Restless Legs Syndrome Foundation Blog

January 25, 2023

My Experience with Iron Infusion

I was 12 years old in the summer of 2002 when I began having trouble sleeping. I would wake up in the middle of the night with creepy, crawly feelings in my legs and an immediate urge to get up and move around. I would walk downstairs to my parents’ bedroom to explain what was happening, only to have the symptoms stop when I got to their room. These episodes occurred throughout the night and led to exhaustion, daytime sleepiness and poor grades at school.

I was evaluated by six doctors in six medical specialty areas who could not pinpoint what was causing my sleep problems – or even give it a name. I was told multiple times that I was experiencing “growing pains” that would eventually go away. Finally, I was diagnosed with restless legs syndrome (RLS), and my family’s primary focus became finding a treatment plan to manage my symptoms. When one person’s sleep is affected, the whole family feels the impact of nightly sleep disruptions.

I tried several conventional RLS treatments, however, none thoroughly relieved my symptoms. My ferritin level was tested and found to be considerably low. Because I was so young at the time, intravenous (IV) iron wasn’t an easily accessible option for me. So, I began a course of oral iron to see if I could raise my ferritin level. For about 14 years, I tried several different oral iron preparations, combinations of oral iron, and different dosages and times of administration, but tests confirmed that none of these treatment strategies was effective in raising my ferritin level above the 75–100 mcg/L target range for individuals with RLS.

My RLS doctor tracked and plotted my ferritin level with successive iron tests. Despite my adherence to oral iron administration guidelines, I eventually reached a point where the iron stores in my body would not meet or exceed mid-level values for ferritin. At that point, my RLS doctor discussed with me the risks and benefits of IV iron, coordinated my care with a hematologist, and provided instructions for IV iron administration for me as an RLS patient.

In 2016, I found a hematologist to administer IV iron as a way to increase my ferritin level. For my first iron infusion, I received low-molecular-weight iron dextran (INFeD). Other formulations of IV iron were used in subsequent infusions.

Iron infusions are relatively easy procedures that, from start to finish, take about two to six hours, depending on the type of iron formulation approved by your insurance company. First, the nurse checks your vital signs and sets up equipment to monitor your pulse and blood pressure. Second, an IV is started, and a test dose of the iron preparation is administered by IV. This is followed by an observation period of up to one hour. During the observation period, the nurse watches to make sure there aren’t any allergic reactions to the test dose. If you do not experience any allergic reactions, the nurse administers the full IV iron dose via a pump to ensure a controlled rate of infusion. Throughout the infusion period, the nurse continues to monitor your vital signs and check to see if you are having any unusual feelings that may indicate a side effect of the therapy. Once the iron infusion is complete, the IV cannula is removed, vital signs are checked for the last time and you are allowed to go home.

Since my first iron infusion, I’ve received this treatment about once every two years. I’ve noticed two main symptoms that usually indicate my ferritin levels are low: feeling more tired during the day and restless feelings in my legs. That means it’s time for another iron infusion.

For me, iron infusions have made a significant difference in helping to increase my ferritin levels, which in turn make my RLS more manageable. I still limit my caffeine intake, exercise daily, and maintain a normal sleep schedule by trying to go to bed and wake up around the same times each day. However, I know that my increased ferritin levels, resulting from iron infusion therapy, have led to a significant decrease in the restless sensations that would otherwise keep me awake at night and seriously affect my quality of life.

For more information see Evidence-based and consensus clinical practice guidelines for the iron treatment of restless legs syndrome/Willis-Ekbom disease in adults and children: an IRLSSG task force report.