Doctor wants to lower riba again….was 1000 mg, then 800 mg, now said 600 mg ?! But I am afraid to !

[GINGERPAL]

I am Genotype 1a.  Biopsy Grade 2 Stage 2.   ILB28 is TT.  Female,  Weight ~ 116 lbs.
HGB is low – weekly cbc's:  most current on 12/14 was 8.2, and previous weekly were 8.1, 8.4, 8.3, 8.5  
Been on weekly dose of  40,000 ml procrit since 11/15.  
Riba was reduced to 800 mg from 1000 mg on 12/9/11.
Today doctor said I should reduce riba to 600 mg from 800 mg – but I am afraid to.
This is my second time treating.  My last day of incevik will be 12/20 – I thought I would continue the 800 mg of riba and see what I feel like after I stop the incevik?
Below are my VL results.
Any thoughts?  Thanks Ginger.

Current triple tx info:
VL prior to starting triple tx was 1.79 million or 3.12 million (see below).
Viral load test  using Quest Heptimax (Hep C Viral RNA, Quantitative TMA  (<5 IU/mL)
6/22/11 vl (pre-tx) was 1,793.525
9/23/11 vl (pre –tx) was 3,122,098
Started triple tx on 9/28/11 with incevik, ribavirin 1000 mg/day (changed) and pegasys 180 mcg/wk.
Viral load results with incevik triple treatment:
1 week (10/5/11) was 129.
2 weeks (10/12/11) was UND.
As of today I am still UND.
Doctor said I should treat for 48 weeks.

First time I treated was Jan 2008 with Pegasys 180 mcg and Ribavirin 1000 mg daily.  And had a pre-tx VLl of 2.8 million IU/ml.   My 2008 viral load tests were done using HCV QuantaSure Quantitation (down to < 10 IU/ml).
2 wk VL  was 136,000 IU/ml
4 wk VL was 10,900 IU/ml
8 wk VL was 270 IU/ml
12 wk VL was 20 IU/ml
16 wk VL was <10 IU/ml/UND  (less than 10 IU/ml indicates either complete absence of HCV RNA or in rate cases, low copy of number below the detectable limit of the assay).
But STOPPED treatment as I was told I had a low chance of SVR.





  

[roostermom]

I am afraid to make this post because I am sure to get some negative feedback, but I upped my ribo to 1200 from 1000 during the last 5 weeks of treatment. My hgb was not dropping below 9.3 and was pretty steady at 9.8. I don't ever want to do this again and wanted the most bang for my buck. The first time I treated I did 1200 for 48 weeks. This time they started me on only 800. Then at the 12 week apt, the doc asks wether I have been on the 1200.( I usually see the PA during treatment) I tell them that they only wrote the perscription for 800. I even had the pharmacist said it seemed like a low dose. At the 12 week mark he moved me to 1000, but I moved it to 1200 on my own.

[GINGERPAL]

I did not explain my hgb properly - my weekly hgb has actually went from (oldest to present) 8.5 to 8.3  to 8.4 to 8.1 and most recent on 12/14 was 8.2 .   And that is with 5 shots of procrit.   i will do procrit shot 6 on tuesday and get next cbc on wed.   I decided to try  to keep riba at 800 mg until i see wed's cbc.  sometimes i wonder if i should reduce the riba to the 600 mg - i am dragging and can't do a thing.
i also question the 48 wks of tx....i think they are also taking into consideration my starting high VL and the TT gene.  
in 2008 i was told i would have had to treat for 72 weeks and had a low svr rate, so decided to wait for new drugs.  thanks.  ginger

[frijole]

Well, I will weigh in on the side of not reducing dose for two reasons.  First I think it is possible that the Procrit is just now kicking in.  With me it took 4 weekly shots of Procrit before the hgb increased at all (I am on VIC).  I think your increase from 8.1 to 8.3 to 8.5 is probably the result of the 11/15 riba dose reduction.  Therefore if you reduce dose now and procrit is just kicking in, it might be more than you need to do.  Especially since you will be done with the INC in a few days.  

Since you were UND at w2 I don't think the dose reduction will hurt, based on the study data.

Now what I don't understand is why they stopped your treatment in 2008 at week 16.  That w12 viral load was not good but I am surprised they pulled you.  It may not have made any difference but I am wondering why they didn't suggest extended time.  You were clear at 16.   First time around I had VL of 40 at week 12 (by QuantaSure) so I can relate.  First sensitive test UND was week 20.  I did 56 weeks and relapsed so have always wondered if 72 weeks would have done the job - maybe not.

The other thing I am wondering is why 48 weeks now?  You are a relapser with a biopsy of 2/2 -- and should qualify for 24 weeks.  I guess they are calling you a partial responder but it seems like you were UND at 16?  

frijole

[belle19]

ginger,  just wante to wish you good luck with everything.  i also just got my riba reduced to 600 and it's not comforting to me.  we all want to slay this dragon.  best wishes.  belle

[GINGERPAL]

thanks all.    i appreciate and respect your comments, and agree.   but  this is a hard one for me....don't know why i am being stubborn.   well, i am tempted to wait till wednesday which is the day of the week i get my cbc done and see if hgb has changed - and if it has not, i may have to bite the bullet and reduce the riba again.   in the meantime, if i start to feel that my low hgb is getting to the point of possibly being dangerous, i will not hestitate to reduce it.   thanks again...ginger

[lapis]

I love to see the banter and exchange of thoughts and ideas.  You guys make me smile : )

And Will, I know, your answer surprised me, so I had to say something!!

