lower dose of riba

[jacksonpotter]

Has anyone had their dose lowered because of low wbc?  My Doc seems to think insurance wont approve side drugs.  I am trying to get her to order Neupogen.  Anyone out there taking this?  How does it work?

[alagirl]

plenty of us have been or currently are in this range anc and wbc speaking.  And we're fine, no infections.  THAT SAID, when I go into the hospital, I can't get out of there at that level without a shot of neupogen.  There is just no way the hematologists or ER staff will let me crawl out of there with type of wbc count, too much liability.  So... I go ahead and humor them since they are doing all kinds of tricks just to keep me on treatment.

Personally, I think you may need to trade docs because, no offense, but yours doesn't sound that knowledgeable and worse, doesn't sound willing to learn and try new things to help you if she's not willing to talk to your insurance company about helper drugs.  You almost can't make it through treatment without procrit at some point and SOMEONE is going to have to get it for you.  It's FAR more important to treat your low red blood cell counts than to worry about wbc's.

[FlGuy]

Depending on how it's expressed (as either 1.0 or 1000) that's the absolute neutrophil count (ANC).  Docs will intervene at different points 1000, 750, 500, 300.  Last time my doc said the magic number was 500 and I averaged about 1000 so it was never really an issues.  But, continuing interferon at dose is important.  So, there are two choices: decised that the 'do something' level  is not 1000 or intervene with Neupogen.  First time I used Neupogen and it was not aprobel for insurance or for side effects.  If the doc does not know if Neup is covered in your treatment, have them find out.

[zazza]

Correction: can't remember now if my nurse said to worry with neuts AT or BELOW 0.5.

[zazza]

I am in week 64/72:

wbc 2.9
hemoglobin 10.3
neutrophil 1.1

My hemoglobin and neutrophil count have been in this range most of my treatment. As long as the hemoglobin does not go below 10.0 or the neuts below 0.75 (or according to my nurse below 0.5), nobody expresses any concern.

[jacksonpotter]

Okay,  looking at the test.  wbc 1.9, rbc 3.07, hemoglobin 10.4, hematocrit 30.0, mpv 7.3, absolute neutrophil 1.0    How bad is it?

[nygirl7]

Don't let them decrease anything at all if you don't have to!!!!!!!!!!!  Please.  It's just crucial to try and maintain the entire amount.  

I don't understand why they aren't on the phone with your insurance company trying to get the neup to go through? At first I had major trouble getting my procrit to go through. The pharmacist was WONDERFUL and she finally got it through using Epo and instead of monthly she did it weekly - you know just technical mumbo jumbo for the same exact stuff...but it went in.

IF your insurance won't cover it but your doctor will write it - can you use the patience assistance program and get it directly from the drug company?  I know they have one for procrit so I assume they do for neup.

There ARE options but I wouldn't even think of having my meds lowered until ALL the other avenues had been closed off to me.

By the way - neuts go up and down and up and down and the one time I was going to get it my doc said nah let's just wait for a week and see..........and when I went back it was fine. Not my hemo though and that is a whole different ball of wax

Good luck.

[zazza]

Yes, it is called pegylated interferon, which means that it lasts a week in your body. The non-pegylated interferon had to be taken three times a week.

What week are you in? Have your neuts been low for long? I would not rush to get Neupogen for low neuts, since Neupogen seems to have heavy sx on its own.

If you read the link, you will see that cancer patients are much more vulnerable than hep C patients for low neuts. Still, the same restrictions are often used for us as for them. Remember, they are often sick to start with, while we very often still are healthy when we start treatment. How is your overall health? Do you know what stage your liver is at?

My ex just went through this with low neuts with his doc. I encouraged him not to lower his interferon dose until he had had another neut test done next week. The doctor encouraged him to reduce the dose, since he was afraid the neuts would fall even more. He followed his doctor's advice, only to see that this was a one time dip in neuts. The reduction probably was totally unnecessary. His neuts were at 600 week 1, 700 week 2 (135 mcg Pegasys), 900 week 3 (full dose again).

You don't get sick by having low neuts, like you do if you have low hemoglobin. The white blood cells fight off bacterial infections, that is the risk. And as I said, I believe that risk is much greater for cancer patients than for us.

I am not telling you what to do. I know too little about your situation to even say something specifically about you. Just want to share with you some of my thoughts about this issue.

[jdwithhcv]

yes, the peg shot is interferon

[jacksonpotter]

I just read that it is the interferon.  Is that the peg shot?

[jacksonpotter]

I'm sorry, I assumed it was the riba , maybe she meant the peg?  What is it that lowers the wbc?  I will post the neut in a minute.

[zazza]

Ribavarin affects the hemoglobin level, not the white blood cells. What is your neutrophil count? That is what you want to look at. If your doctor is telling you to lower riba because of low wbc, I would think twice about how knowledgeable he really is.

Jim sent me this link when I asked about low neutrophils:

http://www.hcvadvocate.org/hepatitis/hepC/Neutropenia.html

Read it. It is very good information.