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Iron Infusions: Easy or Not? Why?

(deactivated member)
on 2/28/11 11:02 pm - San Jose, CA
I have seen some VERY contradictory posts here about how difficult/painful/troublesome iron infusions are.  I'd like to see what people's experiences are with them, in one location, because some of what I have heard surprises me.

I find the infusions to be very easy, very convenient and very effective to get my iron-related numbers up.  So far, they have lasted 18 months at a time, and compared to the hassle of taking oral iron (stomach and gut upset; lack of effectiveness; timing taking it away from calcium; cost), I think getting infusions is a great solution to the problem of getting iron levels in range.

However, I have seen some VERY different experiences here, including numerous people who have to get treated with benadryl (and thus have to have a ride to and from the infusion, lose most of a day due to being sleepy, and take up the time of another person), and sometimes steroids, and I wonder why that is?

Background: My iron/hemoglobin/hematocrit/ferritin levels were OK, unsupplemented (except what was in my prenatal) for the first 5 years after my DS.  In retrospect, I was always on the low end, and over 5 years they slowly drifted down.  Finally, based on my low ferritin level (18) at my 5 year checkup, my surgeon recommended supplementing with Multigen.

OMFG.  Not constipation in the classic sense, but compared to the easy soft DS poops and with my IBS, it was very uncomfortable.  And didn't do squat to increase my ferritin - in fact, it went down further.

So I switched to Proferrin ES.  MUCH easier on the stomach and guts.  But didn't do squat to my ferritin level.

Finally, after my 6 year checkup, with my ferritin down to 12 and my hemoglobin and hematocrit dancing on either side of the lowest numbers, and facing three plastic surgeries (although I only got one), I got a referral to a hematologist who works with DS and RNY patients.

I was scheduled for three Venofer infusions.  The first one was done slowly, to make sure I didn't have an allergic reaction (these usually manifest with a drop in blood pressure).  They checked me carefully every few minutes, over a 2 hour slow infusion.  No problem.  So the next two infusions were done in one hour - no problem.  My ferritin went up to 79.  The appointments take about an hour, and for me, the only issue is that the hematologist is 40 miles away - but I won't even try to switch, because he knows my surgeon and is cooperative in prescribing infusions before things get too low.

At my 7 year check up, my ferritin had dropped somewhat (56), but was still OK.  Then I had my levels tested again in December, and ferritin had dropped to 23.  Since the hematologist "gets" WLS patients, he scheduled me for 3 more infusions, even though I'm still in the low normal range.  I just had the second infusion today.

I was chatting with the nurse who does the infusions today, and I asked her how common it was to have problems with them - I've read SO many reports of people having to have benadryl or other meds in order to tolerate them, or other issues.  And to me, the infusions are SO easy, so convenient, that it would suck to have problems taking them instead of iron pills.  To my surprise, she said that over the YEARS she has been giving iron infusions, almost always Venofer (though occasionally Ferrlecit, if for some reason the Venofer is contraindicated, although it is more common to have issues with it), she has only run into an iron infusion allergy FIVE TIMES.

So, I was telling her what I had read here, and she was surprised.  She guessed that perhaps some hematologists have simply made it a practice doing the antihistamine treatments, without bothering to find out whether the person is actually allergic to the infusion.  Or used Ferrlecit when Venofer might be better, or worse, using iron dextran, which has a much higher risk of allergic reactions.  In other words, making it more difficult than necessary.  See http://health.nytimes.com/health/guides/disease/anemia/treat ment.html

So, I wanted to ask, if you have had iron infusions:

1)  What kind (product) did you have?
2)  Did you need to have benadryl, steroids or some other co-treatment?
3)  Did you have any problems with getting your infusion?
4)  How often do you have to have them?  E.g., for me, 3 infusions, a week apart, 18 months between rounds.
5)  Is there any reason you don't prefer to have infusions rather than take iron pills?
6)  If you pay for them, how much do they cost you?

I sure hope the numbers are not as bad as the impression I've gotten has led me to believe.  I also hope that people are being given the most effective and safest version of iron infusions, rather than the cheapest.
Amber L.
on 3/1/11 3:41 am - Sweden
I am interested in this, too. Taking iron pills in the past has made me very nauseous and queasy. It's good to know this from the start.
Pretty pretty please, don't you ever ever feel like you're less than f*ckin' perfect.
Pink!
How SHOCKING!  Amber's BLOGGING!
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REDRN
on 3/1/11 4:23 am
RNY on 07/07/10 with
 I use to give these infusions. There is a high risk of allergic reaction, so they have to be given slowly= reason for Benadryl. First infusion takes a long time, It is usually given super slow. They Don't work for everyone, re have no effect on iron levels for some people post transfusion. They are usually given in a series-mulitple infusions over weeks, and then they will eval your progress.
(deactivated member)
on 3/1/11 7:57 am - San Jose, CA
When you say there is a high risk of allergic reaction, is that true no matter whether it is iron dextrose (I think that is the one that I read had the highest risk), Ferrlecit or Venofer (the latter two having a much lower risk)?

