Iron infusion

[Catherine]

When do you push for an iron infusion. We first started treating Sarah for low iron levels four years ago. During that time she developed anemia.

In 11/08

Ferritin 29 (15-165)
iron 6 (7-27)
transferrin 2.5 (2.5-3.8)
trans sat 9 (13-47)
No anemia

10/12
Ferritin 22
iron 3
trans 2.5
trans sat 5
HB 10.6 g/dL (11.5-16.5)

I know Sarah iron numbers are sometimes read as amenia of chronic disease which was case between August - December 2011, when we tried to rule out thalassaemia by doing a further trail of iron supplements. The numbers below are the result.
Iron 2
Tran 1.9
tran sat 4
ferritin 162

At that time in a 4 month period we increased ferritin from 30 - 162, and dropped hb from 10.6 to 9.3. We now this was result of untreated Crohn's.

Now the questions.
Is hemoglobin of 10.6 low enough to do iron influsion?
is ferritin of 22 low enough?
If we do the influsion how soon do you see an improvement?

I just want my girl as healthy as possible and anemia can not be healthy.

 

[Patricia56]

Have you discussed this with your doctor?

I personally feel iron infusions should be used more often with CDers so I will be in your court. But there's resistance to doing them here in the US and I'm not sure why.

I can make some educated guesses. The biggest one is that it costs a whole lot more to do an iron infusion than to rx OTC iron tabs.

Also it used to be that iron infusions had high rates of uncomfortable and/or dangerous side effects. But there are new formulations that are much better now.

Here's a link to a brief note about iron transfusions that specifically addresses IBD from Perth Haematology that might be useful to you.

http://www.perthhaematology.com.au/iron_infusion.htm

I hope you are able to get them to do a transfusion for the sake of her developing brain - if no other reason.

 

[izzi'smom]

We haven't ever had an infusion...just supplemented with mixed results. I'm no help-sorry!

 

[DustyKat]

Hey Catherine,

I don't know if you have seen this article before but if not it gives a very good narrative on iron deficiency anaemia and includes blood values that would be indicative of the need for supplementation.

https://www.mja.com.au/journal/2010/193/9/diagnosis-and-management-iron-deficiency-anaemia-clinical-update

Dusty. xxx

 

[Catherine]

Yes iron influsion was mentioned by gi. This was during a discussion on moving to remicade and doing them at the same time. Due possible fistula.

Sarah will not get approval for remicade index is too low.

Surgon advise was that area containing the possible fistula could be causing anemia and maybe reason for removing this section of small bowel in the future. Have follow up in 3 months.

Local public hospital will not do iron infusion in patients under 18 years. So would need to go privately cost minimum $400.

As we don't appear to be able to change treatment. I have lefted message for the gi that I woild like go ahead with iron infusion

 

[DustyKat]

Good luck Catherine. I hope all goes well and Sarah feels much better for it. :hug:

Dusty. xxx

 

[Catherine]

Thank you the articles.

I think she has ACD with combined with IDA. She has been tested beta thalassaemia which was negative and she had all the major alpha traits found in Australia excluded as well. Although they still suggesting partner testing.

 

[my little penguin]

Hugs ....
So hard when things are held up by non doctors ( remicade)
What about Mtx instead of 6-mp ? Sometimes that works ( not in DS's case) but sometimes ....

 

[DustyKat]

What is partner testing and do you think it should be done?

Dusty. xxx

 

[Sascot]

It always surprises me when non-medical people get to make such important decisions. With something like Remicade, do they not think the docs try everything they can not to use these drugs. If the docs say the child needs it, then how can they argue with that!
Hope you manage to get the iron infusion sorted.

 

[Catherine]

Dusty, she have to have a partner. Gosh she only 17 don't wish that on me. Before Sarah and partner in distance future were to have a family said partner should be tested for alpha thal because the DNA lab only tested for the common forms aphla thal. They have not ruled out alpha thal its just very unlikely Sarah has it.

I have come to terms with remicade not being an option. Remicade anyway is not very good no healing fistulas in the small bowel.

At this stage she has not failed aza, area of active Crohn's is much smaller. Hopefully the test will come back allowing to increase aza dose.

Sarah continue on have no symptoms, pred is down to 10mg. Her skin is a lot less pale. I I think looking at her, hemoglobin levels well have gone up.

So we are moving forward with iron influsion, hopefully.

 

[kimmidwife]

This is an interesting discussion. In women's health if a pregnant patient remained under a hgb of 10 we would consider Intravenous iron. If they stayed above ten we were ok with that as long as they continued taking the oral iron. When I was pregnant with my last child I had such severe hyperemesis the whole pregnancy that I ended up having two iron infusions. They were not bad and I felt so great after each one.