Need Iron Info Please

[PSP-n-Me]

37178.1  

I have been on Procrit for 5 weeks - My hemo went from 8.4 to 10 and now it is at 9.9 - My NP told me she thinks (in her opinion) that I need a building block - iron

She said what is happening is the Procrit is making baby red blood cells, but they are not maturing and that is why the hemo is not going up - She tested me to see if I had a iron deficiency - Will get results in a few days...her theory is this - If I am iron deficient she wants me to take iron supplements (another frigging shot)

My question to y'all - Anyone know why we are always told that we should not take iron, what is the reason?  I asked her about it and she said if iron deficient the body will use it up before it has a chance to store in the liver - I just feel a bit uncomfortable about this and wanted anyone that has had experience with this...

Please no personal opinions, ony those that have had experience

Thanks Beth

[Myown]

My NP told me she thinks (in her opinion) that I need a building block - iron
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Tell her you don't want HER opinion, but your doctors ADVICE. I learned that lesson a little too late.
Wish you the best.

[PSP-n-Me]

do you have experience with iron deficiency?

[Myown]

One of my iron counts (forget which one) was a little low and my hemo 9.6, but yet after receiving the results from the lab my ferritin was very high which is not good if prior to tx and I will ask the next visit if the high ferritin during tx could have been reason for my relapse. I wasn't on procrit tho.

If only your iron serum level was tested, you may want to consider asking them to test your ferritin.

As far as your question about taking iron supplements, I have read that iron can cause the virus to replicate - BUT there may be other times iron IS necessary, I really don't know.

[Myown]

my wording may appear I had high ferritin BEFORE tx but it was normal, only became high during tx and I don't know how long it was high because it was only tested once week 20.

[PSP-n-Me]

yeah they tested ferritin as well - thanks for info it's much appreciated :)

Beth

PS: I was not aware that you relapsed - so very sorry - how long was your treatment, GT and that stuff, if you don't mind answering - I had a dream last night that I relapsed, scared the b'jeez outta me, but it can so easy be a reality - Will you retreat?

[Electra56]

Your healthcare provider should do a full iron work up- hematocrit, hemoglobin, serum iron and iron-binding capacity and liver ferritin.  Microcytic anemia (what your NP descibes as small Red Blood cells) is caused by a lack of available iron. You will only get the true picture of your iron status by analyzing all of these parameters. Iron is important in generating free-radicals- which can damage your cells- that is why some people advocate very low iron stores in liver disease (the liver being the major storage organ).  But you have to find a balance, because iron is also required for many normal processes- and immune function is a key one.  I was diagnosed with severe iron deficiency and before my Doc would put me on treatment he corrected the iron deficiency with an oral supplement-
Get the full work-up.

Good Luck

[PSP-n-Me]

thanks so much for that info - I will most defiantely look at the lab results and compare to see if all those tests were added...Much appreciated :)
Beth

[orphanedhawk]

I don't know the condition of your liver but my heptologist said that too much iron can cause cirrhosis. Be careful.       Good luck.

[PSP-n-Me]

thanks for the input - I have very low liver damage and want to keep it that way, that's why I am a bit concerned about the iron - Guess I will have to wait and see what the lab workup tells me..

Beth

[Myown]

Yeah relapsed. Sometimes when I first wake up in the morning I forget for a minute that I relapsed and then BOOM it hits me. Sort of like when a loved one dies and you first wake up for a split second you forget the person is dead and then all of a sudden you remember and it feels like a truck hit you. Well thats how I was feeling every morning for a few days and after that the relapse was there immediately upon wakening - thats when I knew it sunk in.

But anyhow I am a geno 2 - 0 damage - 24 weeks - healthy as far as I know - thin. RVR - was UND 4 weeks post and then 8 weeks detected. El stinko.

Not sure if I am going to re treat. I have to go for a cryoglobulins test. God forbid I have cryo, I will then have to go on steroids and then interferon which will be the pits and I don't know what I will do, but evidently cryo can be fatal so I may not have a choice but to tx it.

I hate that this disease takes up so much of our life as far as time - appointments and all of that. But as I always say, menopause has robbed me of my coping skills, so even little stupid things bother me no less a disease. I hate when a male doctor says "oh menopause is ~natural.~"  Yeah wait until your wife goes thru it doctor, you'll change your description of menopause from ~natural~ to MENTAL ILLNESS LOL  

Whats your stats? How many more weeks do you have left to tx?

