You will be anemic, if you are in a trial you may have to dose reduce or take the procrit. If you're not in a trial, you will be anemic like you are now. I don't know how you are doing it being down that low, but you're doing very well. good luck
Please don't make the mistake I did! I did not feel that bad either and did not want to add another shot but I wish I had. Even exercised when my hgb was in the 9's. But then it dropped to 8.6 and then rapidly to 8.3, 7.9 then 7.7. THEN I FELT REALLY BAD! Took everything I had not to faint and vision was blurred. Dizzy and sick for for 3-4 weeks. It took a dose reduction of Riba and 4 weeks of Procrit to bring me back up to 9.4. It felt like forever. Procrit gave me my life back.
hmmm, but I have read somewhere on this board where a person was down to 6.something? I mean, I'm weak and it's tough to walk up stairs but I don't feel as bad as I did during the first 12 weeks and I was around 10 at that time. I just wondered if anyone new if damage or irreversible harm could occur.
Here's the problem. Procrit (epo) can take 2-4 weeks to fully start working. So assuming your hgb does not stabalize at 9.1, next week it could be in the 8's. By that time it may be too late for even the Procrit to save you and you may have to dose reduce. Yes, I've seen hgb around 6 here, but I've also seen it higher than 6 where a transfusion was needed. Do you really want to take the chance? If your doc is suggesting Procrit, I would take it.
Jim - Actually, my doc is not suggesting procrit, yet. Of course, that doesn't surprise me. I've learned that they will cut corners in that medical group anywhere they can. What the PA said two days ago, they will wait until my next month's lab. BTW I like the PA better than the doctor.
Marcia - you may be right about the ANC - I can't remember anything these days.
Geez, one thing I didn't know going in was that I would have to wear boxing gloves throughout the entire treatment. Have to fight for my meds, have to fight for lab tests, and have to fight for proper treatment.
maybe get an iron study, but should start procrit like now. i've been on it for 4 weeks already and seen no improvement, but at least better than not doing anything and watch it drop, it's really dangerous to have it below 8 i think bc it can cause heart problems, i've had mine in the 9's and have trouble catching my breath just walking sometimes. and definitely better than a transfusion right?
I'm also faced with the same situation, except mine is coming at the tail-end of tx instead of in week 18 of 48.
If I were in week 18 like you, I'd start Procrit now - if I could - rather than having a dose reduction imposed on me. As people said, it takes a while to kick in.
I'm half-wondering if our labs are the same and s-crewed things up this week. I have had above 10 for 43 weeks of tx but today got a call from my nurse saying my hgb went from 11.2 to 9.9 in two weeks.
Like you, I've been feeling pretty good, even jogged a bit last week. (Huh, maybe that's why it's down!)
It's tricky for me because I'm so close to the finish line, with only five weeks left. My nurse would normally offer me Procrit if I were at your week 18. She might think it more sensible to dose reduce at my week 43.
Of course, I don't want to (and won't?), even though I've heard from many that it probably doesn't matter to reduce the riba at my late stage.
In your case, I'd do Procrit as a first response. In my case, I don't know what to do and feel topsy-turvy right now. I hate making decisions but if I were in your situation, I'd opt for Procrit in a flash.
Here are two articles, though I can't vouch for their accuracy:
2) This second one recommends Vitamin C and E supplements! I don't take them but I might, temporarily and out of desperation.
High-dose vitamins E and C supplementation prevents ribavirin-induced
hemolytic anemia in patients with chronic hepatitis C
Yasunori Kawaguchi, 1 Toshihiko Mizuta, 1 Kazuhiro Takahashi, 2 Shinji
Iwane, 2 Keisuke Ario, 1 Hiroaki Kawasoe, 1 Kazuhiro Hamaoka, 1 Yuichiro
Eguchi, 1 Tsutomu Yasutake, 1 Hironao Shigematsu, 2 Seiji Kawazoe, 2
Noriko Fukushima, 1 Iwata Ozaki, 1 and Kazuma Fujimoto 1
Copyright 2007 The Japan Society of Hepatology
Aim: In combination therapy using interferon (IFN) and ribavirin for
chronic hepatitis C, reduced doses should be used due to
ribavirin-induced hemolytic anemia. The present study aimed to elucidate
whether high-dose vitamins E and C supplementation attenuated
ribavirin-induced hemolytic anemia.
