who do I listen to???

[lauraisstrongerthenHCV]

ok so I go to the hematologist and he decides to put me on procrit...after a long battle with the insurance company I finally get it (hgb 10.6 and hct 30)  anyway in addition he gives me iron pill and said to take them and that if they make me sick then he will give me IV iron weekly........my question is I thought iron was bad for your liver and some people on this forum keep saying not to take iron????  I asked him and he said everyone needs iron!!!!  I am confused????????// needless to say I have had the procrit and the iron for almost a week and havent took either ;(

[sunspot]

I have given myself many procrit shots and never took any iron. Did he run an iron panel test?

[outofgas]

take the procrit I heard you should stay away from iron when you have hep.

[52TELE]

My wife through an iron at me once.

[cuteus]

procrit needs serum iron to work properly, but unless you are deficient or not eating enough to meet your daily needs, I don't see why you need to take it. and IV???  too much iron is not only bad for the liver but for the heart too!

[GrandOak]

As cuteus identified, iron is necessary for Kidneys to respond to the cell production Procrit induces.  You shouldn't need a supplement unless you've had a blood lab test done to check your iron levels and it's been determined that you are low. I would check with your doc and ask why the supplement without first checking to see if iron levels are defficient?

For me such a test was run a couple of days after a lab showed Hgb had dropped despite no changes in medications.

They also ran a test to see if immature red blood cells could be seen, was run when it seemed that after being on Procrit for awhile that it was not working anymore.  Fortunately my iron levels were fine and immature cells were seen, not to mention that Hgb had increased again when they drew the blood for those labs.

I was also told to avoid iron supplements, and a high iron diet, especially while on tx because iron is hard on the liver.

[NYgirl]

Maybe a hemo doc isn't so aware of the viral replication factor of iron - that is a problem with mixing doctors, the hemo won't know the info that a Hep Doc would.

I wouldn't take it unless I positively KNEW that I was DREADFULLY low and HAD to - viral replication is the last thing in the universe you want to encourage right now.

Plus Procrit will do the trick on it's own most likely.

[sunspot]

Maybe the doc thinks you have a low iron anemia? I doubt you have that. Us heppers get Hemolytic anemia.

From Google.
Hemolytic anemia is a condition of an inadequate number of circulating red blood cells (anemia) caused by premature destruction of red blood cells. There are a number of specific types of hemolytic anemia, which are described individually.

[APKhaos]

This is confusing, and contradictory.

1. Iron plays a critical part in the viral replication cycle. When diagnosed, one of the key dietary changes is to reduce or eliminate iron from the diet. [exactly what nygirl already said.]
2. Iron is needed to support HGB production [and other things]. Iron play sa big part in the treatment of Anemia.

So,after dx and before tx, iron is pure badness. If you are a cereal junkie, take a look at the iron content. I found some great stuff that is just 5% of daily blah blah.

Then, when the HGB started dropping during tx, the clinic says that additional iron is OK. Was not sure if I wanted to take the chance, so I'm sticking with the low iron plan until SVR. Don't give those little buggers any kind of help.

[jmjm530]

It's not cut and dry with iron.

Procrit needs a certain amount of iron to work and therefore supplemental iron is often prescribed when needed. The question is if the iron is needed.

One rule of thumb is that if your TSAT is below 20% and/or Ferritin below 100, you may need supplemental iron. If your doctor didn't run the TSAT and Ferritin tests you might ask him.

Like many of the others here, I never took supplemental iron with my Procrit. I did insist on an iron stores test however, and as my NP predicted the iron stores were OK.

Sounds like this might be a case where a second opinion might be in order. On one hand you don't want to take iron if unecessary because of liver toxicity, but on the other, you want to take it if needed (low iron stores) and also want to be in sync with your doctor.

Good luck!

-- Jim

[hippygem]

I asked my specialist about iron and he said it is the people that produce too much iron naturally that have to worry in regards to viral replication and interferon tx.

[Pauly Boy]

When I started taking procrit there was no conversation about taking iron. However, they did take iron levels and ferritin levels and found my iron levels were very high. So after I get done with this tx, I'll need to have a bx done to see if I have hemocromotosis: an illness that doesn't allow the body to shed iron naturally. It didn't affect my HCV tx at all, right now. How are you feeling? When I went for the procrit, I was nasty, shortness of breathe, fatigued, always felt out of it. How are you holding up? So the sooner I started the procrit the sooner I started feeling beeter. Not well, but at least I didn't pant like a dog walking around the house. Talk to your doc immediately about this, get some answers. I'm sure you want to feel better. Good luck; keep killing those critters!!!  Pauly

[FDB]

Just like with Pauly, there was no discussion about taking iron when I was put on procrit and it did help.  My numbers did come up a bit, but unkike Pauly I did continue to pant like a dog just walking from the bedroom to the bathroom. (Hmmmm....maybe I needed iron!)    :)

As a heads up, I myself as well as other people I know that were taking procrit threw pulmonary embolisms so please keep in touch with any change in symptoms of pressure/pain in your chest, neck and legs during and after taking it. What I was experiencing as fatigue and discomfort from the anemia were actually signs of PE's, so read up on the symptoms for because there are a few.

Keep up the FIGHT!!!!

Hi Pauly, how much longer do you have to go on tx?
What is the status of your liver if you don't mind me asking?

FDB

[MissMiss]

FDP, I commented to you below.  Again, sure glad you made it thru that awful thing.  Phew!

Laura, as with anything, go into this with as much info as you can gather.  The PE's are a rare side effect.  I took Procrit thru most of my tx and towards the end was taking 120 a week.  That is a huge amount!  My HGB was in the sevens then.

Also, please get copies of your tests.  Some have charted their numbers.  Just know your numbers, low HGB can have different meanings to different doctors. Knowing your numbers can help you in a lot of ways.  Docs are human and can miss something.  How you handle the anemia is a factor and how fast your HGB has dropped.  Procrit really is a wonderful helper for a lot of people.

Whatever happens, be well informed.  Read the insert.  Procrit really has enabled many of us to finish tx.  I couldn't have finished without it.  (48 weeks, finished mid-August, und so far!)

Good luck,

miss

[Willy50]

All heppers are different.  I know some folks with advanced HCV that need phlebotomies to reduce iron.  I know of another with end stage liver failure that is getting iron IV.  The point is don't assume.

I presume your hemo has had your iron levels tested.  I'd also guess that your hemo is on top of what they are doing.  It would never hurt to double check with them about it and get a clear response.

I certainly have heard of a few doctors that have not been aware that many heppers have iron levels that are too high.  In general most men and post-menopausal women have sufficient iron stores and don't need iron supplements.  All heppers should get theirs tested at least once to determine if high or low iron could be an issue for them.

Best,
Willy

[lauraisstrongerthenHCV]

thanks to all that commented sorry not to write back right away but I lost my internet access for a while!!!!  I read all of your comments and they all helped me out a lot so thank you!!!!