[PSP-n-Me]

oh sweetie my heart aches for you - I am so sorry - You have the ideal GT, but I guess even 2's relapse...I will remember you in my prayers...do they attribute the relapse to anything or just one of those **** shoots?

I totally agree with you about menopause, just ask my husband if it falls into the category of "insanity"  hehehehe

I am GT1A - s1 g1 w/30% fatty liver - and insulen resistant
Currently in week 35 out of 48, showed UD between weeks 9-12...
I had a very easy go of it for the 29 weeks then the chit hit the fan - I suffered sever anemia, which is still not under control - and have horrible dark circles under my lower lids - lost most of my hair, I'm a fright...But this too shall pass (Ihope) so I have 13 weeks left and I am not so sure I will make it - Every day I wake up sicker than the one before and it is getting real old...

I get pep talks from my family and freinds, thank God for them, - But they are not the one that these toxins have devoured without mercy...But, that said I am just whining - I will make it - I keep my eye on the prize...I just hope the medical team I have can correct this anemia stuff soon..

Beth

[Myown]

Thanks Beth, I appreciate your prayers.

Yeah I guess that there are alot of us females going thru menopause on forum.Yes, our poor husbands.

Thats good that the first 29 weeks were good for you.  13 weeks goes fast, but not when you don't feel good - hope things get better for you. I had a very easy time except for riba rage now and then or maybe "now 'and "now" would be more like it.

As far as what they attribute relapse to, I don't know yet. I felt the relapse comming on to tell you the truth so when I went to my PCP he gave me a lab for PCR and the results came back that the virus was back. He couldn't get hold of my hep docs office and when I did, I spoke to him and he said after the Rhemy appointment make an appointment with him. My NP has never even had the decency to email me or call me to say 'sorry to hear of the relapse' or to even give her thoughts on why I may have relapsed.

So needless to say, I am disgusted about that. It takes a minute to send an email and say 'so sorry to hear the news - we'll talk when I see you." I don't understand people. She even told me I was a good patient so I don't know what her problem is - she didn't answer my emails when I said I was feeling weird things like tingles, sweats and all that right before the results. But I will run into her at the office I guess and I'll let her know how wrong she was in not contacting me or maybe I'll just ignore her - but I am thru with her after this. Relapse can be difficult for a patient and she has no idea if I am coping or not - very inconsiderate of her. Well time for me to take a shower and put on my pajamas. Its not even 9 PM and I am so tired and need to go to bed soon. Good talking to you.

[PSP-n-Me]

I hope you have a good nights sleep sweetie - and I am so sorry about your news, and yes I agree with you that your NP should of acknowledged your relapse...Makes me reminded of how very lucky I am to have such a wonderful NP - She gives me free Procrit, hugs me when she sees me, calls me emails me - she is a Godsend to me...

Give yourself a hug from the *dip*

[jmjm530]

If your iron stores are low, then Procrit will not work well. So, in a sense, your nurse is correct, assuming you have low iron stores.  The tests you want are Ferritin and TSAT (trans ferrin saturation). Unlike serum iron, these tests are not included with standard panels and therefore have to be ordered separately. I assume these are the two tests your nurse has ordered, but it can't hurt to double-check. FWIW, all ten participants in the Swedish high-dose ribavirin pilot study ended up on supplemental iron and it did not effect their SVR but it did allow them to continue on treatment. Sounds like your nurse is on the ball.

-- Jim

[jmjm530]

You may find Dr. Franscino's comments on this subject both helpful and reassuring:
http://www.thebody.com/Forums/AIDS/Fatigue/Archive/Anemiatreatment/Q182117.html

Besides, checking iron stores, the other issue mentioned is proper dosing. I started at the usual 40,000 units/week, but ended up needing 60,000 units/week. To achieve this I injected the 40,000 units every five days, instead of every seven. Some here have gone up to 80,000 units/week. Beyond that, it's questionable how much additional benefit you may have. If your iron stores end up being adequate -- mine were -- then tweaking your Procrit dose should be considered. Some, including myself also took B12 injections, as well as Folic Acid supplements.

