Switching IV iron

In November we started back on weekly iron infusions because my numbers were down 75%. I’ve tried a few types of iron in the past but have never had to be on it longer term like I’m needing now.

Over the last few months I go through the weeks dreading my iron days. I’ve been getting the IV venofer, which is a large dose over 3ish hours. Fortunately there haven’t been any adverse reactions that made it impossible for me to take, but there are some “normal” side effects that have made the days miserable.

On a typical infusion day, I get my 2 hour hydration, then my Benadryl, ibuprofen, IV phenergan, a 20 minute wait for the benadryl to kick in, and then we start the iron. By the time we start the iron i’m so tired from the benadryl and phenergan that it makes me dizzy and even more nauseous than before. But, if I skip either of them, I have bad headaches, vomiting, and itchiness from the venofer. So there was really no way around the concoction.

Fast forward about 5 rounds of this regimen and I couldn’t stand it. The dizziness and nausea wouldn’t let up throughout the day and I’d end up crawling back into bed when we got home from the infusion center and staying there until bedtime…and then i’d sleep some more. On days I tried to “tough it out” I’d get a raging migraine and was so, so uncomfortable. Keep in mind, my baseline nausea is pretty bad, and my “wow i’m so nauseous” is really bad. So in retrospect, this was really bad! I can only relate this to my experiences with IVIG, where I was literally getting aseptic meningitis with every round. That shouldn’t be how I feel after iron! And this was happening once a week, sometimes bleeding into the next day.

Being a long-term patient, especially at my age (where I’m entering adult medicine and my parents aren’t as strong of advocates for me anymore), I can go on and on about how terrible something is, but at the end of the day I’m the only one who’s going to make anything happen. This can feel really lonely sometimes. For example, I was having these difficult experiences on the venofer, and my parents & Drew would offer up a lot of “I’m so sorry”s and “Can we do anything?”s but what I really wanted was to stop the venofer. So I did my research and talked to friends online who have experiences with IV iron and got some opinions.

I met with my PCP and she decided to try out IV Infed- another type of iron, which is much more potent and a little more risky. The dose is very small but takes about 6 hours to infuse, 8 hours on the first round because we needed to do a test infusion in the beginning. Usually my mom comes with me to the infusion center (or, anything haha. If you’ve been following along since the beginning you know we’re a pretty inseparable hospital duo!), but on this particular day my dad brought me to my appointment. Which made it a little more anxiety provoking, just because I’m not as used to it and he doesn’t know my routine down to a pat, but he was so sweet and we got in some good, quality time :)

I opted not to take benadryl with the Infed (unless I needed it, of course) in an attempt to minimize the dizziness. While no drug is perfect and everything comes with it’s own set of problems, the Infed has been a RELIEF. Since it’s such a strong infusion, I only have to get it monthly now rather than weekly, which is another plus! I’m hopeful that, with the Infed, we’ll be able to improve my iron values and hopefully gain a little bit of my brain power and energy back! God only knows!