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.
1) Patients should hydrate well ahead of time. We know that 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 seems to be the most contentious and can often be one of the things that can be changed. 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.
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 and/or Benadryl and or 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.
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.