We’d like to give a HUGE thanks to our October meeting guest speaker Natalie McGill, Walgreens Patient Advocate. Her wonderful PowerPoint presentation of Walgreens’ IVIG home infusion services was very insightful and informative. Natalie couldn’t have been nicer explaining her experiences with IVIG as her treatment of Myasthenia Gravis (a neuro-skeletal auto-immune disease she was diagnosed with at 17).
We took notes during her talk so we could share a few of the presentation highlights:
IVIG is intravenous immunoglobulin, for Wikipedia’s explanation click here. IVIG has been extremely successful in treating DM patients where other medications have failed. PM patients also have shown improved muscle strength with IVIG, although most IBM patients have only seen marginal improvements in their health. One of the biggest topics Natalie discussed was the fact that home infusions offer you both comfort and convenience. IVIG takes hours to administer, and being able to get your infusions while still in your pajamas seemed like a great bene. No drive-time and parking hassles, no hospital waiting rooms and exposure to other immune risks, no sharing the nurses with other patients.
The loading dose for IVIG starts at 2 grams/kilogram (based on your weight) and is infused over 2-5 days. The maintenance dose is reduced to 1 g/kg and is repeated monthly (or whatever is the right amount of time for you between doses). Natalie had found over her years of treatment that at 3 weeks she starts feeling drained and the effects of the treatment wearing off, so she gets her infusions every 3 weeks.
Common side effects for the infusions are headaches and nausea, but there are pre-meds available (Benadryl and ibuprofen) to lessen those adverse effects. Natalie also talked about hydration treatments being used to reduce the severity of headaches. Hydration treatments are administered in a drip about 30 minutes before your infusion, similar to what would be given in the hospital to someone who is dehydrated. Slowing the rate of infusion is also a way to reduce the adverse effects, so if you feel a headache starting it’s important to let the administering nurse know so they can slow it down! This was another point that was incredibly important – your administering RN needs to be with you the ENTIRE time of your infusion. It is NOT okay for them to leave to visit another patient, if there are any complications during the infusion it is imperative you have qualified staff at your side! Walgreens makes sure your nurse is only assigned to you during your infusion, but if you get home infusions with another company make sure your RN doesn’t go AWOL. Every patient is given an anaphylactic kit, if you are going to have an allergic or systemic reaction to the infusion time is of the essence! You’re worth every minute of their time, and should never settle for less.
Natalie also spoke about us being well-informed about our choices for IVIG. Did you know there are many different brands of IVIG? I didn’t before our meeting! If you are going on IVIG, talk with your doctor about the best brand for your circumstances. Some IVIG use sodium or sugar as their stabilizer – so if you are diabetic or have renal dysfunction those types are definitely not for you! Natalie pointed out that Walgreens is able to contract with ALL IVIG brands, whereas hospitals usually contract with only a few because of cost reasons. You’ll be able to tailor your treatments better with home infusions, and Walgreens even has financial hardship forms that provide services on sliding scale to those unable to afford their infusion regimen. IVIG for neuromuscular diseases like myositis is covered under Medicare Part D.