Methods: Twenty-one consecutive patients with chronic hepatitis C were
enrolled in this study between July 2003 and December 2004, and received
high-dose vitamins E (2000 mg) and C (2000 mg) supplementation, daily,
in addition to IFN alfa-2b and ribavirin combination therapy (vitamins
E/C group). Twenty-one sex- and age-matched patients who received a
standard regimen of IFN alfa-2b and ribavirin for chronic hepatitis C
between January 2001 and June 2003 were evaluated as the control group.
Results: Decrease in hemoglobin level was significantly prevented in the
vitamins E and C group compared to that in the control group (P =
0.029). Three (14.3%) patients in the control group discontinued
treatment because of anemia, while no treated patient dropped out of the
study due to anemia. Sustained virological response was not
significantly different between the two groups.
Conclusion: High-dose vitamins E and C supplementation prevented
ribavirin-induced hemolytic anemia during combination therapy with
ribavirin and IFN alfa-2b in patients with chronic hepatitis C.
Sorry your hgb is dropping, but like you wisely point out, your situation is markedly different from "Yuk's".
If I understand you correctly, you're now week 44 out of 48? So let's say you did take Procrit, it probably wouldn't kick in until week 46 which would only give you two weeks of benefit although some might argue it would confer some post tx benefit but unlike some, I was told to stop Procrit at EOT and let things take care of themself without the drugs.
As to what to do, my medical team would probably tell you to drop the riba dose a little because at this point it will not make any difference. I say this because that is what they told me around week 44 of what became 54. Of course I didn't drop the riba because I was riba-compulsive but I was on Procrit anyway so I just titered the Procrit up a little.
But in your case you're not on Procrit, so not sure if the two weeks worth of benefits outweigh the risks. Frankly I could see it argued either way and as an involved patient I'd probably lean toward the Procrit and keeping full dose but as a more objective outside observer, I'd probably just drop the riba a notch. Truth is at this point you're most probably either SVR or not, regardless if you ever take another riba pill again and, of course we're all rooting that you are SVR.
Try not to worry or obsess. Just do one or the other, whichever feels good and that is the right choice.
Stacie, I re-read you posts. I'm wondering about the fact your medical team said it will do nothing at this point about your HGB dropping to 9.1 but wait for next month's labs.
I myself don't get the greatest medical care compared to many here but when my HGB dropped to 9.9, my nurse immediately called and we arranged that I do extra bloodwork this coming Monday to see what's up. I don't know what the upshot will be but I found it reassuring that she made an issue of it dropping below ten. That seems to be a common red flag point.
Wow to need procrit so late is a very odd situation, usually the numbers drop a long time ago and you take it throughout treatment. At week 44 it will take anywhere from week 2 - 6 for it to really kick in. As soon as you go off the meds in 4 weeks those numbers should rebound anyway so potentially you could set yourself up to have way too big a jump UP in hemo (what the black box warning is about regarding the drug).
I know you are feeling miserable right now but I can understand the hesitation to take it. I'm not really sure the two week benefit would really outweigh the risk of it going up too high. If you were shooting to 72 I would say definitely go for it but this late...it might be worth it to stick it out - as horrible as a 9 feels (and believe me I do know).
Even with the right dosage of Epo I really stayed at only about 10.5 anyway - so it's an awful big gamble for such short time period.
Very interesting dilema and one I have never seen here before.
It's no fun for me to not know what to do. All right, it's a self-created crisis. Why can't I be normal and have my HGB drop at the right time? Why can't I be normal and not give a s-hit?
The nurse doesn't know what to do either. She's very generous with rescue drugs but it's a quandary for her. She's worked in this field for twenty years and never came across such a nutty situation.
I'm going to put all my eggs in one spring basket and PRETEND it was a lab error until I receive this Monday's results. I can't think anymore, so I may as well live in a fantasy world until then. I'm pretty tired but heck, this is tx. I can't use the old noggin anymore.
Stacie, I hope you stay on top of your HGB situation. I think my nurse would give me extra Procrit out of her goodie fridge if I were in week 18, and wouldn't even check with the doctor. She even gave me some when I first started tx, which I still have in the fridge. Now she's not sure I should take them.
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