That's one of the things I'm trying to understand - the infusion nurse said with Venofer the reactions are VERY rare, so after the first infusion being given very slowly, without any medication, and if that works, the rest get pumped in much faster (1 hour total for two 50 ml syringes for me).  I don't get medicated, and an hour later, I'm on my way to go on with my day.

I would imagine that the iron infusions wouldn't help if you don't have the red blood cells being manufactured to load up with iron - hence, if you are so low on RBCs that you need a TRANSFUSION (which contains RBCs that already have iron in them), you don't have enough fresh RBCs being made by your own body to load up with iron administered by INFUSION.
seattledeb
on 3/1/11 5:32 am
RNY on 12/22/08 with
I've had many infusions. I have anemia from my kidney disease. I've never had a reaction. They do take time. They were particularly nervous when I was pregnant and getting IV iron. The baby had to be monitored during the infusion which was kinda cool because I liked listening to it.
I've never had a pre med benadryl need.
I take bariatric advantage iron-the 61mg(62?) I tolerate it well and haven't need an IV infusion in over 2 years.
    
duncans
on 3/1/11 5:51 am
Hi Diana,
 Ferritin 7
venofer iv infusions over 1 hr, x 5 days in a row
no benadryl, doc said Venofer has had very few allergic reactions, no need to pre-med (now that's just what he said, in his experience)

I had terrible pain along the vessels used. Thrombophlebitis lasted for 2 months after. So painful, I avoided wearing gloves at work (ICU RN, really need the gloves!) as they put pressure / pain on those tender veins. Lost 4/5 of the viens used. Hard as rocks now and being "absorbed"
 I am hoping that I will pick up the Proferrin ES thru my gut. I had just started it when I went to see my hemotologist. He said not to bother, that he doubted I'd have any uptake. But, I have it and am going to try it, in hopes of avoiding painful arms.
next time I use Venofer, I am going to ask them to highly dilute the stuff and use a vessel with greater flow.
I have only had one series of infusions, this was in Nov / Dec. , so don't know yet as to how my level is holding up.
6 wks post infusion: Ferritin 97
  I pay 100% for the Proferrin ES, expensive.  Venofer is covered by insurance, have a copay for office visit: $25.00 I'd still rather pay and avoid the pain--hinders my work too much.

Susan
(deactivated member)
on 3/1/11 8:01 am - San Jose, CA
Wow - that's awful.  My infusions are administered with a butterfly needle into the back of my hand.  It kind of aches for a couple of hours after the infusion is over, like a bad bruise, but that's it.

I am given 2 - 50 ml infusions each time.  Did they give it to you in a more concentrated form than that?
duncans
on 3/1/11 9:06 pm
(Just got off work, sorry for the late reply)

Venofer, iron sucrose, was in 200 mls, delivered piggybacked into D5 . I asked the nurses to increase the rate of the D5 each day after the first day, by day #5, it was running at 200-250 ml/he chasing in the Venofer which was running at 200 / hr. Still had problems.
The doc said that just some are sensitive to it, but that he choose to use Venofer, as it overall causes the least # of anaphylactic reactions.

You make me jealous. I want your veins.

(deactivated member)
on 3/1/11 9:19 pm - San Jose, CA
I wonder if, in your case, it makes sense to try the Ferrlecit next time.

I barely have a bruise today, and it doesn't hurt at all.
greysmom
on 3/1/11 7:00 am
I had iron infusions prior to my bypass surgery for several years.  I did the all day (6 hours) drip that was just the one treatment.  I've had friends that had the 1 hour, several day version but I like the one-day treatment better for my schedule.  I think that may be the doctor's preference but don't really know what the difference may be.

For me, they would do a "test" bag after a shot of benedryl, then the big bag.  After the first time they didn't do the test bag but I always had benedryl.  I did have to have someone drive me home, but it also made me sleep during the treatment so it help with the boredom of sitting at the Cancer Center for almost 8 hours.  I had to have them because my body was not absorbing the iron from pills.  They finally figured out my heavy periods were causing the low iron and now that I take BC pills, my levels are pretty good.

I average about every 8 months for the one treatment.  I never had any complications other than the day of sleepiness.  My insurance covered it so all I had was a co-pay.
        
HW 401/SDW 385/CW 247
(deactivated member)
on 3/1/11 8:03 am - San Jose, CA
Do you know what kind of infusion you get?  I imagine if you get it all in one day, then sleeping through it isn't a bad idea, even if it isn't necessary to treat the potential for allergic reaction!
Zee Starrlite
on 3/1/11 7:44 am, edited 3/1/11 7:46 am
VSG on 06/06/11 with
So, I wanted to ask, if you have had iron infusions:

