Rebatol increase?

[jules173]

My doctor wants to increase rebatol from 800 mg to 1000 mg a day because he see little change in red blood cells.  I am at week 16/48 and at week 12 viral load was non-detected. Has anyone ever heard of increasing dosage?  I get pretty sick every time I take the rebatol and am worried about increasing when it seems to working at 800 mg.  On the other hand will a higher dosage be better to clear this virus..  I'm a genotype 3a, stage 2 grade 2, with viral loads at the start 4,000,000.   Any help will be appreciated.  

[jmjm530]

Jules:   I did read somewhere where fatty liver does have some imput on svr.  My g.i. said it didn't matter about the fatty liver issue, and I don't know how bad it is, I'm hoping not to bad.
------------
Yes, fatty liver does play a role. Unfortunately most GP's and Gastro's just don't have the experience and knowledge base and are often out of date. If you know a good doctor, do make an appointment, but just make sure they're a liver specialist (hepatologist) or you may end up with some more uncertain advice.

-- Jim

[zazza]

Your ribavirin dose is 14.9 mg per kilo. As I said, 13 - 15 mg per kilo is usually considered a proper weight based ribavirin dose. You are well within this range.

Your hemoglobin level is however also a good thing to pay attention to. One usually wants a decrease in hemoglobin to feel a bit more confident that the body actually is absorbing the ribavirin. This is a crude measurement method though. What was your baseline hemoglobin, and what levels has your hemoglobin been at during treatment? Present hemoglobin level?

It is a shame that geno 3s so often do not get a week 4 viral load test. This information is so important to them. How to make a decision without having all the information necessary? I agree with Jim, get a second opinion, pay out of pocket if you have to. Peace of mind is certainly worth that.

Best wishes, Zazza

[jules173]

Hi.  I did read the WIN-R study and other studies, that's why I was disappointed when the doctor wanted me to treat for 48 weeks. I'm still on the fence.  There's a doctor Roserio UC Davis here in Sacramento, Ca, but my insurance doesn't cover, which is alright because I would have no problem paying for some peace of mind.   I did read somewhere where fatty liver does have some imput on svr.  My g.i. said it didn't matter about the fatty liver issue, and I don't know how bad it is, I'm hoping not to bad.

Thanks everyone  for all your comments.  Only wish I would have join this site earlier.  Makes it easier knowing I'm not alone in this fight.  

[jmjm530]

From the "WIN-R" study:

" 48 week therapy did not improve SVR in G2/3 patients"

http://www.hivandhepatitis.com/2005icr/aasld/docs/111805_a.html

[jmjm530]

Jules,

Standard treatment for geno 3's is 24 weeks, not 48. I mentione some of the exceptions in a previous post. If your week 4 test had been positive, then that also might argue for 48 weeks, but you didn't have the test, so we can only go by odds -- and the odds are that as a geno 3 you were UND at week 4.

Given you weight, how you feel, and the fact that you do not have a lot of faith in this doctor, I would highly recommend a second opinion from a liver specialist (hepatologist). They can usually be found at your larger, teaching hospitals and worth a little travel if necessary. Also, if you want to post approx where you're located, maybe someone knows a good name. You would be doing yourself a great disservice treating 48 weeks unecessarily, and the same with increasing the riba. A second opinion should clarify. Just make sure you round up all your records -- blood tests, biopsy and ultrasound reports, etc. and bring with you.

-- Jim

[jules173]

Thanks for all the imput.   To clarify,  I weigh 118 lbs. 50 years young.  I do take rebatol with food and then  within an hour brainfog returns and fatigue sets in.  Also, my doctor who is a general g.i. did not run my viral load at 4 weeks.  His assistant apparently doesn't know how to order it and the lab did not run it.  I had to make sure when we did the 12 week viral load that she did it correctly. The virus was undetatble. His reasoning for the increase of Riba  is that my hemoglobin has  changed very little.   I am on currently on Nuepogen once a week also.  This is my first time on treatment, doc say 48 weeks is better than 24 weeks?  I would love to stop at 24!!!!  I think at this point, if the Ribavirn  is working at 800 mg why put more burden on my already tired body.   Not alot a faith in this doctor.  He calls me once a week with my cbcs, thinks I should work full time and lead a nomal life.  Thank God for my gp!!!  

Jules

[jmjm530]

A week 4 detectible might be why 48 weeks, but it's unclear from the post if there was a 4 week test. Maybe Jules will come back and clarify. As to adding riba later in treatment,  some anecdotal reports that it might help under certain circumstances. The actual role/mechanism of action of ribavirin in treatment is still not known with certainty.

