Whether you go to an infusion center or receive your immunoglobulin (Ig) at home, it is imperative that you know what product is being infused into your body. Are you receiving the product that was prescribed for you by your provider?
IDF is periodically notified by patients who are unable to get their prescribed product because their product was not available at the time they were scheduled to be infused. Consequently, they are sometimes infused with a different product. If both the prescribing provider and the patient were made aware of this issue and consented to a different product, that is fine. A substitution, however, should not be made unless both the patient and the prescribing provider are consulted, as Ig products are not interchangeable. What works for one may not be tolerable for another. This is why you need to take control of your care.
The reality is that there are sometimes temporary issues with supply of Ig products. The amount of product a distributor orders or contracts to receive from the manufacturer is based on their prior year sales/usage. Sometimes demand can surpass supply that was previously contracted for with many distributors across the U.S.
If your product is not available and a change needs to be made, then you and your prescribing provider need to be informed so you can determine what other options will work best for you.
Important information every patient should know:
- Ig product name
- Ig manufacturer’s name and patient assistance programs
- Amount Infused, frequency and rate
- The name and dose of any pre- and post-infusion medications
Important things to do:
- Report infusion related side effects to your healthcare provider.
- Track Ig product lot numbers & all infusion related information. IDF ePHR is perfect for this: www.idfephr.org.
- Register with the Patient Notification System for product recall information: www.patientnotificationsystem.org.
You have the right to know the specifics of your treatment plan. You have the right to ask and see the labels of the infusion related medications and product. You are in charge of making sure your treatment plan is followed appropriately, and if a provider is unable to provide you with what was ordered, you have the right to know this prior to your scheduled treatment.
Questions? Contact us: 800-296-4433 or www.primaryimmune.org/ask-idf.