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

[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

[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*

[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]

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]

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]

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