Not sure they worked, but the benefit of giving yourself IM B12 injections is that all of a sudden the Pegasys needles seems so very, very tiny. (Thought I was going to hit bone with my first IM injection) :)

Be well,

-- Jim

[CockSparrow]

Jim - (Thought I was going to hit bone with my first IM injection) :)
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I wont ask which one. LOL
CS

[jmjm530]

In respect of your 'moniker', I am careful to give enough clearance in choosing an injection site in the thigh :)

[CockSparrow]

Thinks we must have similar sense of humour
CS

[Electra56]

I guess I want to add...I took supplements only long enough to correct the "anemia"- I have had chronic iron-deficiency for something like 10 years and very low liver iron (related to poor absorption)...I also happen to have very little liver damage.  Could just be coincidence....but once my lab values were normal..I stopped taking supplements but continued to monitor my iron status.

[PSP-n-Me]

thanks everyone for all your input - I am hoping I will get the results back by Monday, and I guess I will take it from there - Beth

[Proactive]

iron and hcv
http://www.natap.org/2005/HCV/020705_01.htm

[debnevada]

Amen about the b12 shots, i'm still sure that one of these days i'll hit my femur.

[nygirl7]

The only problem with taking the iron is that iron is necessary for replication of the virus (it assists it) - so basically we don't want it AT ALL.

I started on Epogen 40,000 and then had to take it 2 x a week = 80,000 for it to finally work.  I was taking a lot of extra ribavirin so it was not too much of a shock that my hemo should go so far south so fast.

How long have you been on the Procrit?  It can take up to 6 weeks to really work and that is IF you are getting enough of the stuff.

I would definitely take more of the Procrit before I'd in any iron to my system.....it's worth a try.

[PSP-n-Me]

Nice to see you - If what you say that the iron assists in the viral replication, would that apply to people have reached a UD status or for early on treaters, now you rouse my curiousity

*dip*

[Spouse1]

We use only stainless steel for cooking now since iron pans/pots are also a source of iron - but beware of Teflon, too, since it is now being reported as toxic and all toxics go right to the liver.  My theory is that if iron is not good for you, neither is aluminum.  Any metal (other than stainless steel) will react with anything acidic cooked in it.  

[PSP-n-Me]

I got my bloodwork back regarding the iron situation - no deficiencies!  So, now the Doc is saying to continue with the Procrit every other week - then do blood draw, if the hemo is still 10 or under go back to weekly with the Procrit - they anticipate I may need to continue to take it througout the duration of tx...I hate those needles - that stuff stings like a 100 bees all at once LOL But, it's better to be stung once a week then stay in bed all week long :)

PS: I asked the Doc (not the NP) about iron causing the virus to replicate and she said no - the only time you have to worry about iron is if you have iron overload - then it is real risky to take it, and ESLD patients as well...

But for the average every day garden variety hepper like myself - no problemo

*dippers*

[drofi]

the story is simple: The body needs several factors to build erys and hb: iron, vitamin B12 and folic acid, and the natural epo.
If on factor is low, the whole system does not work well.
On the other hand high iron levels are a bad factro for therapy succes and bad for the liver histology.
Conclusion: Do not add iron without knowledge of the iron values!

Rgerads, drofi

http://tinyurl.com/2pgg24 : many links to papers about iron and hepatitis

Some more links:

http://tinyurl.com/2tsz9b

http://tinyurl.com/3azqua

http://tinyurl.com/32b33b

http://tinyurl.com/3avj5t

http://tinyurl.com/2lofr8

[jmjm530]

Maybe I'm reading your posts wrong, but if your nurse was concerned that the Procrit isn't working fast enough, why then are they going from once-a-week to every other week? FWIW I went from once a week Procrit (40,000 IU/ml) to once every other week after my hemoglobin stabalized. Within 2-3 weeks at the every-other-week dosing, my hemoglobin dropped more than a point and I ended up on 60,000 IU/ml week to get back to baseline. The Procrit hgb curve averages around 2-3 weeks, so things can get tricky when you change your dosage. Hope it works out.

-- Jim

[PSP-n-Me]

My Doctor told me that - I saw the Doc cuz I had to participate in the study I am in - I do it 3 times then 6 months after tx - I am sure she knows what she is doing...I have total trust in my medical team

[alagirl]

Be very careful here.  Make certain to do a COMPLETE workup before she gives you IV iron and continue to do complete workups in between.  Prior to being diagnosed with normocytic anemia, I used to (duck out of here now anyone who doesn't want to read about women's issues - just warning ya!) have extremely heavy periods, for an unusually long number of days.  I was diagnosed with adnemyosis (sp?)  At any rate, I really did have that uterine condition.  My chronic anemia was chalked up to iron definciency anemia resultant from blood loss.  Made sense to everyone, even me.

