Procrit vs Lower Riba dose

[shanro]

At week 6 I felt horrible after feeling pretty good for the first 5 weeks... My blood count was as follows:
WBC 5.4
RBC 3.42
HGB 10.2
HCT 31
Platelet 182

My doctor decided to drop my Ribavirin down to 800/day from 1000... Will this make a difference?  Should I speak up and be my own advocate here and insist I remain on 1000 and ask to have my CBC done weekly to make sure we can intervene with Procrit if and once I drop under 10????

[shanro]

So it's been 2 weeks since the dose reduction and my hgb went from 10.2 to 10.6... i feel barely noticably better but i have an appt with my dr on monday and think i should really push the procrit... is a 0.4 raise much of a difference????  or is it more like it's staying the same?  what's would a 2 week significant difference be?

[ninjamonkey]

I'm really worried now my Dr last week saidthru favor dose reduction over procrit I am die to start treatment in like 6 weeks but now I'm thinking in gonna ask them more questions and push the issue on me not doing dose reduction if it comes to that and if they say that is the only way they will go I'm guessing that means I'm looking for a new doctor?  OMG!

[Roberttherock]

Like I said I was very surprised at only taking 800mg.  In fact I was not feeling confident before the 4wk blood work.  I in no way tried to get by with a low dose.  I really can not argue with him at this point.      

[ann61]

I agree with nygirl.  I wouldn't reduce the riba.  In fact my hgb is 9.4 and although I am tired, my doc doesn't believe in dose reduction.  Although she would prescribe procit if I wanted it, she prefers to wait on that as well.  She definitely would prescribe procit over dose reduction.

Good luck and be your own advocate!!

[frijole]

shanro
I hope you are able to get the procrit.  We talked about dose reduction vs procrit before I treated so my doctor knows how I feel.  However we shall see what the reality is come the time.

roberttherock -- I don't understand that riba dosing at all. You mean to say you started at 800? That doesn't meet the labeling guidelines.  I don't have the label handy but isn't it 1200 for over 75kg (=165#)?

http://www.hepatitis-central.com/mt/archives/2008/01/weight-based_ri.html

They enrolled 5,027 patients with hepatitis C from more than 200 centers around the country. All participants were 18 to 70 years old, weighed less than 125 kg, had detectable HCV RNA in their blood, and had never been treated for it. They were randomly assigned to receive interferon and a flat dose of ribavirin (800 mg/day), or interferon and a weight-based dose of ribavirin, which started at 800 mg/day for patients weighing under 65 kg, and increased by 200 mg/day for up to each additional 20 kg of weight up to a maxiumum dose of 1400 mg

"A sustained viral response was achieved by significantly more patients who received a weight-based dose (44.2 percent) than fixed dose (40.5 percent) ribavirin," the authors report.

[Roberttherock]

I understand your concern about your Ribavirin dose.  I am 190 lbs and my Dr. put me on 800.   I was very worried about how it would effect the outcome.  I went through the 2comb twice taking 1200 without any complications.  I am on my 6th week on Incivek.  I was undetectable at week 4.  I have to this point experienced less as far as side effects than on previous tx. Actually my shoulder, hands legs and back have been stiff with what I thought was arthritis.  I have been pain free since week 1.   I have some anemia but not a problem.  I wonder if I finish the 12 weeks and am still und.  if I should as the doc to increase my dose to 1200 just to improve my odds.  Without the Incivek I should be able to tolerate more ribavirin.  I am not sure if it would be worth it.

[shanro]

And thanks everyone for your input! I really appreciate it!

[shanro]

frijole - thank you for that article!
I called my drs office earlier... Btw she's an HCV specialist not a GI... The nurse told me that they do this all the time... She's been doing this for years... They don't have personal evidence to suggest I'm right (i tried to sell it to them based on logic, not internet because I figured they'd discount that)... And blah blah blah... I've now gone 2 days with the dose reduction and I don't like feeling like it's a mistake... I'm about ready to take another riba now and continuing with 1000 tomorrow... But that would be considered AMA... I'm gonna print some stuff out and bring it to the office tomorrow... if anyone else has some good links that a dr. would consider valid.. Please share... In the meantime I'm gonna do some research...