-- Jim

[comeagain]

They had the same for every one regardles of weight geno 2,3 think they still have that practis in must countrys . I senced during my last tx when I founded out that I a male 90kg, had the same doses as a woman 64kg that my odds maybe wasen`t the best possible, and much more so with only that stupid w12 vl test. I even asked my doc what the point was , and he admitted that w12 test by it self  was almust meaningless. now they have started a w4 test for  g2,3.  6months after my tx they did that, bad timing for me.

[alagirl]

why, if you are 200 lbs and a guy, did they put you at 100 peg and 800 riba?  that seems SO low.  I weigh a LOT less than you and I'm female, and even with severe hemolysis they've had me on 1000mg riba and 180 peg

They have left it up to me as to whether to lessen the riba, which I finally did, but only a little, for weeks 17 and 18.

I don't get why they had you so low though?  It's almost like they sabotaged your treatment, which is upsetting, since you now have to treat for such a longer amount of time.  I can't help but wonder if you might now have SVR'd had they given you the proper amount of medication the first time around.

[alagirl]

you asked if she was UND at 4 weeks, and I was saying that I assumed that she wasn't and that was the reason her doc was trying to increase her riba, because she wasn't UND until week 12.

However, if what HCA says is true (about it not helping to increase riba post 16 weeks, then it wouldn't make sense to increase her riba now even IF she wasn''t UND until 12 weeks)

p.s. remember before I started treatment, when I used to write nice, succint messages that were legible, with correct syntax and grammar, not to mention spelling...  back then I received a lot fewer messages after my posts that said, "huh?"

those were the days... LOL

[comeagain]

What is your weight . 12week vl UND says nothing more then that u respond but over 90% of  geno 2, 3 are UND week 12 even think it was 98%.   98% dont get SVR though. The newest is that a 2week vl  test is the best at least a 4w vl test to determen if u need weightbased ribba and extended tx standard is 24w .Me my self was UND w12 and w24 but relapsed had then 800mg ribba 100 micl pegintron. Now second tx 48W tx 1200mg ribba 180 micl pegasys . my weight is almust 200lbs

[zazza]

Are you taking the Rebetol with food, preferably with some fat content in it? This usually helps against nausea. Fatigue is however a side effect of ribavirin that we have to live with. What is your hemoglobin level? How much do you weigh? If you give us your weight, we can help you look at how much ribavirin per kilo (2.2 lbs) you are taking today. Weight based ribavirin is usually stated as 13 - 15 mg per kilo. Geno 3s often get a fixed dose of 800 mg regardless of weight. However, weight based is preferable even for them, to increase their odds of SVR.

[jmjm530]

What "12 week issue" ?

[HCA]

The key role of ribavrin is enacted in the first weeks of treatment.
It is believed that the function of the drug is to induce 'mad mutation' of the virus to disrupt it's natural evolutionary defence of creating an interferon resistant mutant which will lay low and then multiply after treatment ceases.
This is the principal cause of relapse.
I do not know of any scientific principle that indicates that increasing the dose so far into the treatment could have any benefit.
Studies suggest the converse i.e that riba reduction post sixteen weeks does not prejudice SVR.
However although I know quite a bit I do not know everything,so just my opinion.

[alagirl]

the entire 12 weeks issue, I think, may be the reason her doctor wants to increase

[alagirl]

tolerated

I'm going to write a new hepc dictionary

[jmjm530]

Forgot to ask if you tested viral load prior to week 12, and if so, what were the results.

[jmjm530]

Curious why you're treating for 48 weeks instead of the standard 24 for geno 3's? Is this your first time treating or have you treated before.  If the latter, what happened and on what doses of meds -- non-response, relapse, etc? Any other negative pre-tx predictors such as  fatty liver, overweight, afro american race

-- Jim

[alagirl]

new words folks: sSVR and hemaglobing

LOL geez... I totally can't spell anymore

[alagirl]

If your red blood cell count will tolerated it, I don't see the harm in increasing to 1000mg, as it is the standard SOC for treatment.  There are studies that show that higher ribavirin dosages are associated with better odds of sSVR.

You said you were UND at week 12, but I'm guessing you weren't a rapid responder or UND at week 4?  

I just don't see a problem with doing this.  I am having to decrease from 1000mg by 200mg to 400mg per day (I'm trading off 800mg one day, 600mg the next) due to hemaglobing counts that keep going down between 7-8.  I have a lot going for me.  I was a rapid responder, I was UND at week 4 - but I am STILL nervous about having to go lower on my ribavirin)

This is just my opinion though.  Other people with more experience and time in here may disagree.