desferal vs other high iron therapys who knows anything?

[merryBe]

Hi, can anyone weigh in on how well this drug works yet.

You know without this forum I wouldn't have even been being monitored for this at my clinic, so thanks to those who alerted me to watch my iron, Lord give you all a big hug...

I am on SOC and right on the border of needing Neupo, at 10.9WBC and so looking for alternatives to blood removal which will push me into that recue territory.

So which is safer, the neupo or the desferal?.

my iron is at 387..(290 being high end of nrmal)
.should I be worried??

thanks

[merryBe]

in trying to find my own answers..came across this peave of news:

NO MORE WALKS on the BEACH!!!!!   life really isn't a beach anymore??? : ) sniffle

http://www.****.org/Diet.html

[CockSparrow]

Your Iron is going to rise on Tx with all those red blood cells you are destroying
CS

[merryBe]

thanks, I did know it would some, but then you read of major organ damage...

so as a precaution I went on a low iron diet yet it is still rising.

now I am adding decaff tea   for the tannin and Tums, for more calcium to block iron absorption.
although, I know I can't take the calcium in the same meal with the Riba.

here's a little about tannins in tea being helpful.
http://www.veetea.com/site/articles/Tea-and-Iron/

I'm worried phlebotomy may mean I'll need procrit, which is why I was wondering has anyone used the chelation drug desperal and how that went.

[evangelin]

Have you checked in to Lactoferrin.  It works against the hep c virus plus helps reduce iron levels.  You can read about it at the Alchemist Lab website.  They have several good articles about it showing some research that has been done.  I think one of their newsletters was where I read that they were having good results with iron reduction. I have read quite a bit about it in the past and HR has talked about it also.   I think he was discussing it with Gauf or St. George-maybe both.
You are quite the researcher so I thought I would bring this up and see what you think. I have purchased some Lactoferrin from I herb with the Life extension brand name.  HR says it would be best introduced when your viral load is been knocked down on tx because it doesn't take long for the virus to mutate around the antiviral aspect of it. (my wording of that probably wasn't the best but I think you'll know what I mean)  HR thought it could have some merit in reducing relapse.  I have considered giving it to Joe if he gets close to undetectible and needs an extra push-just my own conjecturing though.  To get all that in the same package as iron reduction seems like a good bargain to me.
By the way, why can't you take Ribavirin with calcium...have I missed something?
Blessings,
Ev

[CockSparrow]

I know how you feel it worried me on Tx to.
Mine rose to quite high levels. They dropped after Tx.

Sadly they then rose again.
After taking all them supps it dropped again and by a lot. It was the NAC (i think)

I cant help with the desperal, but I think Iron has to be high over time to cause organ damage. You rust basically.

CS

[CockSparrow]

I'll second the lactoferin thing.
CS

[merryBe]

thanks, no I didn't know that...I knew lactolose reduces ammonia...but hadn't heard of lactoferrin.....so much to learn isn't there.

the Riba will not absorb well in the presence of antacids so they told me not to take them in the same meal with the Riba.

evidently, both digestive enyzmes/bile/fat all aide in Riba absorption. Anything that neutralizes any of these interferes with full absorption. Even too much fiber in a meal can interfere.  I sometimes just eat the Riba with a little cheese half an hour ahead of my dinner now, so as to give it the best chance to get into the bloodstream.
I've also taken to adding tums to things high in iron....like a late night bowl of sugarless chocolote icecream gets extra calcium so none of the iron will absorb.

I guess if one real wanted to get anal one could stop all heme foods in the same meal with non-heme foods.  
I mean, if you mix meats with veggies the meat helps the non-heme (normally non-absorbable iron) to absorb.
But since I've already lowered my proteins to 1-2 oz of white meat only, I don't know how much difference that would make.

