secondary hemochromatosis

[roxxie]

My husband was diagnosed with hep c 1a a little over 1 year ago, biospy shows severe activity and cirrhosis, mild fatty change, and mild stainable iron, knodell score 13 out of 18. Was a non responder to peg after 4 months, Dr. said take a break 1 month then infergen, and to get iron test, hemochromatosis, Dr. precribed phlebotomy once a month and to come back in 6 months. Dr. didn't say gentic or secondary, I know from reading that its secondary and is very devastating to the liver and should be brought to a normal level as soon as possible,is this your understanding? and do you think once a month is enough? He has had 2 phlebotomys and tests showed befor the 2nd one iron level was the same as 1st, also 13 out of 18 if you can show me from 1 to 10, Thank you for any help.
                             Roxie

[roxxie]

thank you for your help. how do I get to where  I can ask the doctor? thank you

[annainitaly]

your question is in specific terms and you may want to post it to the doctor. here is what my experience as a patient can bring for an answer.

I guess that how often phlebotomy is done depends on the amount of iron your blood is carrying. my aunt has genetic hemochromatosys (and so do I, but since I still have my menses it's not a problem for me at the moment). she was diagnosed at the age of 70 and the docs started taking her blood off once a week for the first period, then progressively less and less often. now she hasn't had a phlebotomy for more than a year and her blood tests are ok.
I don't know the difference between genetic and secondary hemochromatosys. but I believe that with regular controls and phlebotomies it can be kept at bay without creating big trouble.  
I wish you and your husband all the best.

[eztagger]

Hello -

I thought I had hemochromatosis so without going to a doctor about it, I did research and decided to give blood...

which is when I found out I have Hepatitis C.

According to the following site:

http://www.irondisorders.org/treatments/phl/index.htm

"When tests Indicate you have iron overload......
A doctor's prescription or an order is needed to obtain the phlebotomies. Usually an order is written for weekly or twice-weekly phlebotomies so long as "pretreatment spun hematocrit is greater than 34%". Hematocrit measures the volume or amount of hemoglobin contained in a person's blood."

Best wishes to you.