To many geno 2 and 3 relapsing... and not enough studies done.. all 2

[Mister beagle bailey]

I have found no real studies done on geno 2 and 3 and after seeing all the forum members post yesterday that they relapsed.  I thought it would be a good idea to group us together to see just how many of us there are.  This may help us see clearer what the next step should be.

Please sign in and give your stats:

Geno 2B
VL before tx: 318,000   relaped VL:  4 million
Did peg-intron 120  Riba 800  Did not lower dose durning treatment
Procrit since week 2  Did tx 24 weeks was UND still at shot 23
4 weeks post tx: ALT 13  AST 24

Thanks

Beagle

[jmjm530]

I concur with early and frequent testing. My doctor tested VL weekly until I cleared and then he suggests monthly tests. Of course, unless you have a doctor that knows what to do with the results, it's all academic.

I also agree not to weigh too heavily anecdotal relapse data you read here. On the other hand, the very same modules on Clincal Care Options did suggest that geno 3's are harder to treat than geno 2's. This point of view may be more recent than the trials the "80%" data is based on.

Also, NYGirl reports that her doctor, Dr. "J" -- suggests both geno 2's and 3's are relapsing more than originally thought. Keeping in mind this is unpublished and a second hand report, Dr. "J" is one of the leading hep C researchers in the country, so NYGirl's post did give me some pause.

If I was a geno 2 or 3 and about to treat, I'd probably bug the h*ll out of a number of leading hepatologists before making a final treatment decision.

-- Jim

[GrandOak]

Good idea,  I think because the stat's show that most HCV infections, in the US at least, are Geno 1 that the thrust of most studies has been in that arena.

The problem I've been seeing with most of these stats is that they are woefully outdated, come from studies which appear to be skewed towards geno loading based upon old stats of suspected ratios of infections per genotype, and all use extremely small sample sizes which do not come even close to representing the population at large.

I've also noticed that the rate of occurance of sx's for tx do not appear to have been studied beyond those of the initial drug trials 6 or more years ago which are documented in the Product Inserts for the meds.

All in all, it is my thinking that all these sterotypes for Hep and it's treatability are no longer valid and the stats bandied about on infection rates are woefully outdated or downright understated because of the sampling they were based upon excluded segments of the population where disease is more prevalent (i.e. incarcerated, HIV cross infected, and/or homeless populations wre not even considered).

[Tater-ToT]

Combination genotype  1a & 1b,,,
F/Age 43 when diagnosed in October 03  
Infected approx 23 years... had Little to No Liver Damage...
Treatment was "Optional" BOTH Times...
Relapsed after First Round

First Round Original VL almost 5 mill
Doc Under Prescribed Dosage (ie... only 800 per day riba)
was NOT Clear by 12 week mile marker, but undetectable by 24 week,...was not allowed to extend treatment ... stopped @ 48 weeks

Was still undetectable 10 days post tx..... 2 weeks later VL 6000....2 weeks later started round 2  vl had dropped to 1000 "on it's own"

Anyway, Round 2 I was prescribed 1200 Riba, but averaged 1400 to 1600 for the majority of TX...  Was clear at 12 weeks this time.. was SUPPOSSED To go for 72 weeks.....

Ran into a snafoo when my insurance ran out & My Dr QUACK QUACK wouldn't fill out the paperwork in time for me to get assistance from the "PEG-ASSIST" program without jeopordizing existing TX, which resulted in some exchanges that got me DISMISSED as a patient....

So I stopped in April & with "Much Appreciated Help" I managed to get in what I feel was adiquate time, (Think I got in a total of 57 weeks Maybe a few more) I Can't remember but I can easily recalculate it & I'll know for sure this Thursday!

As My Granny always said.... "Time Will Tell"

[GoofyDad]

As I see it, if you're going to treat, you're going to treat, so I wouldn't let these discussions postpone my start. I would be certain I was starting in the care of a Doc who was responsive, available, and in tune with current developments. As geno 3 I would not start on a 800 riba dose unless I was 110 lbs. And I would not be talked out of a 4 week VL.

Jim, On the weekly VL, I'm curious how it would have influenced your treatment had you cleared on say weeks 5 or 7, as opposed to clearing on week 6?

[jmjm530]

Could be, but you'd need more studies and data to corroborate -- and it wouldn't necessarily mean you'd have to be non-detectible earlier than week 4, but just have a  viral response correlating to data that probably doesn't exist :)

Like your GI, I think the  fact that you were non-detectible at 4 weeks sounds promising, and a 24 week course sounds as reasonable as anything else. All the best luck.

-- Jim

[jmjm530]

Firstly, there are several reasons my doc does weekly VL tests until non-detectible. First, he frequently double-doses peg, and I believe his protocol is to go back to single-dose after a negative VL. And second, to help determine treatment response/length.

As to your specific question, I first have to add that my numbers are a bit complex as my tx was somewhat unathodox.

The first week I did 180 Peg and 1200 riba. At that point I took my first PCR which was 16,000 IU/ml, down from 1.5 million. That's practically a 2-log drop right there in one week. Super responder by any standards I would think although there really are no standards for 1-week PCR's :) Had I known the result of that test right away, and had I known what I do now, I probably would have continued with 180 Peg and 1200 riba.

However, it took over a week to get those results back, so before that, the decision was made (this was a new doctor) to double-dose the Peg (at my prompting) and also at my prompting to  to increase the riba to 2000mg/day. My week 2 VL was non-detectible but only to <600 as I didn't know enough at that point to request a more sensitive test. My third VL (week 3) was 18 IU/ml. This is about the time I crashed and burned and ending up in the ER with anemia. I therefore went back to single-dosing and actually stopped all riba for around a week. My next PCR (week 4) jumped to 53 and went up to alittle over a huncred at week 5. By now I was getting worried that I was having a viral breakthrough. Fortunatly week six was non-detectible and remained as such until six weeks post treatment with frequent VL's along the way.

Looking back -- and this is only speculation -- I think I would have gone non-detectible as early as week 4 had I not stopped the riba, even if I did normal peg and riba dosing. I attribute the upward two-week blip in VL to stopping the riba. Of course, I could be dead wrong about this and maybe my VL curve is just a normal variance that frequently happens, but we just don't know it because VL isn't usually tested that often.

Anyway, to try and answer your specific question again, I don't think my tx decision would have been any different had I gone non-detectible at week 4, 5, or 7, as opposed to week 6. Given my VL results, I think I would have been considered an RVR in all cases. I ended up consulting 3-4 doctors on tx length, and all except my doctor recommended 48 weeks based on my genotype (1) and my RVR. My doctor suggested 54 weeks (1 year after clearing) based on my age and histology (stage 3). I decided to err on the safe side and went with my doctor and the 54 weeks.

Looking back, I sometimes think 24 weeks might have been enough but as a stage 3 that decision might have been a bit maverick.