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Avatar universal

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

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.

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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
38 Responses
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Avatar universal
Yes I am a 3a and I relapsed. I too dug around to find pertinent studies. I was suprised at the lack of info available and resigned myself to use geno 1 material as none seems to exist for us. I guess with "new" diseases this happens. I imagine having a rare type of cancer or something is similar in that not enough people have had it to be able to look at previous data to help your treatment. I figure I am better off than many with rarer conditions but it is frustrating when trying to plot a course of action.
Helpful - 0
108191 tn?1199599905
Thank you for responding to me email.  I have read so many threads and folks with different genotype, I can't remember who is what.  Are you a 3?

I do feel like a step child, as there are no studies to help us.  Your suggestion of watching the overseas studies is a great suggestion.  If I do not get an SVR in Oct.  then I have to look for another answer.  There are not many to choose from here in Seattle, (sure wish I lived in NY).  I have to think about what to do next.
Helpful - 0
148588 tn?1465778809
The study was something I read at hepcassoc.org but their med article archive has gotten so full some stuff has been deleted. I'll keep looking.
Helpful - 0
Avatar universal
Thanks for that information jim, i seriously thought that because i took the losec during tx that it had an affect and was partially a result of my relapse.  (trying to find a reason)
Being a geno 3 I really thought I had it beaten, still in denial i suppose.

Linda
Helpful - 0
Avatar universal
Losec (Omeprazole) goes under the brand names here as Prilosec or Nexium. Losec is a PPI (protein pump inhibitor) and is OK to take with ribvirin. What you want to avoid are antacids like tums, maalox, rolaids, Gaviscon, etc. If you take any of these, best to space them 2-3 hours away from the time you take the ribavirin, if you want maxium absorption. H2 Inhibitors like Zantac 100 are also OK to take with ribavirin and can be taken at same time.
Helpful - 0
Avatar universal
I've treated with one of the top docs, but more than once I read a paper before he did -- and especially before my NP did. Your heads-up read probably you an unecessary 24 weeks. By any chance do you happen to have a link to the study that suggests 67% SVR for geno 3's? Now that you mention it, the figure sounds familiar but can't remember where I saw it. Glad you made SVR.

-- Jim
Helpful - 0
Avatar universal
Forgot to mention that I was also taking Losec, which is an antacid, before during and after tx.  I later read in this forum that antacids actually can have an affect on tx.
If someone has more information on this could they please supply a link.

thanks

linda

Revenire, welcome to the ozzy forum, nice to see you there.
Helpful - 0
148588 tn?1465778809
in re: geno 3 falls between 1 and 2

Latest study I read on 12 week treatment shows type 2 maintaining 80% SVR while geno 3 falls to about 67%
Helpful - 0
148588 tn?1465778809
genotype: 3e
baseline vl 625,000
probable date of infection: 1973 (based on being my third bout of acute hep - doc unable to explain since I already had A&B antibodies)
treated 24 weeks: 2002-2003  46-47 y.o.
1200 mg riba/don't remember IFN dose, but was weight based Peg-Intron for 220# and do remember that I was underdosed for first three weeks due to nurse's mistake
gastro was treating all genotypes 48 weeks with as much IFN and riba as you could stand (y'all would love this guy). at week 19 I read 2002 NIH consensus report stating non-geno 1 could treat 24 wks w/800 mg riba - lowered my dose to 800 mg and discontinued at 24 weeks against doc's advice and was still undetected 2 yrs post-tx (not saying I'm smarter than my doc - I took a chance and got lucky)
I'm not against high dosing, but I think people should be aware that even normal dosing can result in thyroid damage and auto-immune problems - at least that's what the people that make the stuff say on the package insert.
Helpful - 0
Avatar universal
Geno 2 a and 2c   VL 308,000   Stage 2-3  Grade 2-3  due to start tx Sept 29.
Helpful - 0
Avatar universal
Geno 3
Fibrosis stage 2 (was 3 before tx)
Relapser
24 wks tx
tx in 2004

Was Undetectable during tx but after 6 month blood tests the virus had returned.

Here in Australia they are now suggesting that genotype 2 & 3 that have any stage of fibrosis/cirrhosis should now be on the tx for 48 weeks.
Helpful - 0
Avatar universal
As this past weeks events have unfolded and we've become aware of our friends unfortunate relapses, I considered the possiblities that the info regarding the " cure" rates from HCV that I'd heard about, might need to be reevaluated. It seems that this is no different than anything else in our HCV world. We learn as we go along, everything we think we know about HCV leads us to a new discovery and just how much more we need to re-discover. It's no different than life.......... on Mars!!!
                           Keep killin' those critters
genotype----- 2b                     Pauly
VL at start-- 1.7MM
ALT---------- 52
AST---------- 39
HGB at start- 14.8
HGB in 3 weeks 9.8
Pegasys 180mcg
Riba---- 1200 daily/ at week 5- 1000
procrit since week 4- 1ML a week
UND at week 4 and week 12

