Treatment and Maintenance Treatment The logic of the protocol treatment is to induce a mild anemia and maintain it until the storage iron is greatly reduced.  Serum ferritin is the measure of storage iron and this number needs to come down below 10.  This is accomplished by bloodletting - therapeutic phlebotomies.  By phlebotomy we mean removal of a full unit of blood from the patient, approximately 500 mls.  This should be done  in a medical setting.  The schedule of this treatment should be twice a week or at least once a week.  The patient must be motivated to off-load the iron as fast as possible.  The best outcomes are achieved by aggressive treatment.  Timid treatment does not work - these phlebotomies must be at least weekly.  The attending physician writes a prescription that tells the blood bank to remove a full unit of blood according to schedule as long as the patient has a qualifying hematocrit of 33% or more.  Some locations might prefer hemoglobin which should be set for 10 or above.   It is important to establish an anemia and not let up on it until de-ironing has been completed.  The might take from 6 months to three years depending on the iron burden.  Age is never a reason to disqualify someone from treatment.  Frailty, small of stature and extremely old/young may require the adjustment in amount of blood removed, but never adjust the frequency.  This process can arrest or reverse most symptoms and return the patient to a normal lifespan.  Some patients might experience a complete reversal of all symptoms.  To exclude anyone from treatment for any reason is a death sentence. Chelation For those people who cannot be bled because of extreme anemia, there is chelation.  There are two chelators for iron approved in the U.S.:  Exjade and Desferal.  This approach lacks the complete efficacy of bloodletting and should be employed only where absolutely necessary.  Declared an orphan products by the manufacturer Norvartis ,  they are expensive.  A course of chelator per month $6000-$8000.  For some, Desferal is infused over night with a portable pump at home during sleep over a 12 hour period.  In some cases, the infusion pump is installed in the body of the patient.   Exjade is the newest of the two and a replacement for Desferal.  Exjade is a daily pill and with less side effects than the former.  This will off-load some iron and prolong the patients life.  Mild anemias such as the lesser thalassemia and some of the sideroblastic anemias may qualify for phlebotomy.  A physician considering chelation for a patient should consult an expert to see if their patient won't qualify for bleeding after all.  For those patients who have tried this approach and found for some reason they could not tolerate this regimen call our office for an alternative. Call us about an exciting new chelator now available - Exjade. Maintenance After the patient has had their ferritin reduced below 10 they are declared de-ironed.  Now it is time to change the phlebotomy schedule.  Usually 2-6 times a year is sufficient to keep them from re-accumulating the overload.  In this process the threshold of the hematocrit/hemoglobin can be raised somewhat.  For the first year deciding how often is a matter of trial and error by the physician and patient.  Serum ferritin should be checked yearly to this end.  Maintenance will have to be a life time affair from this point on.  To permit re-accumulation is to invite a premature death. Venous Access Some patients will have limited access to the veins for various reasons.  There are some things that may help with this.  If the veins are small, deep set or without tensile strength; a smaller needle might be used.  A butterfly needle - 18 gauge - helps tremendously.  It may take 10-15 minutes longer in the bleeding process but helps with venous health overall.  In some medical settings a glass bottle is used and set on the floor.  This approach can cause too much vacuum on the veins and may collapse them before a full unit is taken.  Blood banks and labs that use the latest equipment are the best treatment settings.  In some extreme cases a catheter or shunt can be installed in the shoulder for access.  This method has added maintenance problems so it should be used only if absolutely necessary.  In the list of priorities treatment needs to be at the top.  Any process that helps with patient compliance should be pursued. Treatment Myths IP-6 chelates iron.  This will never work and is a waste of money. Lactoferrin chelates iron.  It is in fact a type of iron itself and not at all a chelator. Diet will reduce iron that has already been absorbed.  Some have died with this approach. Ionic-foot baths remove excess iron.  The iron molecule is too large to pass through the skin. Watchful waiting will see the ferritin reduce.  Doctors risks their patients with this method.           There is no substitute for the proper protocol treatment in the face of iron overload.                               To Join our organization go to our web page entitled Contact.  .                                           Need an expert to confer with or questions:                                         E-mail:  iod@ironoverload.org   Iron Overload Diseases Assn.                                                  PO Box  15857 West Palm Beach, FL 33416 561-586-8246 866-768-8629  Toll Free                             We hold all correspondence in the strictest confidence This site is supported entirely by memberships.  If you feel that this site is of value, we hope that you will consider joining with us as a member of our organization.  It is an excellent way to stay updated on this important and complex subject.  Simply click on the membership button below.                                                    Membership       Add this web site to your favorites list in your web browser

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Hemochromatosis                HEMCHROMATOSIS                                        PORPHYRIA     hemochromatosis