Hi Hector!  

Lapis

[working dog]

i was put on 400 after incivek..hgb tanked...then went up before my doctor told me to...was at 800 doing ok and then bumped it up to 1000...tanked again...i should have listened to my doc but thought i could handle more...now of a lot folks that started tx after i did seem to be reducing riba no problem..i would try to avoid a transfusion...my transfusion was ok...nothing like i thought though...soon tanked again...i think your doctor is right..i had a hell of adjustment after stopping incivek...mentally felt way better but hgb didn't do good......good luck....billy

[crossroadsec]

Nygirl is my hero. She's got the years... And the wigs to prove that hanging in there can be worth it.
@ Hextor - Boom! Crash!

[can-do-man]

Not going to touch the dose reducing, but i do question the reason to treat for 48 weeks....... Hmmm, i'm suggesting shorter tx time???

[willbb]

Poor Will. Give the guy a break.
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Thx. H....intesting enough I have always touted the studies .that said reduce with no diff. in SVR..This one time I thought .hmmm maybe the OP can hang on....

Got straightened out..real quick by the good folks here  :0)

Hope you are feeling ok and  positive thoughts to you always..
Will

[HectorSF]

Stole my thunder...

Poor Will. Give the guy a break. I feel sorry for Will like I feel sorry for Will Gardner on "The Good Wife". Not sorry but jealous. ha ha

Hector

[crossroadsec]

BTW - I got a transfusion n then procrit n remain UND and hmg is almost 10. Full RIBA now! Just my experience, if it helps. Woohoo! Karen :)

[crossroadsec]

It was hard for me to reduce RIBA just a few weeks into tx. But my Dr was right and I found (Hector found) lol, stats to prove reduced RIBA works n doesn't effect SVR.  Check this out. And good luck! Karen :)

http://www.fda.gov/downloads/Drugs/DevelopmentApprovalProcess/HowDrugsareDevelopedandApproved/ApprovalApplications/TherapeuticBiologicApplications/ucm094467.pdf

[screaming48]

my riba was reduced to 400 and I was still und at 4 and 12 weeks and my hgb is in the low 8s. But I had never treated before. I would listen to your doc. just my 2 cents worth :)   anne

[flcyclist]

lol, this is one of those hard calls to make and hear you on the trt history.

[willbb]

Hey  D
I don't agree with Will either (hi Will) lol.  Although I do 99.9% of the other times.
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I know I will be forever remembered for this .1%   LOL

[willbb]

For once I will respectfully disagree with Will (hi Will!).  
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Hi S   .hehe  that is certainly allowed. When I posted that I had reservations,however seeing as she only had 5 days left of Inci I thought if her HGB. had been holding for the last month then  maybe hold the fort with the 800 and see however I certainly can not disagree with the reduction either...I am just nervous for her as she is being still at week 11 and a re-treater and a TT...but as you know I usually say listen to the doc....

Will

[flcyclist]

Oops, missed that.  I don't agree with Will either (hi Will) lol.  Although I do 99.9% of the other times.

[flcyclist]

Yep, agree with Will and desrt. Your doc is making the right call, imho  If the doc recommended to stop Riba completely, then I'd be jumping.  Hopefully your Hgb rebounds some with this slight reduction and maybe even more after you stop the incivek.  This is almost week 12 with a 2 week UND and you're looking good.  Those low 8's must be tough to deal with, not sure how you do it.  Best of luck to you.

[lapis]

For once I will respectfully disagree with Will (hi Will!).  I took Inc in a clinical trial.  No rescue drugs were used but Riba was dropped to 600mg when hgb went below 10.  My tx was 24 wks and my Riba dose was reduced for 7 of those wks in total (starting at wk 3!), as my hgb did continue to fluctuate even after the Inc was finished, likely because I pushed to get back up to the highest Riba dose.

Anyway, in the trials they found that Riba reduction treated the anemia and did not affect SVR rates.  The problem is that with SOC it's important to be on the highest possible Riba dose and none of us wants to have it reduced.  But a very low hgb carries it's own potential complications.

So my opinion, do as your doctor says.  I felt like crap at hgb < 10, I don't know how you are making it with hgb in the 8's.  Wishing the best for you.

Lapis

[desrt]

My understanding is that rba does its most important work during the early part of tx. At 116 lb. 600 mg is still a respectable dose.

[desrt]

Just my opinion but I'm with your doctor on this. A 2 week UND gives you a wonderful chance of success despite the TT - if you can stay the course. Remember that the use of PIs has doubled the % of people who have to be pulled off tx altogether (from aprox. 4% to 6-8%). I understand your reluctance to dose reduce. Best of luck with your decision.

[willbb]

Hi Ginger..

– I thought I would continue the 800 mg of riba and see what I feel like after I stop the incevik?
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Seeing as  you only have 5 days left on Inci. and the procrit seems to be keeping the HGB. at low to mid 8"s  maybe this is not a bad idea and see what happens ..that is if you are functioning alright and  the doctor is not recommending this because of an underlying condition.
Hower it is protocol once HGB. is <8.5   to keep reducing ,so be mindful

Good luck..
.Will