low hemoglobin

[chelsee75]

I just read that somehere and it made me very happy 

[firefly326]

I'm into the 11th shot and going into 7th week of Victrelis and my hgb went from 10.6 to 9.3 in the past week which surprised me because I had slightly more energy and breath than before that so thought things had improved rather than not.  The PA said if it dropped below 10 to reduce riba to 3 a day and add procrit.  It has been reduced from 5 to 4 already.  Like many other people I don't want to compromise tx success and would not reduce riba more if possible because the sides have been tolerable.  Would it be foolish to wait and monitor it another week or so before changing dosage and adding another drug?  So far treatment has been so effective - alt normal for the first time in 12 years after only 2 wks of peg/copeg then UND at 4 wks before Vic and at 8 wks after adding Vic so I sure don't want to rock the boat.  This is my first treatment - no other health issues.  How low does hgb have to get before it's damaging?  Is riba reduction impact on treatment outcome the same for both Vic and Incivek?  9.3 isn't low compared to what many of you have been through.  Thanks if anyone has thoughts about this.

FF

[DougV]

FF,

It isn't unusual to feel better even though numbers have degraded.  You adjust without realizing it and that is not uncommon. 

I know that some people think the reduction doesn't hurt.  Be that as it may I think we can state as a fact that not reducing does not hurt chances of success even the tiniest bit. 

Still hard to make a suggestion one way or the other.  Procrit does not work over night, takes two weeks generally to have any effect and a month for full effect.  This is due to the time it takes the body to produce red blood cells.  Likewise dose reduction is not always immediate in effect.  Generally seems to take a week or two, sometimes three.  Point only being the longer you wait before complying potentially the lower it will drop.

You do have a way to go before the danger zone, assuming no other internal issues and good health, sadly though somethings remain hidden so there is no guarantee here. 

If I was you, I'd call my PA and talk to them about your concerns.  You could start Procrit immediately and it would probably begin having effect before you drop to dangerous levels, assuming it even works which it often does not.  Or you could postpone Procrit and reduce dose now and see what happens.

Doing both is your safest option, but yeah there is that reduction again.  Another alternative would be to ask if they would consider transfusion if you drop low enough.  Or if you are insured, you can usually get into a hematologist/oncologist really quickly.  Go see one for consult, they are the real experts in chemical suppression of blood components.

In direct answer to your question, yes you could probably wait a week BUT if it continues to fall, and it likely will, you could render dose reduction and/or Procrit injection a day late and a dollar short.

Doug

[chelsee75]

UPDATE: I saw my doctor today. They gave me a shot of procrit and are continuing with ribo reduction for another week. Blood tests today did show my HGB did drop lower from the 8 it was last thursday but I dont feel bad so they will wait another week to see if I need a transfusion.

[alice]

Glad to hear you're doing OK, Chelsee. Hope the Procrit works quickly for you. Took me about 6 weeks to get above 10 Hgb then after awhile (after i finished the incivek) i started tapering off the Procrit. I got to resume my full dose riba after a few weeks and was eventually able to cut back a bit on the Procrit, too.

Hope this approach works out for you too.

alice

[firefly326]

Doug - Thanks so much for the input.  I called the PA and she said it's ok to do the procrit, not reduce the riba and we'll see how that works first.  Will start procrit on Thursday then do the interferon shot Friday night unless you think that is too close together in case of side effects.  The PA said to take the shot in the morning and I will do that unless anyone has suggestions on fitting it into the med cycle.  It's reassuring to hear how everyone here is doing things though because all of you have first hand experience of hcv as well as the effects of the treatment drugs.  Thanks so much for being available and for the time you spend making information accessible to all of us.  Hope the day is sweet for all ..... FF

[alice]

The PA said to take the shot in the morning and I will do that unless anyone has suggestions on fitting it into the med cycle. 

Firefly, if you are only injecting interferon and Procrit, doing your Procrit shot in the morning is fine. I suggest not doing it on the same day as you do any other shots. Since Procrit takes a few weeks to work, you should not have to adjust your lab scheduling, either.

If you are taking neupogen, it gets trickier timing the other shots and when to go to lab. Rules of thumb--- don't do two shots on same day if possible (avoid feeling sicker) and don't go to lab within 24 hours after doing neupogen.

here is a thread with Procrit/Neupogen questions http://hcvsupport.org/forum/index.php/topic,3438.msg44400.html#msg44400

alice

[chelsee75]

that procrit shot hurts like a youknowwhat!! LOL Just thought Id throw that in there. 

[firefly326]

Thanks, Alice.  I'm on for just interferon and procrit and it works out with the lab schedule for every Friday usually late afternoon.

So many of you have been through such long journeys -  so I can handle it this too.....

Chelsee - Yow....I'll get my frozen peas ready and do some extra numb prep!  Thanks for the warning.

Great day to all!

[snapplecandy]

that procrit shot hurts like a youknowwhat!! LOL Just thought Id throw that in there. 

Tell them to inject slower and warm to room temperature. The sides of the stomach dont hurt as much. I started dropping fast myself early on and was getting both procrit and neuopo by my 4th week if I remember right. procrit just didnt do it for me as I think the incivek was just driving it down too fast. I dose reduced from 1000 to 800 in the first month and stayed there. I agree below 600 on riba is pretty low.

I finally went for the transfusions. After my first one, i decided I liked the quick pick me up rather than procrit taking forever and giving me side effects. The infusion room at the hospital was comfy, had tv, and room service (great food) from the kitchen. I made the best of it and met some nice people whom were way sicker than me. I celebrated news eve day with a blood transfusion and my last shot of interferon. Im still below 12 (HMG) and progress upwards is slow but I am bouncing back. My labs were being drawn and monitored by my hematologist (I suggest getting one) weekly, sometimes twice weekly. You can make it thru with the right monitoring and good side effects management. Hang in there.

[lynn]

Aching legs and anemia were my two biggest problems with the treatment. I lost weight on the first round of treatment and on the second round they lowered the ribavarin and interferon (after I asked them to recalculate). I think that ix why I got so anemic that first go round because I lost so much weight but the dose was not lowered. Just my uneducated guess. Anyway, with the lower doses I did beat the virus..so it is possible. And yes, I did find some of the weight back..not all but whose complaining right? (smile).

[chelsee75]

thanks lynn cuz my biggest fear is the lowering of the riboviron will will lower my chances. I have actually gained weight from eating 20 grams of fat with the incivek. bleckkkkk