Iron Infusions May Be Beneficial for Women With Hemophilia

Originally published on Hemophilia News Today by BioNews, Inc.

Iron deficiency has always been a part of my life as a woman with the bleeding disorders hemophilia B and von Willebrand disease. Iron is essential for your body to function, I have learned. One cause of iron deficiency is bleeding. When I am anemic, or my iron is low, my ears ring, my head hurts, and my heart beats fast and hard. I feel like someone turned my energy dial to the low setting.

Iron deficiency is a common cause of anemia. According to the Cleveland Clinic, “If you have anemia that is not treated, it could lead to an arrhythmia (irregular heartbeat), an enlarged heart or heart failure. You are also at greater risk of getting infections and becoming depressed.”

On Aug. 10, I attended a webinar on iron deficiency and bleeding disorders presented by Claudio Sandoval, MD, and Factor My Way, a patient support program.

“Iron deficiency and bleeding both have underlying causes, which must be identified. One unifying diagnosis is an underlying bleeding disorder,” Sandoval said. He stressed that a hematologist should check women with iron deficiency for a bleeding disorder.

Iron pills

My doctors prescribed me iron pills for iron-deficiency anemia for much of my life. I wouldn’t say I liked the pills. An upset stomach and constipation were just some of the side effects. I would take them three times a day, but they made very little difference. My ferritin level would stay between 1–10 mcg/L, which is below the normal range for women of 11–307 mcg/L.

When I switched hemophilia treatment centers in January 2020, my new hematologist suggested an iron infusion. My ferritin was low, and I was periodically anemic, despite the iron pills. I was grateful for the suggestion and looking forward to trying something different.

The iron infusion

An iron infusion delivers iron directly into your bloodstream. I had two iron infusions one week apart in September 2020 at the Tampa hospital affiliated with my hemophilia treatment center. An overnight stay was not necessary. I drove two hours each way and spent a couple of hours at the infusion center each time.

At the first appointment, the nurses at the infusion clinic couldn’t find a vein. Two nurses used me as a pin cushion and gave up. My tiny veins like to roll. Two other women were also designated a hard stick. We marched across the street to the radiology department, following the medical assistant like ducks in a row.

The radiologist had a magical ultrasound machine that guided him to the exact vein to put the catheter in for the IV. I can think of many instances when this machine would’ve helped me avoid multiple sticks. Once we had our IVs in place, we marched back to the infusion clinic. The nurses didn’t even try to find the vein for my second appointment, sending me straight to the radiologist.

My infusion cocktail included Injectafer (ferric carboxymaltose injection), a steroid, and an antihistamine. The Injectafer was bright orange, and it was a bit disconcerting to watch it drip into my vein. Besides being a little achy the following day, I had no side effects.

The best news of all? Since the iron infusions, I am not iron deficient for the first time in my life. My ferritin level has held above 50 mcg/L for two years, and I am not anemic.

If you are a woman with a bleeding disorder and have anemia or iron deficiency, I suggest you speak with your hematologist about an iron infusion. It certainly helped me.