Results from procrit/eprex by when?

[Trish77]

I had my weekly blood test this week same day as my fourth injection of procrit/eprex.   I've had slow improvements each week in my hgb from 9.8 to 10.3 to 10.6 and now I'm back down to 10.0 a week after the third injection.

What's up with that?  Is this typical?  Wondering others experiences with this? I had really been hoping to see a significant improvement, not a drop back down to almost where I started.

Thanks.

Trish

[Marcia2202]

Just got back from my big appointment and am soooo happy... Am starting tx on the 19th, our wedding anniversary! Good omen!

To what she said about the iron and the vitamin K. She wants me to take the 25mg iron and the 150mcg vitamin K for the next two weeks and see what happens to my hemo, ferritin, transferrin, coagulation factor, etc. So she is monitoring this closely already now before tx and we will decide how to go on.

She was great, am so happy!!!

Marcia

[Marcia2202]

I wasn't aware that the virus feeds on iron. I thought we shouldn't take it, because an 'HCV liver' has problems metabolizing the iron? And people start having too high iron counts because of that. If your iron counts are low, they should be somehow helped up., before going into tx.?? Maybe I'm totally off here. I guess I gotta go back and educate myself more on this iron thing.

Marcia

[nygirl7]

I had to up my epo from 40 to 80 a week (2 x 40,000) as 40,000 stopped me from dropping further but did not raise my numbers at ALL.

Procrit DOES take a while to work - I wouldn't let anyone put me on Iron unless it was absolutely and totally necessary beyond reproach...........the doc even told me to make sure I did not eat too much steak or leafy green veggies so to me, I'd wait a little while and see if the procrit worked rather than help that virus grow itself in ANY way.

Just my opinion but.........help feed the virus? no not while or before I was treating, no way!

[Marcia2202]

Thanks Jim. I'll let you know what the doc says tomorrow. She is one of DK's top HCV hepatologists. I am so excited about the appointment. It will be interesting to hear what she thinks about this AND everything else, of course.

Marcia

[jmjm530]

Not sure if "controversy" is accurate. My understanding is that in general you should not take iron supplements unless: (1) you are on Procrit; AND (2) Your iron stores (Ferritin and TSAT) are low. Of course check with your doc. Probably a good question for Doctor Dieterich who treats a large number of patients and no doubt many of them are on Procrit.

[Marcia2202]

My HB was 13.05 in June and went down to 12.56 now.  Iron from 142 to 101. Transferrin from 34 to 31 and Transferrin saturation from .34 to .30.
Some of these counts may differ from the ones you use in the US, as we use SI Units (the new international system) here in Denmark. All my counts are well in the normal range, not to the high, nor to the low. I'm just seeing a slight change in the same direction and am apprehensive. I guess I just have to start stuffing myself myself with more green salads adding curly kale and baby spinach again. I used to eat them every day, but have been a bit lazy the last few weeks. I just went out an bought a whole lot of greens and had one... That felt good.

Marcia

[virgocharm]

my hep put me on iron 3 times a day. i have not started tx, was all set to. hep doc said she want it back to normal before i start. my hemoglobin was at 9.8 and ferritin  at 7,should be at 11 to be normal.my iron saturation was at 5, and to be normal, should be between 16-60. and iron should be between 35-150. my was 24 low .

[jmjm530]

Keep in mind that adequate Iron Stores are needed for Procrit to work but you are not on Procrit so it may be an entirely different story and in fact your lower iron may (or may not be) something positive in terms of treatment ourcome. Let us know what your hepatologist says.

[Marcia2202]

Talking about the controversy of taking iron supplements...  This is very interesting! My HB, iron, ferritin, transferrin and saturated transferrin have been very slowly sneaking downwards pre tx and I was going to talk to my hepatologist about it on Tuesday.

Jim, thanks for posting all this... I think I might need an iron supplement already

Marcia

[jmjm530]

The same cut-offs are used here for Eprex -- see page 15

[jmjm530]

I've seen similar cut-offs used before, but keep in mind this is not a HCV specfic article and it's for Procrit. Also, the part about "all patients will eventually require ..." is not accurate for those of us treating for HCV as most here who used Procrit (epo) did not use supplemental iron. Again, best to ask a doctor -- like Dieterich -- with a lot of experience in this regard.
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"...Prior to and regularly during PROCRIT therapy monitor iron status; transferrin saturation should be greater than or equal to 20% and ferritin should be greater than or equal to 100 ng/mL. During therapy absolute or functional iron deficiency may develop and all patients will eventually require supplemental iron to adequately support erythropoiesis stimulated by PROCRIT..."

http://www.****.com

[jmjm530]

You might want to post to Dr. Dieterich your serum iron, TSAT and Ferritin values both before you started the iron supplements and now that you're on them. Meanwhile, you should be able to find cut-off values for TSAT and Ferritin on your Eprex insert or through online research. I know it was on the Procrit insert the last time I "googled" it. If I can find it again I'll post.

[Trish77]

The doctor put me on 300mg daily of ferrous gluconate (elemental iron) when he prescribed eprex, saying that my iron is low.  I'm on 40,000 IU/ml weekly of eprex.  When I asked this week what my iron levels were at the moment, I got the astounding reply that we're not testing those.  wtf?  To make matters worse, she then responded that the doctor was basing my iron levels on tests done in 2007.  I don't get that at all.  So yes, I have asked for ongoing iron tests and she will get back to me if they will do them and if they do not, I'll go to my family doctor who will likely do this for me and I'll monitor it for myself.  

I'm looking at my CBC's throughout my treatment and they all have entries for transferrin and ferritin.  This is what you're referring to, isn't it?  If yes...is she referring to serum iron as what we are NOT testing for?  Does serum iron have any bearing on this at all?

I will see if I can find what the normal levels are for transferrin and ferritin so I can determine where I've been at and how I'm doing ongoing.

Thanks Jim.

Trish

[jmjm530]

What was your starting dose? With Procrit it's usually 40,000 IU/ml per weekly injection. Hopefully, it will still kick in as it sometimes takes up to 4-6 weeks. If not, some have more success with 60,000 per week (I took 40,000 every 5 days to achieve that). Also, have your iron stores been tested? Those tests are Ferritin and TSAT (transferrin saturation).They are different from serum iron. If your iron stores are low, you may need iron supplementation for the Procrit to work effectively. Do ask for these tests if you havent been given them.