Iron infusion

[Ophelia1]

hello all - I have a question about iron infusions. By way of background info, mmy rheumatologist tells me I have lupus of the 'mild' type i.e. no cardiac, or kidney damage has yet been discovered, however, I do experience joint pain, raynauds, horrible fatigue and other symptoms. I have experienced iron deficiency for a number of years now and had an iron infusion in April 2021. At that time I had slight anaemia with HG of 11, low iron, transferrin saturation and ferritin. Two months ago I began to feel dreadful again, with physical and mental exhaustion, headaches, tinnitus and constantly feeling cold, plus a sore mouth. I asked to have an iron panel done and have been found to have low iron again - Iron: 6 and Transferrin Saturation: 10. My ferritin is just over 200 and my HG is 13.3. My ferritin levels increased from 40 to nearly 500 after the last infusion and has been slowly falling over the past year. I'm having another iron infusion in a few weeks. Following my last iron infusion, I really didn't improve for several months. I had thought I would feel much better within days. Has anybody else had iron infusion and how long did it take before you felt better afterwards?

[suzannah16]

I have had two lots of iron infusions. 2 bags I think it was 2 weeks apart each time and now i'm on iron tablets. I was told the first time I would never need another infusion or tablets, hah that was wrong. I can't say I felt any difference either time or with the tablets. Doesn't seem to have improved my iron levels or reduced my fatigue. The only time my iron levels improved was after being given blood during surgery. hope it works for you.

[Naladog]

I'll tell you my story too in case it helps, although it's very similar to yours Ophelia1

It's amazing to know how the same things happen to so many people, over and over again, and that there is no one to guide us.

As far as I can remember, I've had anaemia ever since I started having blood tests, it was rare to have a blood test without it. They sent you some iron pills and that was it, no further control or anything.

That's what they say is normal for being a woman. No, it's not normal to live with anaemia. It's not normal to drag yourself every day because you're tired until the day you have your next blood test and then you have to take pills again for a while.

I have had very low ferritin levels for two years, even though I have been taking iron tablets, first Iron Sulfate, then Iron Fumarate, requesting the tests myself after a long time of taking them, because otherwise they don't do any monitoring, and without much improvement.

Until finally, after requesting liquid iron many times to see if it would improve absorption, a GP decided to prescribe it for me, and that's when the levels have improved.

I have attached a photo of what I take in case it helps instead of transfusions. I take 20ml a day (10 in the morning and 10 at night). I will soon be asking my doctor for a follow-up test to see how my levels are doing. So much iron is not good either.

This is a matter of being aware of your symptoms and treatments because unfortunately I have found that if you are not on top of it, no one else is.

I am envious of all those who have had the good fortune to be cared for by good, vocational professionals who really care about their patients and not just the papers they publish.

Said that, I hope you have a lovely weekend. I hope that some of what I am saying will be of some use to you.

Hope you are all as well as you can be. 💜🦋💚

FerroEss 140mg/5ml Sugar free Oral Solution. Natural Chocolate and Peppermint Flavour.

[Ophelia1 in reply to Naladog]

Hi Naladog - Thanks for your response and I have taken the details of the iron photo you have posted. I have had the exact same experience as you in that I have to crack the whip continuously to make medics do their jobs properly. As far as I can see none of them give a damn about their patients. It's dispiriting and depressing, but now that I have become my own doctor I am receiving much better care 😐 .

[DRunnerchick]

Ophelia1,I have suffered from anemia off and on for nearly 40 years. Between being a long distance runner and having multiple AI diseases, I can’t seem to catch a break. I have had multiple iron infusions, with my most recent being 1000mg of ferrous dextrose in December when my Hgb was 10g/dL and my ferritin was 12ng/mL (pre-infusion).

If your Hgb is 13.3g/dL, ferritin is 200ng/ml currently (am I understanding that right?), those are normal levels. Why would you be getting another infusion with those levels? I know they are not the 500ng/ml ferritin that you had post infusion from before, but that is really abnormally high. Is there something I’m missing?

There are many reasons for the symptoms you raise. They could be related to autoimmune but with your lab results, I doubt they are due to iron deficient anemia. I have my infusions run by the hematology department. I have had to educate myself, and they have been keen on helping me do just that.

There are different kinds of anemia. IDA is one. People with lupus and other autoimmune diseases are also susceptible to anemia of chronic disease (ACD) which usually has different blood markers, (I.e. high ferritin etc ).

ncbi.nlm.nih.gov/pmc/articl...

I’m not a doctor, just offering info.✨💐

D🏃🏽‍♀️

[happytulip in reply to DRunnerchick]

Saturation level is 10 and should be at least 20%, might be the reason for the infusion?

[DRunnerchick in reply to happytulip]

That’s true, but usually that’s indicative of what direction your body is signaling. Usually an infusion is held until there are more drastic signs of depletion. Serum ferritin is widely recognized as an acute phase reactant and marker of acute or chronic inflammation. This is why I recommend a hematologist when there are more complex convergence of conditions at play. Sometimes these results are because of an acute exacerbation of a rheumatic disease. Sometimes, it is a flare up of the vasculitis that came with it and that neither is being manage well. (Just as examples)

My hematologist is head of the heme/onc @ my Uni hospital (he has been there since the halls were built 😉) and he was able to pick through my unusual results right away.

No disease reads a book or manual. They don’t follow rules. There can be generalizations but, if you’ve seen one case, you’ve seen ONE case. It takes continuous learning, experience, and dedication.