Is there a new type of iron available?

[arachnaphob]

Hi,  I'm posting in this forum because one of my friends has colitis and becomes iron deficient and receives iron infusions.

This question, however, relates to me.  I have a severe iron deficiency anaemia with no stainable iron in my bone marrow.  The haematologists tried giving me iron tablets which resulted in burning skin and blisters.  To circumvent this reaction, I was given an iron infusion.  The first infusion caused some kind of emergency (I don't know what happened) I only remember feeling a bit odd and then waking up surrounded by doctors and nurses and having all kinds of things injected into my drip.

A second infusion was attempted and I was given premedication before the infusion started.  This seemed to work until about 2 hours into the infusion when my skin became red, started burning and then came up in blisters.

A third attempt was made.  I was admitted to the oncology ward, premeded and we tried again.  The same thing happened but I also developed kidney failure, which was mild and resolved completely. I also became confused which I was told later was due to the amount of steroids I needed to have.  I was told that I would have to have repeated blood transfusions as it was too dangerous to attempt any more iron infusions.

I have been having transfusions every 5 weeks for the last 2 years.  However, the haematologist wants to attempt another iron infusion.  I'm very worried about consenting to it.  He said that he is going to try and find some form of iron that is different to the iron I've already had.  He said that he'll also admit me to the ICU and premed and sedate me.

I was wondering if you know of some new form of parental iron (I had Ferrum H) that is safer.  Also would you be able to give me your opinion on whether it's better to try another iron infusion (the doctor said for monthly iron infusions) or to stay with the blood transfusions. I may need a stem cell transplant at some stage.

Thank you.

Chirley

[Ratnakar Kini, MD]

Hi,
First of all I would like to know whether you have been investigated for the underlying cause for iron deficincy.If already done what is the diagnosis that is mentioned?
How long you took oral iron supplements?
================================================================
The information provided is for patients’ education only and is not a medical advice. Always consult your personal physician for complete evaluation of your health problem.

- Ratnakar Kini M.D.

[arachnaphob]

Hi,

Thanks for the response.  I have had numerous investigations.  I was told today that I probably have 5q depletion MDS and small bowel telangectasia. I always have gastric and duodenal erosions on gastroscopy and pill cam showed duodenal erosions as well. I refused the double balloon push enteroscopy.  I also have Barretts oesophagus (no dysplasia) that oozes blood very slowly.  I have had a number of colon polyps removed (no dysplasia) and I have diverticulosis.

I tried 2 different types of iron tablets over the course of a couple of months, I tried to persevere with them but the skin burning and blisters were terrible.  My doctor took a biopsy which showed mast cells and indicated a lichenoid drug reaction.

I told the hematologist that I would have to be very brave to agree to another iron infusion, but he seemed to think that he could give me medication that would make it safe.  I don't want to be non compliant, but I'm scared.

Thank you.

Chirley

[arachnaphob]

Would you like me to try this as a new post?