Do you get by without iron infusions?

[Eztli]

Ive been reading a lot and some people seem to be fine just taking lots of iron supplements, and other people seem to have to get iron infusions.

I am getting an iron infusion prior to surgery, so I know my PCP is on the same page and it hopefully will not be an issue to get them after surgery etc.

But i am curious, does anyone have an idea of the percentage of people who need iron infusions vs those who don't? Or perhaps, if you used to need iron infusions but no longer do, what are you doing differently?

 

[Munchkin]

Never have needed them. No issues at all.

 

[southernlady]

I was 3 1/2 years out when I needed one. I get tested 2 times a year right now and so far have not needed any more and I stopped taking iron. Hubby on the other hand is as far out as I am and he's never needed iron infusions. In fact, he was taking iron only once a week and still is high normal.

 

[KathrynK]

I'm at the other end. In 12 years I have had three series of iron infusions and will start the 4th tomorrow (3 infusions set up this month). I have been taking Feosol, but the hematologist told me yesterday to just forget it, since it was clear I wasn't absorbing it. She actually knew the DS and said she has several DS patients who need regular or occasional infusions. My hemoglobin is 10.4, normal for my age is 11.7-13.8. I have had 3 surgeries during those 12 years for non DS related problems, so I am the exception rather than the rule in experiencing bleeding.

The DS pioneer, Dr. Hess did a 10 year evaluation of DS patients, and reported this: "When we evaluate our entire series of 440 patients we have 40 patients (9%) requiring iron in some form or another."

So, there is only a 1 in 10 chance, meaning you probably won't need infusions.

 

[DianaCox]

I need them, but not that often ... didn't need them until about 6 years out, needed a second one 18 months later, now it seems about every three years. Not a big deal.

 

[aaa]

No iron infusions here. I take iron and vitamin c. Twice a day on an empty stomach.

 

[k9ophile]

I don't take any supplemental iron at all. We're all different in our needs

 

[hilary1617]

I take infusions, but it is in large part due to not tolerating oral iron (and therefore I choose not to take iron pills). I also have bleeding issues unrelated to DS which causes it to be a bit of a losing battle to try to not be anemic.

I can tell an infusion is needed and head to the hematologist when my palms lose their color and the inside of my bottom eyelids turn light beige instead of pink. A few days after an infusion I always feel like a brand new woman.

It will be great for healing to have an infusion before surgery. Depending on your labs, you might want to ask for a B-12 shot at the same time!

 

[-Flo-]

I get infusions. For me the hematologist said to just stop taking the iron pills, you don't absorb them. It has made my vitamine regime much easier, so I'm happy with it.

 

[Petunia]

I'm 11 years out and have had 2 infusions, so every 5 years so far. Even before the DS I was borderline low on iron, I take one Proferrin daily and no additional iron. My body doesn't tolerate the iron pills very well.

 

[KathrynK]

Does everyone get 3 infusions in a cluster or is it just me? I'm going in for #2 of three this week;#3 next week. Everything tastes metallic to me this time. Since I am a veteran of infusions, at least I get to skip the Benadryl. Usually get a burst in energy when the series is over, so that's something to look forward to.

 

[Spiky Bugger]

I don't think of it as having to get iron infusions...to me, it's kind of an easy way to avoid all those pills and timing them relative to other pills, etc.

Maybe every six to nine months, I need infusions.

ETA...I was "borderline" before the DS.

 

[Spiky Bugger]

Does everyone get 3 infusions in a cluster or is it just me? I'm going in for #2 of three this week;#3 next week. Everything tastes metallic to me this time. Since I am a veteran of infusions, at least I get to skip the Benadryl. Usually get a burst in energy when the series is over, so that's something to look forward to.

There are different kinds of iron infusions in addition to different ways of administering it. I knew someone who did an entire day of infusions...a huge dose. I used to do the series of three, but my hematologist offered me a one-dose product and it was fine.

 

[hilary1617]

@KathrynK, my infusions are administered in pairs, a week apart. The fereme infusion I get itself takes about 15 minutes, but then they have me wait around for another half an hour to be sure there is no allergic reaction.

 

[Spiky Bugger]

I get infusions. For me the hematologist said to just stop taking the iron pills, you don't absorb them. It has made my vitamine regime much easier, so I'm happy with it.

That's what I was told...or asked...as in, "what makes you think that iron in a pill will be absorbed by your gut any better than iron in food? Stop spinning your wheels. Make an appointment to sit down and roll up your sleeve."