1)  What kind (product) did you have?
Venofer . . . for several years
2)  Did you need to have benadryl, steroids or some other co-treatment?
No co-treatments though my body does act weird when it has higher iron levels.  My issues with iron were present pre-op and now, non-op (Band removal) and are not from any of the typical reasons one would have low-iron.  Recently I've been diagnosed with an autoimmune disease - Infusions (higher iron) seemed to trigger my body to have  "flare-ups".  A couple of days prior to my band removal, my ferritin was 5.  That was a new low as normal low is 7.
3)  Did you have any problems with getting your infusion?
No problem getting my infusions My internists of 15+ years does them himself.  We do slow I.V. injection - so 5mins and no drip.  He has been amazingly supportive.
4)  How often do you have to have them?  E.g., for me, 3 infusions, a week apart, 18 months between rounds.
I have infusions as needed - sometimes a full round of tx, sometimes if I just happen to go to my docs office or if I get bloodwork back and I read low.  In the last 3yrs, I've used 16 vials  ****ep my own and used 2 boxes of 8)
5)  Is there any reason you don't prefer to have infusions rather than take iron pills?  After trying everything for most my adult life, the infusions are the only thing that really worked.  The liquid was simply horrible, shots (is it called intermuscular?) were just a pain and really messy.  Every pill, chewable or not seemed to repeat all day.  I just could not tolerate so I wasn't consistant with the pills.  I am now using carbonyl, a grape chewable iron I bought a couple of years back, & vitaminC 2x's daily - seems now that I am unbanded I have no issues taking - Maybe my digestion got better because pre-op I just could not tolerate.

6)  If you pay for them, how much do they cost you?  I had HealthNet PPO until 12/31/10 and paid a $35- copay and $30 doc visit co-pays.  The neighborhood pharmacy  I went to charges $500- for the 8 vial prescription.  I now have Oxford Freedom and have not really used them for prescriptions or anything.  My doc visits are $20 and $30 for a specialist.


3/30/2005 Lap Band installed  12/20/2010  Lap Band REMOVED  
6/6/2011 Vertical SLEEVE Gastrectomy

luvinmyfour
on 3/1/11 8:03 am - haverhill, MA
i have had iron infusions with no trouble at all......i went biweekly and was there for about 3 hours it was painless just an iv pinch no need for anything no allergic reaction and after my 2nd or 3rd treatment i felt like a new person i went from falling asleep at work and after work and feeling just plain ole horrible.  I think the hardest part was seeing all of the people fighting cancer sitting there getting treatments with a smile on there face and having the fight of their live made me say to myself how my low iron was nothing compared to what they were fighting good luck to you
@-(------ Michelle



  
(deactivated member)
on 3/1/11 8:08 am - San Jose, CA

Oh yes!  I am in the office getting iron, and everyone else in there is getting chemo.  It certainly puts the hassle of driving 40 miles to get there in perspective, and makes me feel VERY grateful!

Pumpkin X .
on 3/1/11 8:10 am - Califreakinfornia , CA
HIJACK.....

I'm sorry I didn't call when I was supposed to. I suck and I have no excuse. I just completely forgot to.
Renee2007
on 3/1/11 8:10 am - Central, FL
1)  What kind (product) did you have? InFed

2)  Did you need to have benadryl, steroids or some other co-treatment? Doc adds it as standard procedure

3)  Did you have any problems with getting your infusion? None

4)  How often do you have to have them?  E.g., for me, 3 infusions, a week apart, 18 months between rounds. I just get one infusion and then get labs redrawn in 1 month intervals. My iron stores never get very high. I repeat an infusion about every 6 months. After an infusion my ferritin has never gone above 70. Levels tend to drop back down quickly.

5)  Is there any reason you don't prefer to have infusions rather than take iron pills? I don't mind the infusions at all. I just wish that i felt a noticable difference after having one but I don't.

6)  If you pay for them, how much do they cost you? Insurance covers mine.

I am considering trying the Proferrin ES just to see if I can absorb some of it. My hematologist tells me not to even bother. I am pre-menopausal and I'm also considering having an edometrial ablation to try and cease my periods.

Renee
 My DS   
SW/263  CW/136 GW/150



(deactivated member)
on 3/1/11 8:25 am - San Jose, CA

InFed is the least well tolerated iron dextran version.  You could ask why not try the Venofer, which doesn't require co-treatment with benadryl.  And maybe ask whether getting more than one infusion at a time might up your ferritin better and for longer?

Renee2007
on 3/1/11 8:40 am - Central, FL
I am getting one tomorrow and when I go back for my re-draw my hematologist will be relocated back to New York. I will be getting a new Doc and I'm going to ask about changing things up.

Renee
 My DS   
SW/263  CW/136 GW/150



rhondasueg
on 1/21/13 10:02 am

My hem is a 8 they say my serum is a 4. I need he ablaiton as well.I'm supposed o have my first venorfer iv done tomorrow. But , I have SVT. I'm scared o have the benadryl, it could make my heart race, and it might  get stuck on the fast beat. rhondasue

Kathleen W.
on 3/1/11 9:09 am - Lancaster, PA
I have the opposite problem.  I went to my doctors and my iron levels are through the roof.  It's more than double what it should be.  Now,  I have to go a hemotologist and get it check out.  My life just gets better and better.  NOT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
SW 327
GW 150
CW 126