Bad reaction to iron infusion today (long)

I had or I guess I should say attempted to get my second Infed iron infusion today.  I had a test dose last week and was monitored at the hospital and then given the full dose.  I had no reactions.

Fast forward to this afternoon, I get to the chemo center.  The nurse finally gets the IV and then starts the infusion.  Within minutes I felt nauseated.  As soon as I realized I was going downhill I called for the nurse.  Within seconds, my ears were ringing, I had severe nausea, shortness of breathe, was seeing stars, etc.  All I remember hearing was the nurse yelling get the doctor.  He took one look at me and asked if my chest was so red when I got there.  I glanced down and it was more red than any sunburn I ever had.  They pumped me full of steriods and then asked if it would be possible to get a ride home so they could give me a full dose of benedryl.  I was now breathing ok, but could feel hives all over my back.  Once they got that in the hives went away.  They pumped me full of fluids and took my vitals every few minutes.  Once the initial reaction was under control, I began to shiver uncontrollably.  My teeth were chattering so hard, I was afraid I'd break a tooth.  He was going to give me demoral, but the nurse asked him to hold off a few minutes and we covered me with about 3 fleece blankets.  It took about half an hour to get the shaking under control.

So now they are going to appeal to my insurance company again, to approve me Ferrlicit since I had a reaction to the Infed.  I know my insurance will deny it.  I'm not sure what direction we will go.  With my ferritin a 2, we need to do something.  So the plan is to call insurance Monday.  Insurance will say they have 30 days to make a decision.  I'm pretty sure they will deny it again as they consider ferrelcit an experimental drug although it's been used since the late 90's.  I'm not sure if there are other types out there to try.  I guess it's back to Google for me.

In the meantime, they want me to come back next week to try this a little differently.  This time they will give me the steriods and benedryl before staring the iron.  They will do another test dose to see if they can tolerate it.  I'm really scared for this next round.

Hi Jennifer, Wow! You've really had a rough time. I'd be scared if I were you too. One thing I want to ask because I am almost in the same situation, my ferritn is down to 7, had you been taken iron prior to this? and what kind was it? I have read in Michelle's (Vitalady) posts that Tender Iron (for some reason) seems to bring up the ferritin levels very nicely. Currently, I am taking 8 Bariatric Advantage iron chewables with additional C now but think I will call Vitalady and get some of the Tender Irons...I think she posted that she takes about 12 a day. I am afraid of this happening to me, I seem to react to so many things. Hopefully she'll see your post and reply. I hope things improve for you, Sue

I'm going to try the Tender Iron.  My surgeon told me to quit taking the oral supplement I was on because he said I obviously wasn't absorbing it and it caused such severe cramping.  I'm talking like curled up in a  ball cramping.  My ferritin took a nose dive when I was pregnant.  It's true when they say not to worry about the baby getting what they need, that our bodies are the ones that suffer.  We want to start trying for another next summer but can't until this issue is resolved.

Jen sorry to hear about you reaction. I had a terrible reaction to Ferrlicit which was the first one my dr used. InFed worked just fine for me, well so far this past 2 yrs anyway. A reaction can happen anytime. If insurance covered one they most likely will cover the other knowing you had the reaction you did, they shouldn't take 30 days. If you had that kind of reaction say NO to trying it again, it can be dangerous, you body already rejected InFed.

Hang in there and let us know how you are and keep taking benedryl till all signs of reaction are gone. Took me days to get rid of the hives.

The insurance company won't approve the ferrlicit because the FDA approval for it says for iron deficiency anemia in long term hemodialysis patients.  Since I'm not on dialysis, they consider it an expermential drug for me.   UGH!

I'm so sorry to hear of your ordeal.  I, too, take InFed infusions and the one thing my hematologist stressed greatly was the amount of time it would take to complete it to avoid potential side effects.  It took me 4 hours, but I had no side effects with the exception of being cold, but I was used to walking around w/ a sweater in the summer!  I seriously doubt the staff would admit they goofed, but even after a successful test dose, it should be administered very slowly...I bet they'll do just that next time, but just in case let them know that's what you want IN ADDITION TO the benadryl!!!  Hope this helps.

We talked about slowing it down even more this next time also.  They funny thing is that when I had the test dose at the hospital, the pharmacy sent up 1.5 cc to be pushed through the IV in two minutes.  I refused.   They called the dr. and he insisted they do it as a very slow drip.

Hi Jennifer I replied to you in the Missouri board - but wanted to here as well.  I'm getting my infusion done today and they're using Dextran on me.  Not sure how that compares to what you had, or what everyone else has had - as this is my first ever infusion.  Mine is getting done (pushed, whatever you call it) over 4 hours, after they do a test dose, then wait an hour to make sure there's no reactions.  So it looks like I'll be there for about 6 hours or so today.  Sounds about right, from what I've read about iron infusions.  How long does it take after an iron infusion for you to feel better?  Soon, I hope.  Is it normal to have to go again in a week to get another one?  My ferritin level is 9.  So I guess it depends on how my body responds to this infusion as to whether I need to go again?  Do they wait so many days after an infusion to check your blood levels to see if the infusion brought everything up?  Sorry you had so many problems Jennifer.  I hope you are able to get your insurance to approve something that will work for you. 

what is an iron infusion and why do you need it

I'm not familiar w/ Dextran Traci, but I know I had two options -either take Ferlicit weekly for 8 wks, or do a one time dose of Infed in 4-6 hours.  I'm guessing Dextran is more similar to Ferlicit, which is supposed to have less potential side effects since it's given over an extended period of time.  I chose the one time InFed because of finances ($35 copay/per visit) and a hopefully quicker bounce back to normal levels.  I felt better within a week (less cold, more energy), but my hematologist checks levels after about 8 wks since ferritin is stored and it takes time for all the "storing" to take place, which won't be until 11/26.  Interestingly enough, he told me not to take any iron in the meantime, so I'm really anxious to see if this worked!