On February 28, 2011 at 11:02 PM Pacific Time, DianaCox wrote:
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.