Preparation for Iron Infusions

Blog Post #5

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“I expected the exhaustion

And the days I couldn’t get out of bed

I expected the prescriptions

And the pain I felt in my head. 
I thought slowly I’d start feeling better 
I’d stitch my life back together

One day at a time

In one long straight line

But healing f***ing hurts sometimes.” 

These words are so relatable to my path of living a life with chronic illness, specifically Ehlers Danlos Syndrome, and as a result, malabsorption issues. This has led me down the road of Iron infusions, as nothing else I’ve tried was bringing my levels to a stable & functional place. I worked with a Functional Medicine Practitioner and wanted to try a more holistic approach, but with my malabsorption issues that really wasn’t an option for me in the long run. 

Before moving forward with iron infusions, I had tried iron pills, liquid iron, increasing my food intake with food high in iron, but my body was just not absorbing it. Turns out I don’t only have iron deficiency anemia, I actually have what Hematologists refer to as Pernicious Anemia. To rule this out, you would have to ask for your Intrinsic Factor to be checked via blood work. Pernicious Anemia in short is when one’s body has trouble absorbing or processing vitamin B12. As a result of this malabsorption, my red blood cells have a reduced capacity to carry oxygen. Due to this, I am also getting monthly B12 injections until my levels are more stable. However, my Hematologist believes this will be a necessity for life. I am attempting to combat this with proper nutrition, but malabsorption is a real issue in our community. 

Back in August of 2022, I had endured a few months of Iron Infusions. Unfortunately, my levels are back to a state of iron infusions being a necessity again. My hematologist explains it as, “Danielle, you are a car running with no engine”. Sometimes, it’s okay to feel hopeless. I have tried everything to combat this, but my connective tissue disorder really plays a role in this. Unfortunately, my Ferritin is back down to 4 and my Iron Saturation is a 5. 

After many months of ongoing iron infusions last year and currently preparing again, I feel called to share my experiences with each of you. Please, please, please, before proceeding with infusions do a ton of research & be prepared for any type of reactions to the Iron. I don’t care how much Hematologists promise reacting to iron is a rare/uncommon experience, it is NOT and iron infusions are causing many in the female/chronic illness population to be hospitalized for months due to low phosphorus or also known as Hypophosphatemia. If you are going to move forward with Iron Infusions, please stay far away from Injectafer. I opted for Venofer. 

Advocate for ALL necessary blood work prior to your first infusion, especially phosphorus (so you can have a baseline number). If you ensure most of your levels, such as magnesium, potassium, vitamin D, vitamin B12, etc are in a safe range, the higher the chance you will have a better reaction to your infusion. 

At first I began with infusions 2X/weekly and then weaned off to 1X a week. Each of my infusions took a total of about 3 hours. We began each infusion by pre-medicating with Benadryl for a half hour intravenously. Then slowly dripping the iron over the course of 2 hours. And then at the end, flushing with saline for another half hr. Factors that made a difference for my person experience: 
- stay well hydrated prior to your infusion, during your infusion and after your infusion

- bring research articles with you in the case that you have to advocate 

- advocate for yourself prior to your 1st infusion

- dress comfy and bring layers and a blanket

- bring something to entertain yourself or take a nap if the benadryl makes you sleepy 

- if you are someone that has already experienced anaphylactic reactions due to MCAS, know this is a possibility from the iron infusion. (I experienced an Anaphylaxis reaction after my first). Be prepared to act accordingly and have a toolkit handy. 

- after your initial iron infusion, you must advocate to have your phosphorus levels checked again! Discuss with your Hematologist how soon after is necessary for your individual case. Do NOT proceed with iron infusion #2 until you ensure your phosphorus is stable. I highly suggest joining a FB support group for Hypophosphatemia so you can avoid this potentially long term side effect at all costs! 

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Another blog post to come about what a Diagnosis can mean.