Iron Infusion for ACD (Anemia of Chronic Disease)

[Infinte]

Hi All, First time posting here though have been watching & reading threads for the past 3 months. Parent of 12 yr old diagnosed with Crohn's. Our hematologist is recommending Iron Infusion as his Iron levels are not going up...Hovering at around 9.2 (Hemoglobin) for the past 3&1/2 months. Anyone gone through this procedure? Does it help?.......literature out their doesn't suggest any significant improvement for ACD patients until the underlying condition goes away. Seems Iron infusion help for IDA (Iron deficiency Anemia) patients. Note that his Ferritin levels are in the normal range....Regards.

 

[Maya142]

My daughter has had iron infusions but only when her Ferritin was very low. When it was 3, she had a series of 4 or 5 infusions. It recently dropped from 44 to 7 in a month and she was given one infusion and we are going to follow up with a hematologist to see if she needs more. They really helped with fatigue and actually hair loss - she had been losing a LOT of hair and we had been blaming Methotrexate, but it turned out she was just iron deficient.
I don't know if iron infusions would help if your child's Ferritin is normal - I just honestly don't know. His hemoglobin is definitely low though. Could you consult a pediatric hematologist before you go ahead? I will say that my daughter has had 3 different types of iron infusions. The first two caused no side effects, but the third, which was a very short infusion (only 10 minutes) caused GI side effects for a week - we were really surprised because in the past, she had tolerated iron infusions with no issues. But this last time, the one infusion caused nausea and constipation and she kept saying her stomach didn't feel good for about a week. I don't know what that specific iron infusion was though - what kind of iron. Generally I associate those side effects with oral iron. But based on our experience, it seems like infusions can cause side effects too. So I'd make sure he really needs one before doing one (or more).
I'm going to tag some other parents to see if they know - @my little penguin @crohnsinct @pdx

 

[pdx]

All I can tell you is that iron is very confusing! Last time my daughter's iron was checked, her red blood count, hemoglobin, hematocrit, and iron saturation were all low. Something called just "iron" was also low, but I don't know if that's ferritin? She has also been feeling really fatigued for about 6 months. We tried oral iron sulfate supplements for a while, but those gave her stomachaches. We switched then to oral iron gluconate, but that wasn't increasing her levels very quickly, so her doctor prescribed an infusion of iron dextran. She had an immediate allergic reaction to that (airway tightening, low blood pressure and hives), so that didn't work. Finally, she just tried an iron sucrose infusion last week, and that went fine. Unfortunately that one has to be infused over 3 visits, so we've got two more to go over the next few weeks and then I can tell you if they helped!

She has been flaring a bit, so her low iron might be an absorption issue. She also has really heavy periods too, though, so that might be the main issue for her.

 

[Pilgrim]

My daughter has low normal hemoglobin but very low ferritin- test result was 5. She has been exhausted for months. She is recently taking a liquid iron supplement called Palafer but it makes her feel sick. I would like to push for an infusion but don't know how...what kind....so I am following your thread for information/experience. I hope you get the answers you need.

 

[pdx]

Pilgrim, the two formulations of oral iron that haven't caused stomach issues for my daughter are iron gluconate and iron bisglycinate, but they don't provide as much iron per dose as other types. (I don't know if they are actually easier on the system or if they just are typically given in lower doses, and thus don't cause as many issues.)

 

[Pilgrim]

@pdx Thank you! I read that if she takes this supplement with a LOT of water it will help side effects. We're trying that first to see how it goes. It won't hurt her to have extra water either.

 

[Infinte]

@Pilgrim. he is scheduled to get his first does of Venofer® (iron sucrose) tomorrow with additional two sessions later in the coming weeks. Will keep you posted on the progress.

 

[Maya142]

My daughter has low normal hemoglobin but very low ferritin- test result was 5. She has been exhausted for months. She is recently taking a liquid iron supplement called Palafer but it makes her feel sick. I would like to push for an infusion but don't know how...what kind....so I am following your thread for information/experience. I hope you get the answers you need.

@Pilgrim I would honestly tell the doctor she is feeling sick from the oral iron. That is what happened the first time M need iron infusions - she got nauseous, lost weight, had belly pain and her Ferritin continued to fall on oral iron (down to 3). So she was then given 4 or 5 iron infusions over 4 or 5 weeks (1 per week - this was years ago, so I can't remember how many!). But she got Venofer - I didn't remember till @Infinte mentioned the name, but that jogged my memory, and that's what she had. She had absolutely no side effects and she felt better pretty quickly - definitely by 2 weeks. She had really been struggling with fatigue - dragging herself to school and back. It made a BIG difference.

 

[Pilgrim]

@Maya142 Thank you! We have a telehealth with GI next week and I will ask him for a retest date and a plan B for infusions. We upped her fluid intake with the iron which seems to help with tolerance so I am willing to give it a month. I want to know before school starts.

 

[my little penguin]

The thing with iron pills it takes many months to see any increase in ferritin
Ds was barely low at a 9 I think (almost 10 years ago)
Gi told us plan fir six months to move the number at all
Iron made him sick
We tried all versions
That said once his disease was under very good control (even though at the time of low ferritin we thought it was )
His ferritin jumped easily on its own
No infusion needed

 

[Pilgrim]

That is really good to know MLP, because I was also told today they are moving her dosing to every 4 weeks on Stelara. Her levels were very low at 1.5 with still 10 days before dosing. I am hoping the med adjustment is really going to help.

 

[my little penguin]

Is she still on mtx ?
Stelara at 4 weeks made a huge difference for my kiddo versus 8 weeks
At every 8 weeks I was ready to jumped to another med
It felt useless
He has been on every 4 since 2018
And all clear on everything until they recently “tried” every 6 weeks

He does use mtx as well

 

[Pilgrim]

That's funny because I asked about every 6 weeks and was told no. I am ready to see her move towards remission - happy to try 4 week interval. Do you remember how long it took for you to see an improvement after the dose interval change?

No MTX, we dropped it to try Stelara as monotherapy.

 

[my little penguin]

I would say 2-3 months
His was complicated because he had anaphylaxis to another biologic he takes for an auto inflammatory condition a month before he started every 4 weeks of Stelara .
So he wasn’t getting his other med until after 3 months and it was a new med etc

But he definitely saw less crohns /arthritis stuff after 2-3 shots at 4 weeks

 

[Infinte]

Anyone having cramp issues with Iron tablets should try "Iron-up" which is in liquid form. Can mix it with little bit of Orange juice especially for kids making it easier for them to take in.
@Pilgrim he got Venofer mixed with Saline in 1:1.5 ratio. No side effects so far...Knock on wood !!

 

[Catherine]

If he has both IDA and ACD and you can have both. Giving iron should cause the ferritin level to rise followed by the hemoglobin.

What is the ferritin level?

 

[Infinte]

@Catherine His Ferritin level was 94ng/ml. Normal range is 24-336ng/ml, hence said it was in normal range. Anyways, we did blood work before starting the 3rd infusion today. Ferritin came back 233 ng/ml.
How long does it take (after all 3 infusion sessions) for Hemoglobin to go up?