[frijole]

http://www.natap.org/2002/AASLD/day3.htm

After 8 weeks on EPO, patients were on average taking 940 mg/day of ribavirin vs patients not receiving EPO who were taking on average 857 mg/day of ribavirin. This data finds that patients were able to maintain ribavirin dose rather than decreasing dose due to anemia. Study investigators reported that patients taking EPO reported improved quality of life as measured by physical, mental, vitality, and mental health parameters. And hemoglobin increased from 11g/day to 13 in the patients taking EPO after 8 weeks, patients not receiving EPO had hemoglobin levels of 10.6 g/day. This addresses development of anemia. These benefits may improve adherence and sustained responses...

You might print out this article and take it to your doctor

[frijole]

I think you are right about the doctors making the assumption that the insurance company will not pay for it.  I also think there is an issue because the labeling information for ribavirin refers to the dose reductions but not to using epogen.  I do think insurance companies have an issue about what code is used to rx the procrit.  I think the hemotologist I used last time used some kind of oncology code that got it right through with no questions.  I am not sure I will be so lucky when I need it this time since the hepotologist is monitoring all the blood work.  THank goodness the labeling information for Victrelis does indicate that epogen can be used.

You are probably right about not mentioning an online support group but everyone does online research now a days and you could print out some of that information.  I will see what I can find.

frijole

[working dog]

thats right what nygirl says about telliing the doc you get advice from a support group on the net...they hate that....i wish the first time i asked for procrit i didn't say anything about my internet friends giving me the heads up on it...my hgb dropped from 14.5 to 12.7 in the first two weeks then in 6 days went to 9.8...i knew i was in trouble...i could feel it...asked on the net and was told to take procrit...i asked for it but didn't get it...then my hgb kept dropping..i was taken off riba..then a week or more later got on the procrit...at 4 weeks i was detectable....not much but was...i wish i had gotten on the procrit as soon as my hgb dropped fast to 9.8...oh well...good luck...billy

[elpasolady]

I tell my Dr all about my internet support group and she listens to me.  She knows I am learning more than she is, at this point in time.

FYI....I asked her about Procrit vs dose reduction.  Her answer was that she will always go for the Procrit first, but the problem is that so many insurance companies will not pay for it.  So, I am wondering if some of these Drs that are dose reducing are just doing it because they know this as well and just take the easy route first.
Just a thought......

[nygirl7]

Oh PS Dont tell the doc that people on the internet told you about Procrit that makes their head spin around.  If you have to say something just say support group - believe me it will be worth the white lie not to be laughed out of the office (as I found out the hard way, but my doctor learned in the end that we did know more than he did about a lot of this stuff!)

[nygirl7]

Some GIs just dont know as much as we do about this stuff unfortunately so definitely it's worth being your own advocate. Nobody cares as much about it as YOU since you are suffering through it.

If he still insists on not giving it to you, find a hematologist who will understand more about hemolytic anemia.....you could very well be underneath the 10 now and it takes a few weeks to 'kick in' so you need to do something asap.

[paen53]

I agree with nygirl about the Riba reduction so early in the game and before you're UND. I would push for Procrit IF it's warranted with a drop below 10. Since you're pretty close, I would try to get all the proper authorizations ready to roll, so there are no delays if you need it down the line.

Good luck to you! Pam

[shanro]

thanks... i think i'm gonna call my doctor... I dropped 4.9 log in 4 weeks which fortunately put me under 1000 but unfortunately not UND so it scares me that a risk would be taken like that... she told me that there's no evidence that a 200mg drop in Riba would affect my treatment significantly but that comment didn't make me feel ok about the decision... i'm feeling tempted to go ahead and take the full amount anyway but i also don't want to be my own "prescriber" either...

[nygirl7]

I'd opt for Procrit this early in treatment, dose reduction should be a last resort always as it can give the virus a chance to beat it's way back in.

Procrit is a miracle drug but must be monitored so you don't go over 12.