Helpful - 0
Avatar universal
I agree but the numbers dictate the studies I would think. The vast majority in the US have geno 1 which explains why most studies in the US deal with geno 1. Geno 2 and 3 are much more prevalent in other coutries so our best hope for studies are probably located there too.
It does make you feel like the unwanted step child when routinely we are told we dont "need" biopsies or when we dont acheive SVR they seem to assume an "oh well" attitude as if failing the treatment and still having the virus changes anything! That was why we treated in the first place so why dont they want to continue to try to eliminate the virus? Frustrating to say the least. I guess at that point geno 2 and 3 who are told whe tx fails need to seek out a new doctor who WILL help them in their fight. I was lucky my doctor was so supportive of me retreating. It would have been hard to seek out a new doctor at that point.
Hope all is well with you and you have a pleasant holiday.
Helpful - 0
108191 tn?1199599905
I am a Genotype 2b, had the virus (we think) for 25-30 years.

VL - 698,000 ( nine months earlier, VL 29,943 aprox.)

Liver - Stage 2, Grade 2 (or did I get that backwards?)

Had a 6 week PCR - UND, 24 week PCR - UND.  Waiting for 3 months post treatment PCR in late Oct.

Alt/18    Ast/28  after first week of treatment and stayed the same throughout

Peg - 120, Riba 800   Weight a little high (maybe should have done more riba)

No rescue drugs - HGB went from 15.1 to 11.1 during treatment.  Platelets went from 250,000 to 108,00 and went up as treatment continued.

I so agree that we need to get doctors to look at Genotypes 2&3.  Just because we are in the minority doesn't mean we should be left out of studies.  Also, I asked my NP what happens if I don't get an SVR.  She said that they don't retreat 2's and just wait and see what happens to the liver over time.  Reassuring to say the least!

Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
Helpful - 0
92903 tn?1309904711
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?
Helpful - 0
Avatar universal
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"
Helpful - 0
119874 tn?1189755829
As a geno 3, I talked with 2 doctors--1 a hepatologist at Baylor and one a GI whose practice is almost entirely HepC.

Both of them told me from the get-go that I might be looking at 48 weeks.  The local guy (GI) "consented" to 24 weeks after I was clear at 4 weeks of TX.  By the time I hit the 4th week of TX I had decided to quit if I wasn't clear (pits of anemia at that point).

Seems like you could have even more confidence in the 24 week decision if you were clear at week 1 or 2.  Arm chair doctorin', I'm doin'.
Helpful - 0
Avatar universal
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
Helpful - 0
92903 tn?1309904711
Couldn't agree more. The majority of 2's and 3's will clear by week 4. If not, I'd take that as a warning sign. I'm surprised protocols haven't yet evolved to the point of modeling customized treatments based on weekly VL's. Current we see VL's at 4, 12, and 24 weeks. Why not weeks 2 and 3 for genos 2 & 3? Unless they start by collecting the data, they'll never be able to study the response curves. My 2 cents, FWIW.

Personally, I don't think it's a great idea to form much of a judgement by a small sampling of we folks in this forum. There simply aren't enough of us to make a statistical basis, IMHO. I think it's great to share info, but I wouldn't let it color my view of the landscape too much. Give me the peer reviewed studies, with helping of Drug Co conspiracy theories on the side.

Me:
Start
47 yo M
5-9 170 lbs
VL 1.2 mm
Grade 2, Early Cirrhosis
ALT/AST ~150/~150
Kinda dorky looking

26 wks Peg/Riba 1,200
Procrit/Neupogen

End
47 yo M
5-9 160 lbs

ALT/AST ~150

26 wks Peg/Riba 1,200
Procrit/Neupogen
ALT/AST 21/40
Kinda dorky looking
Helpful - 0
119874 tn?1189755829
On one of those recent clincial options modules, there are some nice graphs showing that the earlier you respond to treatment, the more likely you are to SVR.  It was true for 2s and 3s as well as 1s.  

Since most 2s and 3s clear fairly early on maybe it would make sense for us to have a PCR even earlier in Tx..
Helpful - 0
Avatar universal
This is a good idea.  I tend to agree with Goof and Jmjm.  I mean 80% is better than 50 but still that means 1 in 5 or so will relapse.  That is A LOT of people.  Too many as far as I am concerned.  Anyway, here are my stats.

I am a geno 2
I can't remember exact VL at start but greater than 4 mil
clear at week 4
on 800mg riba to start
1000 at week 10
completed 20 weeks of tx
clear 3 months post tx.
Helpful - 0
Avatar universal
My doc (Alan Kilby) does weight-based Riba.  I asked about 800 for geno 2 and he said he does weight based.  I was about 210 at the time, so it was probably better that way.  
DJL
Helpful - 0
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