Sharing my 1st Feraheme intravenous iron injection experience

on 2/23/11 11:22 am - Pueblo, CO
As promised, here's my experience with Feraheme...

I arrived at the cancer center at 12:30pm to have labs drawn first (CBC, iron/ferritin/TIBC).  Then I was escorted to chemotherapy to get set up for the injection.  I took my pick from several comfy recliners & sat down to work on a word search puzzle for about 10 minutes.  Then the very sweet attendant (I was going to say nurse, but I just realized I'm not sure if there's a specific title for the person who administers IV therapies...anyone know?) came over & explained a little bit about the Feraheme while she got my IV set up & started a saline drip.  Flu-like achiness is apparently a very common side effect, so they administer oral Tylenol as a standard course of practice, as well as 25mg of IV Benadryl as a preventive measure against allergic reaction.

Once the 20-minute drip of Benadry flnished, she came back with the syringe of Feraheme, which she slowly injected into the IV over about 5 minutes.  The Benadryl made me drowsy so I dozed off & on over the hour that I had to stay for observation.  After the hour, I was still feeling a little loopy, so my husband came to pick me up & took me to lunch while the rest of the Benadryl wore off.  Then I was able to drive myself home (45 minutes away.)

I'd been told to expect possible achy joints and/or lower back for the next couple of days, and so far tonight I am feeling some mild aching in my neck & shoulders.  I may take some more Tylenol before bed, but it's totally bearable. 

So that's my experience so far...I go back next Weds for the 2nd injection.  I'm not sure how soon it's supposed to take effect, but hopefully soon!  I'll update more next week.

I didn't get the iron/ferritin/TIBC results today because they send them off to the lab, but they ran the CBC in-office, so for basic reference, here are my low results:

RBC:  4.09 (4.1-5.5)
HGB:  12.0 (13.0-16.0)
HCT:  36.2 (38.0-48.0)
Guate Wife
on 2/23/11 11:55 am - Grand Rapids, MI

Can't wait to hear the results in your Iron levels!

       ~ I am the proud wife of a Guatemalan, but most people call me Kimberley
Highest Known Weight  =  370#  /  59.7 bmi  @  5'6"

Current Weight  =  168#  /  26.4 bmi  :  fluctuates 5# either way  @  5'7"  /  more than 90% EWL
Normal BMI (24.9)  =  159#:  would have to compromise my muscle mass to get here without plastics, so this is not a goal.

I   my DS.    Don't go into WLS without knowing ALL of your options:

on 2/23/11 3:02 pm - Topeka, KS
Thank you for this update.
(deactivated member)
on 2/23/11 9:53 pm - San Jose, CA
Did they tell you it would be quicker after you have the first one?

I had my first infusion in 2009 - the first time, they put it in slowly (no pre-treatment with tylenol or benadryl though) and since I had no reaction, they next two infusions were done faster. About an hour to get the two syringes.

Those first infusions lasted me 18 months. My ferritin went from 12 or so to 79. After 18 months, it had dropped to 23, so I'm having 3 more infusions. I've had the first, two more coming up. The worst part for me is driving to San Mateo from San Jose - about 40 miles - because the hematologist is one who works with Rabkin and "gets" DSers, and that getting the infusion BEFORE the ferritin goes really low is better than trying to fix it when it's bad.

The hard thing to get used to is that you are the only healthy patient in the place - everyone else is there for chemo. Ugh. Makes you feel damned lucky.
on 2/23/11 10:40 pm - Pueblo, CO
Hey Diana!  I had my first infusion in 2009, too.  4 weekly infusions of Ferrlicet (about 1.5 hours each) and my ferritin went from 7 to 90.  It steadily declined over roughly 16 months, and I'm anemic again now (ferritin was 6 a couple weeks ago!)  This time, though, my PCP sent me to a hematologist & he ordered this Feraheme injection.  I'd posted asking about it recently, but only one other person had any experience with it, so I said I'd post my experience in case anyone else was looking for different options.

The Feraheme is a little different than a typical infusion in that it's just a super short IV (not IM) injection...the actual push was literally 5 minutes!  The hour I had to spend there after was strictly for observation, and the 20-minute Benadryl drip/tylenol beforehand were precautionary.  Evidently, though, Feraheme has much less risk of allergic reaction compared to the typical Infed or Venofer infusions.  It was originally designed for patients on dialysis, I guess.  With Feraheme, you go once & then a second time a week later, and that's it.  Should be good to go for at least a year, but as with anything, ymmv.

One of the best things about it so far is that since it's an "injection" and not an "infusion", my insurance considers it an office service, similar to something like an in-office allergy shot.  So it's covered 100% under my policy, unlike an outpatient procedure where I'd have to pay a co-pay and then 20%.
on 3/4/11 3:01 am - Davidson, NC
 Hi Scorpio,

I was searching OH and found that you have taken Feraheme.  I'm set to get two injections next week.  How has your experience been with it so far?


on 3/4/11 3:34 am, edited 3/4/11 3:38 am - Pueblo, CO
I just had my 2nd injection on Weds (posted about it here n-injection-today/ ), and I go back in 8 weeks to have my levels tested again.  They said it could take several weeks to kick in...I'm really hoping it's soon, I'm so tired!

I'll update when I get new labs.  Please let me know how your experience goes.  Good luck!

Edited to fix the link.

on 3/4/11 6:26 am - Davidson, NC
 Thx Scorpio!


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