"Each Summer, My Weakness Became So Severe" - When Heat Denatures Medication

Rebecca's story highlights the importance of proper temperature controls with medications.

"I receive the IV Immunoglobulin product, Privigen, through home care, and the medication until recently was sent through UPS Ground. I receive these infusions twice a month to treat Myasthenia gravis, which is a life threatening autoimmune disease in which antibodies bind and block signal activity in the neuro-muscular junction causing severe muscle weakness. If not appropriately treated it can escalate to full body paralysis and death as it also affects the muscles, including those needed to breath.

"The Privigen I receive keeps me stable. Prior to beginning this medication, I was hospitalized repeatedly due to life threatening muscle weakness. Privigen is protein immunoglobulin that is recommended to be stored under 77 degrees Fahrenheit. At higher temperatures it denatures and loses its therapeutic activity.

"For the past year and a half it was not sent in a cooler and without any ice packs via UPS ground, even in the summer months and I suffered terribly for it. Each summer, my weakness became so severe that I was struggling to walk a few steps around the house, accomplish basic selfcare, and even stand up from a chair. I was struggling to swallow and choking regularly leading to aspiration and pneumonia. This was a significant deterioration in my condition. I was also having negative reactions to the infusions that included body aches, fevers, headaches, nausea, and vomiting, when previously I had experienced no side effects.

 "After a prolonged battle with our home infusion service and their associated pharmacy in which my neurologist and our insurance provider also contacted the company demanding appropriate packing and using a currier service instead of UPS ground, we finally succeeded and this past week I received a shipment via currier with my medication in a cooler with ice packs.

 "This infusion was the first that I have derived benefit from since summer began. Things were getting so bad that I feared that another ineffective infusion would have led to a hospitalization. I still have a way to go before I have recovered from going months without appropriate treatment, but this proves the importance of appropriate shipping for temperature sensitive products."