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

[Trinity4]

I don't know anything about desferal but before I could start tx I had to have 13 phlebotomies to reduce ferritin level.  I started out at 783 and got down to 17.  I had a condition called porphyria cutanea tarda which causes iron overload.  When I had my bx back in Oct they took several samples to test the iron level in my liver.  It showed I did not have excess build up in the liver and pretty sure I had porphyria for a least a year before seeking treatment. Blood test back in Oct showed my WBC at 4.1 which is low and last blood work on 4/10 showed I dropped a half a point but doc still wasn't concerned yet.  Of course, I'm not real happy with my doc right now anyway so maybe I should be concerned for the both of us.  I'm not experiencing any anemia yet either but only in my 6th week of tx. He also said he will keep an eye on my ferritin level as tx progresses and may have to have another phlebotomy if levels rise too much.  Thought I'd share that with you.  Everyone is different and what works for one sometimes doesn't for another.  Hope you find a good solution.
Trinity

[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