IV Iron infusion Experience

[Sashabear]

Hi,
I’m wondering if anyone here that has had an IV iron infusion can give me some feedback on their experience. Did you feel better, worse or showed no sign of improvement after? What was the dosage and the duration of infusion rate? And if you had a reaction during or after the infusion, what were your symptoms? I’m feeling a little nervous as I’ve been hearing that some people didn’t feel great after receiving but these were not people with a chronic illness. Any input would be greatly appreciated! Thanks.

 

[MEPatient345]

I have not, but am currently trying to increase my ferritin from 22 with iron supplements. I decided to do this for 3 months or so bc have also heard of people having dangerously low phosphorus from Injectofer brand, or low blood pressure, or anaphylaxis. I am taking Active Iron brand supplements one dose of 3 tablets (UK dosing is 15mg each) every other day w Vitamin C, away from food and caffeine. If it doesn’t get me up close to 100 in 6 months I would think about infusions.

If you are on Facebook there is a low ferritin group, and an anaemia group which are helpful w info about injections. Many of them swear by the infusions, even people who had anaphylactic episodes. They just now pre-medicate. But def for us ME patients, we should be careful.

 

[Sashabear]

I have not, but am currently trying to increase my ferritin from 22 with iron supplements. I decided to do this for 3 months or so bc have also heard of people having dangerously low phosphorus from Injectofer brand, or low blood pressure, or anaphylaxis. I am taking Active Iron brand supplements one dose of 3 tablets (UK dosing is 15mg each) every other day w Vitamin C, away from food and caffeine. If it doesn’t get me up close to 100 in 6 months I would think about infusions.

If you are on Facebook there is a low ferritin group, and an anaemia group which are helpful w info about injections. Many of them swear by the infusions, even people who had anaphylactic episodes. They just now pre-medicate. But def for us ME patients, we should be careful.

Thank you for the reply and I hope that you will show some improvement with supplements. I’ve been taking iron supplements for about six years now and aside from keeping my iron stable at around 20 they really don’t do anything else. I’m not on Facebook but I’ve heard that people take benadryl beforehand. Do you know if there is anything else that is taken or is this kind of the gold standard?

 

[Markus83]

I’ve been taking iron supplements for about six years now and aside from keeping my iron stable at around 20 they really don’t do anything else.

If your low iron store is caused by inflammation, you won't absorb iron orally. You can fix this by taking lactoferrine either with ot without your iron supplement.

 

[MEPatient345]

aside from keeping my iron stable at around 20 they really don’t do anything else. I’m not on Facebook but I’ve heard that people take benadryl beforehand. Do you know if there is anything else that is taken or is this kind of the gold standard?

I’ll let you know if mine work any better. I’m trying to take them in a v deliberate way that I hope they will be absorbed best. There is literature showing that to take alternate days, and in a single dose is best. (and empty stomach, no caffeine, Vit C) https://www.thelancet.com/journals/lanhae/article/PIIS2352-3026(17)30182-5/fulltext

I think Benadryl is it but that won’t help obv w the low phosphorus problem which would need prescription phosphorus I think afterward. Another ME girl I spoke with lost her ability to tolerate foods after an infusion, can only eat 4 foods now.

 

[MEPatient345]

Here is a good study on iron deficiency. It’s amazing to me how iron and ferritin levels are not mentioned to us. Chronically ill people may need ferritin or close to 100 or more. I was always told mine was normal. Also, it may be necessary to have hemoglobin higher than what is considered “normal” too for many women to feel ok. I still don’t know yet if upping my ferritin and hemoglobin numbers will help me. Here’s hoping.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/

 

[Sashabear]

If your low iron store is caused by inflammation, you won't absorb iron orally. You can fix this by taking lactoferrine either with ot without your iron supplement.

Is there a way to tell if inflammation is a problem? I’ve always felt that I have some sort of inflammation but I’ve had my ESR and CRP tested and they show normal. I will look into lactoferrin, thanks for the suggestion!

 

[Sashabear]

Here is a good study on iron deficiency. It’s amazing to me how iron and ferritin levels are not mentioned to us. Chronically ill people may need ferritin or close to 100 or more. I was always told mine was normal. Also, it may be necessary to have hemoglobin higher than what is considered “normal” too for many women to feel ok. I still don’t know yet if upping my ferritin and hemoglobin numbers will help me. Here’s hoping.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/

Medical professionals are always lumping people into categories and saying that if you are in a certain range, it’s all good. Obviously not the case with people with CFS. So I’ve been told frequently that I’m “normal” even though symptomatically I’m clearly not. Anyways, I hope that you see some results both on paper and in how you feel with the iron. Please let me know how it goes!

 

[Learner1]

I have the opposite problem - heriditary hemochromatosis, iron overload, and have to get blood taken our of me every couple of months to get rid of excess iron.

My doctor said not to go below a ferritin of 60 or mitochondria won't work properly. The target the hematologist set was to keep it between 60 and 100.

Regarding the iron IVs, there are different products that can be used. The older ones were more dangerous for some reason, who h is why many docs shy away from doing iron IVs. For severe anemia, however, that wont budge with oral supplementation, the clinics I go to typically do a series of 3-5 IVs with one of the newer products, which is typically covered by insurance.

 

[Markus83]

Is there a way to tell if inflammation is a problem?

Other causes have to be excluded like blood loss by hypermenorrhoea or occult blood loss in the GI tract (gastroscopy and iFOBT-test), inflammatory bowel diseases like celiac disease, Crohn's, colitis ulcerosa; vegetarian diet; parasitosis. If this is all negative, then an inflammatory cause of the iron deficiency is likely especially in CFS patients.

Iron feeds on bugs like bacteria. So if you have a chronic infection iron will probably worsen the situation. So you have to be careful as many so called CFS-patients probably have some underlying chronic infection as root cause for their CFS.

 

[Learner1]

Iron feeds on bugs like bacteria.

Do you mean the bugs feed on iron?

https://www.sciencedirect.com/science/article/abs/pii/S1438422108000313

 

[Markus83]

Do you mean the bugs feed on iron?

Yes.

 

[katarina]

Following, I have low iron, low ferritin and oral supplements for YEARS did nothing for my numbers or symptoms, my doctor wanted me to do iron infusions but not until I’m more stable since I am bedbound and can’t come into the office regularly. I think it quite obviously has to do with the fact that I can’t absorb nutrients properly. The oral iron also gave me bad side effects. It’s one smaller puzzle piece to the larger puzzle of my health.

 

[Markus83]

Try lactoferrin together with a lower dose of iron.