence, and Suzanne Edison, M.A., M.F.A., Mental Health Coordinator
The questions about what to do before and post-IVIg to prevent side effects come up often. We know that IVIg can be a very beneficial treatment for JDM, yet it is not without potential side effects. Please read further to minimize the event’s trauma and prevent side effects, e.g., nausea, severe headaches, etc.
Pre-IVIg:
1) Patients should hydrate well ahead of time. Not all IVIg sessions are pre-treated with oral or IV glucocorticoids (prednisolone, prednisone, or iv methylprednisolone), but many are. Also, not all pretreatment involves Tylenol/Benadryl or some combination. But we do recommend that parents ask about these.
2) Parents should keep their kids hydrated during the IVIg infusion.
3) The infusion times/rates vary widely, and this one aspect is the most contentious and can often be one of the things that can change. Slowing down the rate of the infusion often helps mitigate side effects. Some patients can also receive these over a longer duration as an at-home infusion or during an inpatient stay.
Most review papers on use of IVIG state that slowing the rate to minimize adverse events is advisable. In many cases, the rate will begin slowly and increase every 30 minutes until you reach the max rate. Some clinicians recommend a first-time infusion rate that maxes out at 2.0 ML/KG, though you should discuss this with your doctor to understand the max rate at which your IVIG will be infused. If your child feels unwell during the infusion, please inform the nurse and/or doctor immediately.
Some references:
https://pubmed.ncbi.nlm.nih.gov/16391392/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6008653
4) Some families find that increasing the dose of oral prednisone three days before the infusion is helpful.
Post-IVIg/Prevention of Side Effects:
1) Sometimes, parents are told to keep up the Tylenol or Benadryl and NSAIDS like ibuprofen for 48–72 hours post-infusion. Give these as scheduled.
2) Sometimes, patients are prescribed Zofran for nausea or another medicine.
3) An iv bolus/bag of saline before IVIg, plus some of the other recommendations above, can mitigate the headaches and nausea.
Other Considerations:
In general, we recommend hydration with not just water but electrolyte-containing liquids such as lemonade or Gatorade.
Rarely switching the brand of IVIg might also help if all else fails (IgA content may be a predictor of adverse effects of IVIG (Manlhiot, C., Tyrrell, P. N., Liang, L., Atkinson, A. R., Lau, W., & Feldman, B. M. (2008). Safety of intravenous immunoglobulin in treating juvenile dermatomyositis: adverse reactions are associated with immunoglobulin A content. Pediatrics, 121(3), e626-e630.
Some may opt to use migraine medications like rizatriptan to help with headaches.