Cereals are a big culprit...some as high as 50% iron...but I've already switched to zoom and oatmeal or shredded wheat only.
One must watch out for fortiefied pasta/bread and dairy products.
Citrus helps iron absorb...so no more lemon water etc. If I eat an orange, it's by itself not in combo with meats or salads like before...
there's so many things to do...sheesh.

Have you got any diet tips you've discovered?? Iron is in everything so it's been a challange!
thanks.
maryB

[merryBe]

thanks for the above post, I just got you and cocksparrow mixed up...the above post was to you.

thanks cocksparrow for your imput as well!!

[merryBe]

thata a tough condition to have, they just had a special on Medical Mysteries about a woman with the abdominal form of porpheria...it is painful and liver people can have either type  of this debilitating disease.

One more good reason to have a hepatologist and hemotologist on board as many gastro guys never think it might be this.

the woman on the show went to 14 docs before one figured it out..

[Xenigma]

I assume you are talking about ferritin.
My last bloodwork at the hematologist showed my Ferritin at
780.  (Labcorp's normal range is 10-291)  None of my docs are concerned,
they say it's from tx. I got lucky and found a oncologist/hematologist who knows
quite a bit about tx for HCV.
He's not concerned but wanted to make sure I am not taking a multi-vitamin with iron.
I assured him I only take centrum silver and stopped taking my vitamin C 3 months ago
due to a gut feeling I should not take it.  He asked if I had been drinking any alcohol and
of course I haven't drank any in 24 years now.  He then said it's from tx.

My Iron, serum is 73 - normal (35-155)
My Iron binding cap (TIBC) is low at 248 (normal is 250-450)
My Iron saturation is  29 - (normal is 15-55)

If my docs (I have 4 that follow me) aren't worried, I have one less thing to worry about.
I hope my 780 puts your mind at ease. (BTW- I just did shot #36)
enigma

[merryBe]

the name of the site is ironoverload dot org.....somehow medhelp bleeped it.

here is their recommendation:

                  Hemochromatosis  and Anemia Diet
  This diet is especially important for those in protocol treatment

1.  A low iron diet is not recommended or even possible to design.  Iron is in everything
and foods that contain iron also provide other essential elements to help heal and rebuild
the body.  Red meat is an important source of B vitamins.  Fresh fruits and vegetables
benefit the liver more than processed foods.

2.  Iron is not excreted.  A normal metabolism for iron refrains from absorbing more than
the daily need.  One milligram of iron is lost daily through hair, fingernails, dead skin cells
and other detritus.  The average daily loss for menstruating woman is one and half
milligrams.  That one or one and a half is the daily need despite outdated levels
recommended by the governmental agencies.

3.  Body damage from iron injury is entirely preventable.  Treatment is completely benign.  
An individual with elevated iron should begin protocol treatment and be motivated to bring
ferritin to the lowest end of normal ranges.  Then the patient must continue a maintenance
program to prevent the re-buildup.  Each individual loads iron at a different rate.  The first
year is experimental.  Measure the ferritin - measure of storage iron - at the end of each year,
and adjust the schedule as necessary.

4.  Protocol treatment is blood removal once or twice a week at the blood bank.  The patient
should be well hydrated and should not skip meals.  Treatment is inexpensive or free in some
cases and is effective.  Such treatment will return the patient to a normal lifespan and reverse
most if not all symptoms.

5.  With a hemoglobin of 10 or higher and a hematocrit of 33% or higher, a full unit of blood
should be drawn off once or twice a week.  The blood is usable as donor blood when it meets
all safety criteria.

6.  What about anemia?  Anemias are iron-loading, except for anemias resulting from  chronic
blood loss or tumor.  When iron accumulates in storage instead being used by hemoglobin,
the patient's hemoglobin will test low.  Iron should not be administered.  Instead the patient needs
a complex of B vitamins, including B6, folate or folic acid and B12.  The excess iron must be
removed despite the anemia.

7.  When low iron is found, it is essential to seek the source of the blood loss or cancer.
Cancer cells require iron to proliferate.  It is dangerous to medicate with iron without first
knowing the iron levels and then discovering the reason for low iron.

