My question is admittedly uninformed. You say your body "doesn't hold" iron sucrose when administered via infusion. How long does it hold? Is it absorbed for a short time then discharged? I wonder whether it holds long enough to support recombinant erythropoetin therapy. Perhaps repeated infusion of iron over the course of a week supporting EPO therapy would have an effect. Perhaps your physicians would be willing to try a test. Of course they would need to add Vitamin B12, Folic Acid and Vitamin C in the proper doses as part of the support.

Just a thought.

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Mr. Jan B. Wade
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Along the same thought line as Jan-could your body's inability to hold on to the iron that you are receiving actually be that your body is using it up to produce more red blood cells? A quick way of calculating how much iron you need to receive is 200 mg per 1 point of Hemoglobin increase, plus an additional 500 mg to replenish iron stores. If your hemoglobin is 8 and the doctor wants you at 12, then you need 1300 mg of iron to get you there. If you are only getting an infusion every couple of weeks, you may not be getting enough iron to adequately support RBC production. Kind of like going on a 500 mile trip, and only filling the gas tank half way. You didn't mention what type of physicians have been treating you. Hopefully, you are seeing a Hematologist. They would be the best medical specialist to get to the root cause of your problem.

in response, I failed to mention I have hereditary co-pro porphyria. My mom was 57 percent deficient in the enzyme. I am about 20 percent. The concern with epo. is triggering the porphyria. I tolerate 100 mg iron at a time The infusions require steroids and tagamet and tylenol. I have seizures from to much iron at a time. I was getting an infusion a week, now its about every 2 weeks. I have a blood doctor and a gi doctor. I went t ohsu once to a blood doctor. Still no answers.I am now at 12 hgb. and 36 for my crit. I will loose this in about 3 weeks. I loose about 1 point a week.Thank you for any suggestions you have.Doesnt the body recycle iron molecule? .Mine does not do that? thanks for any input sherry

Blood transfusions are not indicated in the treatment of the porphyrias. Rather, a drug called panhematin is the preferred treatment. Panhematin is an iron-containing enzyme that inhibits the production of the toxic porphyrins. Although it is not blood it is derived from processed red blood cells, and so may be classified as a fraction. The use of this product to treat your disease, therefore, may or may not sit comfortably with your religious conscience. This drug should only be used by physicians experienced in the management of porphyrias in hospitals where the recommended clinical and laboratory diagnostic and monitoring techniques are available.

See Panhematin (Hemin) drug description - FDA approved labeling for prescription drugs and medications at RxList

I thought there was a synthetic heme.Is it only available in other countries? Is it common for porphyria to cause chronic iron deficient anemia. I do not know if there is a connection between porphyria and anemia. Where I live central oregon no one really knows much about co-pro porphyria. I have a second enzyme shortage of varigate also. When I have attacks I go to the hospitol and they give me glucose infusions. It truly helps. Not one of my doctors knows much about the porphyrias. Is there a hospitol or dr. that does on the west coast? Thank you so much for your time and knowledge. Sherry

I definitely am not a porphyria expert, and after reading your response, I decided to do a little self educating and found a great resource site on the internet at Welcome to the American Porphyria Foundation. The site also has a listing of Specialist in the field. There were a couple of doctors listed in California, but unfortunately none in Oregon. There is one physician, Karl Anderson at the University of Texas/Galveston who will do telemedicine consultations. The website explains how to go about getting such a consult set up. Hope this information is of help. I certainly learned alot about the condition, testing and treatment.

A recombinant human albumin incorporating a synthetic heme was developed about 4 years ago by researchers at a Japanese University. I have been unable to discover if it has been released onto the market or even if it has FDA approval. Here are a couple of links for you.

Oxygen Infusion Project (Albumin-Heme)

Genetic Engineering of the Heme Pocket in Human Serum Albumin: Modulation of O2 Binding of Iron Protoporphyrin IX by Variation of Distal Amino Acids

And here is a contact:

Research Institute for Science and Engineering,
Waseda University
3-4-1 Okubo, Shinjuku-ku, Tokyo 169-8555, Japan
TEL: FAX: +81-3-3205-4740
E-mail: eishun@waseda.jp

I wish you success in finding a treatment that will work for you.