So my internist gave me about five bazillion iron shots.  Well first of all, let me just warn you, iron shots stain your skin brown.  They are a deep intramuscular injection, but it doesn't matter, they leach out into your skin.  This was about seven years ago.  It took three years for the stains, which resembled bruises that made it seem to anyone I might be dating as though I had some sort of extreme spanking fetish, to fade to nothing.  (Yes, my life should be a movie).  Anyway, it didn't bring my blood count up, so a year later, my internist sent me to a hematologist.  She again diagnosed me with iron deficiency anemia.  She put me on IV iron, to save me from having any more stained thighs and also because it was a more efficient way to supply the iron.  There were several ivs taking up several afternoons during many weeks.  My crit and hemaglobin continued to fall.  They decided to do a partial hysterectomy on me given my uterine condition and in the hopes that with no blood loss my anemia would clear.  They did, and my crit continued to fall to the point that they had to transfuse me in the hospital.  I continued to drop and they put me on procrit.  They screwed up the hysterectomy and had to open me back up and fix an intestinal block stuck to the suture site of the hysterectomy as well as remove my very hot and infected appendix, also stuck to the suture site.

The procrit relieved (and still does) my anemia.  I was having extreme diarhea (diarrhea) though, no idea why.  They scheduled an MRI of the stomach (or catscan, something) and found a tumor, by chance, in my liver (actually it was three small tumors, but the first lab only saw one).  To rule out hepatocellular cancer, they decided to do a biopsy.  They tried to do a lap biopsy, but couldn't get far enough into my liver to reach the tumor.  They did however get a liver biopsy in which they found high levels of iron, due to - you guessed it, the hematologist who had overdosed me on iron when I didn't really have iron deficiency anemia.  Mind you, she'd done a bone marrow sample.  In other words, she had everything she needed to have to have been able to discern that it was not iron deficiency anemia.

Now, back to you.  I swear I related the above not for the telling of it so much as to show you why its important that you understand that these doctors treating us are really limited sometimes in their knowledge.  Even the specialists!  So to answer your question, the reason you have to be careful about iron is that if it settles in your organs it brings on end organ damage much more quickly and necessitates organs transplants.  This is especially bad when you look at the fact that most of the people who get trasfusions on a regular basis tend to already be pretty sick (hemophiliacs and people with other chronic diseases and disorders) and are less likely to be good organ transplant candidates.

This is the reason that they can't just give people who need red blood cells transfusion after transfusion.  Its the very reason they needed a drug like procrit introduced onto the market in the first place, in order to reduce tranfusions by allowing patients to make their own red blood cells.    There were times when transfusions could not be helped in chronically ill patients, but new medications have been innovative and have allowed a reduction of transfusions in that community.  

In my case, even though I was anemic, I chose to have my iron overdose treated at my regular doctor's office (talked them into it actually, they didn't WANT to do it).  I had them bleed me a unit at each visit (once every week or two) and at the same time I upped my procrit (epogen) to compensate for the blood loss.  We did this in increments until all of my blood levels for the various forms of iron were down.  It worked, and once I wasn't swimming in iron, my mysterious severe diarrhea went away.  Due to this, I can only assume it was related to the iron overdose since I've not had it before or since.

Anyway PSP, I'd get referred to a hematologist.  The thing that troubles me a bit is that typically in this Hep C combo treatment, the anemia that patients experience is caused by hemolysis, that is, the early destruction of red blood cells.  That is the typical anemia presentation.  And it makes sense to me with what you've described, younger blood cells that are dying suddenly.  That sounds exactly like hemolysis, blood cells that are being destroyed early.  To me, and I could be extremely wrong about this, but it seems like that would show up as many baby blood cells, because the older cells are destroyed early and the body is trying to compensate by constantly making new baby cells.  And that particular scenario has nothing to do with iron deficiency, as born out by your bloodwork.  The thing is, since your doctor doesn't really seem to be all that conversant with this topic, I'd urge you getting in to see a hematologist.  Especially since there should be no problem I can see in putting you back at once a week on procrit now.  I'd ask for the referral and I'd also ust tell your doc treating for the hep c that you would really feel more comfortable with going back to once a week on the procrit now, rather than waiting.  Tell her that you have difficulty functioning with your blood count at this level.  See what she says.  

[alagirl]

Forgot to erase that first part.  I did see where you said you got your results back and they show no iron/ferritin issues.  Its just that I'd already written that first part and I forgot to go back and erase it before hitting the post key :ox

[PSP-n-Me]

that's okay swetie - you were just trying to help and I appreciate it :)