Iron Infusion (Share Your Experiences)

Finally got my iron infusion scheduled. My hematologist had her resident take over my appointment and the resident agreed with my request for iron infusions and wrote my prescription. I have to get three weekly infusions for 3 weeks, then re-test and have a follow up appointment in 3 months. Also, I decided to log into all my online charts from various drs/hospitals and found that basically I've been anemic or low normal since 2017 so they can't gloss it over as a bariatric symptom. I'm gonna ask my doctor for all my iron results ever since he has access to the e-health system. I'm also going to request the celiac test and do the full panel. As in 2016 when I had mid range, I believe I was vegan (or vegan-ish) still. Also, when I had my 2nd blood clot, I had to increase my dosage by 75% to reach optimal INR levels despite weighing less than I did when I had my first clot and I had to be on really high dosages for thyroid medications when I was hyperthyroid.

Anyway, what were you iron infusion experience? They said the first IV they will administer really slow in case of an allergic reaction, but I'm assuming that aside from a case of an allergic reaction most side effects will mild to none?

Yes, I had to have pretty much like you 3 treatments and lab tests ever 6 months. Make sure you use a Heme iron (Or Ferrets or Tender Iron or Celebrate Iron +C) every day per instructions. I can eat all the protein in the world and still get low iron, you MUST take a heme iron, or it wont work at all. This is just my personal experience, yours may vary. (No it doen't hurt, you just sit for 30 minutes with and IV ) once your Iron is up talk to a hematologist and make sure he runs labs every 6 months.

Warmly,

Jackie

My current hematologist appointments are every three months and I get labs before every appointment. Plus, with my post- op follow up appointments, I feel like for the next year with them overlapping, I'll probably get my iron tested every two months. I've been on iron supplements since 2010 and always take it with vitamin C (either tablet or from food). Surprisingly, my iron is slightly higher than pre-op labs in December, but I want to be in the mid range.

The only reason I mention veganism and possibly having celiac is that non-heme iron found in plants is not as easily absorbed as heme iron (in meat) and vegan are advised to consume 200% of the RDA recommendations for iron. My iron was over 200% higher than it was in December 2018 (pre-op) when I was vegan compared to when I was omni and on iron supplements. This is pre rny, so not rny related.

I've been having iron infusions on and off for almost 14 years. I've never had an allergic reaction to any of the drugs I've been given. I've also never had any side effects from my infusions. Most cases I either worked through the infusion or went straight to work following the infusion.

Some drugs worked better than others. The latest infusions I've had seem to have worked the best and maintained my iron levels.

I started with Ferrlicit - Worked OK but required many infusions. I was so anemic at the beginning I had infusions twice a week for a couple of weeks, then once a week for a month, then twice a month. Seemed to take forever and never really lasted very long.

Next was Venofer - also worked OK. Infusion itself wasn't bad (I think less than 30 minutes). I think this one was once a week for a couple of weeks. Honestly can't remember.

Last was Injectafer. New drug that was developed exclusively for people who have problems absorbing oral iron. This infusion was April 2017 and it turned out perfect. My last labs (December 2018) my ferritin was still over 200. Schedule I believe was two infusions a week apart - each one took 15 minutes.

I really had no problems with my infusions it was really fairly simple... I just had 6 months ago and I don't remember any side effects.

I've had to have them recently. It's pretty simple. At my appointments, they just hook you up and you sit there and watch TV until the bag is empty. Easy peasy!