8.  When anemia is severe enough to require transfusions, physicians should be aware that this
process will increase the dangerous iron burden.  Iron must be simultaneously removed through
the iron chelator Desferal or a new chelator called Exjade.

9.  Preventing liver cancer is the patient's primary goal.  The patient should avoid medications
where possible and protect the liver.  The physicians should use medications only when
absolutely necessary.

10.  Alcohol should be avoided until the de-ironing process is completed.  When liver
enzymes return to normal, the patient may cautiously ease back into social drinking.

11.  Tylenol ® - acetemetaphen - should never be taken with alcohol.  The patient who tests
with elevated liver enzymes, as many do, must avoid Tylenol ® altogether.

12.  Those in protocol treatment will benefit from a B complex of vitamins, including B6, folic
acid or folate and B12.  Low doses of vitamin E - below 50 International Units daily is also
beneficial.

13.  Iron patients must check labels of processed foods for added iron or vitamin C.  An
example is that oatmeal or shredded wheat should be selected instead of the breakfast
cereal Total ®.

14.  Who should take iron?  The only candidate for iron supplementation is an individual
who has had large portions of gut surgically removed.

15.  The patient must not take any over-the-counter vitamin C as a pill.  It has been found
to mobilize stored iron into the heart muscle where it sets up arrhythmia or heart rhythm
disturbances.  It can also cause people to over absorb iron even from their ordinary diets.
And it can fire the iron that is stored in the joints and makes arthritis worse.  Of course
everyone will need vitamin C in their diet.  The source for vitamin C should be any
uncooked food.  Fruits, juices and salads are excellent sources.  Multi vitamins even
without iron should be avoided because of the vitamin C restriction.

16.  The patient must not eat or handle raw seafood.  Cooked is OK, but not raw.  Iron
overloaded patients should also not walk on beaches barefoot.  This is because of a
bacterium common in all sea water called Vibrio vulnificus.  This bacterium when it
encounters stored iron is catastrophically toxic.  Every year it is the cause of death and
maiming when an undiagnosed iron overloaded patient comes in contact with this bacteria.

17.  Drinking tea can help inhibit iron absorption.  Tannin is the blocking agent.  The patient
should understand that this will not be a replacement for protocol treatment.

18.  Excess iron stores in liver, heart, brain, pancreas, joints and everywhere.  Iron oxidizes
- rusts - and results in deadly and expensive disease.  Symptoms of heart disease, cancer,
cirrhosis, diabetes, arthritis, sexual dysfunction and others are completely preventable when
they are based on iron.  Maintaining low iron levels improves immunity, making iron unavailable
to viruses, bacteria and cancer cells.

19.  The most common of several iron storage diseases is hemochromatosis.  It is caused
by the most frequently expressed genetic abnormality in any population and can result in the
metabolic defect that leads to iron overload.  It is estimated that 42 million Americans are at
risk, including those with the double gene and those with the single gene expression.  The
single mutation may result in enough excess iron to cause heart attack or stroke, aside from
full blown hemochromatosis.

[jmjm530]

Regarding that link above:

Blood removal (phlebotomy) may have a place in some with iron overload PRIOR to treating, but I would think dangerous to anyone DURING treatment. As CS suggests, iron sometimes elevates on treatment. So if your liver specialist isn't concerned, I'd not going looking for a cure, supplements/dietary changes, etc,  which could potentially be worse than the condition. As to needing Neupogen, what you should be concerned about is your ANC (absolute Neutrophils). While some docs intervene when ANC hits 1000, many let it drop to 500 or even less  before starting Neupogen.

[MaryRuth55]

I take exjade, 500mg one time a day.  My iron level was 5555 when I started a few months ago, now it's 4750.  I'm having to stop for awhile due to numbness in feet and one hand.  Plus the nausea is bad with it also.