Hepatits C-genotype 2 relaspe

I just came from my doctor's office. I have Hep C genotype 2b. I finished up 24 weeks of treatment in March. Had my first PCR test last Monday 6/12 and found out today that I have relasped.  My doctor really has new clue what to do because there are not enough studies with people with genotype 2 who relasp. I am his first patient in 20+ years with my type to  relasp. If I was genotype 1 they would re treat wit different meds. I don't care that there aren't enough studies. I don't want to wait 3 to 5 years for the next round of trearments to become available. I have had this since I was 18 and I am going on 40. The fact that it came back so quickly after finishing treatment scares me. Why should I wait? Does anyone have any info on genotype 2 relapses and treatment options or opinions? Please help!!!!

[jmjm530]

Sorry about the relapse.

Based on what you said, I'd make an appointment with a liver specialist (hepatologist) who has more experience treating geno 2's that relapse. You can usually find hepatologists are your bigger, teaching hospitals where they tend to treat larger patient populations.

You mentioned "relapse". I'm assuming then that you had a sensitive viral load test (under 50 IU/ml) at end of treatment?

All the best luck.

-- Jim

[Ladyfhattcatt]

My viral load at the end of treatment was undetected. Now just 12 weeks later it is detected again. Low but detectable. 320million according to my doctor. I am going to Johns Hopkins Hosp. in Balt, Md next week but the doctor I am going to see is a collegue of my doctor and they have already talked and according to my doctor, they aggree with each other. Wait. I DON'T WANT TO WAIT!!

[Upbeat]

320 million ?  Are you sure?
                                                     Ron

[NYgirl]

320 million? aND YOU just RELAPSED? Are you sure that is right? That sure isn't LOW at all!

There have been a couple of 2s and 3s in here who have relapsed recently.  Several 2s as a matter of fact.  While the odds are GOOD it's only really an 80% which DOES leave 20% margin of relapse.  Small but somebody has to be it. I'm shocked your doctor has no game plan?

You need to find a specialist who will give you another course of treatment (or different etc.) as you surely responded the meds WERE working but when you stopped taking them it came back. Perhaps with a longer course or different Interferon you can beat it.

I would seriously question the 320million number that just doesn't sound right to me at all - it certainly isn't LOW at all.

[52TELE]

Jim , or anyone else , can you tell me what the latest numbers are for HCV  geno 1b that clear and remain clear after
pegintron/ribavirin tx for 48 wks?

[Kalio1]

Sorry about the relapse, I know the feeling. I am a 3, I relapsed also. What I did was, a. increased dosages and b. extend treatment onger this time. That usuay does it for 2's and 3's. I was told 2's have an even higher sucess rte than 3's when retreating. You need to find a dotor that DOES retreat as amatter of course. It seems they fall in one of two camps, one: treat, if it fails, give up or two: if it fais, retreat with more meds and for longer, usually for 48 weeks. I chose door number two, and I am treating again. My doc was onboard with that camp, thankfully. Find one that will help you, they are out there.

[rochammer]

Hi Ladyfhattcatt

I am a genotype 2 - relapsed too I did 24 weeks and relapsed 3 months post treatment. I am now on shot 35 of the second round of treatment of 48 weeks. There is no information about geno 2 relapse tx. My doc talked to Shiffmen a top doc he said 48 or 72 weeks for us. So much for easy to treat! But if your heath is good you can treat again for 48 or if you can stand it 72 no need to wait .

My stats
I am 56 male geno 2 stage 3 vl 2.5 iu/ml did 24 weeks of Pegasys & riba clear during tx and 1 month post. Relapsed around 4 months post alt180 ast 118 on tx alt& ast were in the teens 8,14.

Six-month pcr pos.12.5 iu/ ml I am now on week 35 of 48 undetected at week 4 & 24. I am on epo but in good shape and no other health problems. The sides are very bad.

Please feel free to ask my any thing you want I know how you feel.

Roc

[Kalio1]

Yeah, so much for us "easy to treat" 2's and 3's. I wanted to add that I too relapsed and I too followed the same regimen as you described in your post. Hope it works this time, I am doing 72 overall, 24 first tx, 48 this time.
Even the "low viral load" that my doctor thought was such a great thing and that didn't end up being true and not being a geno 1 didn't help me a bit either!
The lesson I learned is regardless of what geno you are, there is no "easy" way to rid yourself of this and there is no "easy genotype"
Sure, overall the stats show more 2's and 3's clear but that doesn't matter when YOU are the one who relapsed.

[cuteus]

what was the biopsy stage in your case? I read that most of the relapsers, especially late relapsers, have more fibrosis or cirrhosis. Sounds like you might need a new GI, preferably with experience in hepatology.
good luck

[FlGuy]

you, Lady, Kalio, many others and I in the same boat.  When you re-tx'ed did you change anything?  Different peg, different riba dose? did you need procrit in tx #1?  Thanks.  G3, relapsed after 24 weeks.

[Ladyfhattcatt]

I want to thank everyone for taking the time to respond. Maybe I am saying the wrong thing when I gave my viral load but the number was 320 something? I am going to see a doctor at Johns Hopkins Hosp., but again My doc referred me to him. They are collegues. I also took it upon myself to make an appt with another G.I. before I return to mine. Again if I was genotype 1 he would have automattically just began tx with different drugs instead of making me go through all this bull and waiting.

[lilmoma]

I am so sorry you got such bad news. I always thought the 2s had it easy too. Guess that shows you how little I know.
Keep us updated on what your 2nd opinion says, and what you decide. Mean while, this is certainly a good place to come and vent!!!!

[tulsatime]

hi I guess there are a few of us here geno 2's I relasped too. I am female 42 yrs old viral load started at 3 million.Clear all through treatment. My doctor waited 6 mo after treatment to retest I was 3.9 million. My doctor said the only 2 options for us was to treat with higher doses, or do longer period of time. He said because I have low platelet due to cirrhosis, he didn't want to up my dose, but said we could try for 48 weeks this time. I plan on starting some time in july.
I am so sorry you are going through this. But know we are here to help each other though. Keep coming back and let us know what your doctor says on you visit. God bless

[way]

Ok it's late and I'm brain dead. When I was explaining the mL thing I forgot to say that the measurement is mL's of your blood. So you have 320 (copies of the virus) per IU/mL (of your blood) That IS low, but none the less considered a relapse,because the virus is stil replicating.

I was told by most everyone that in the thousands or hundred thousands is low and it can go up into the millions which is considered high. I have also been told that VL is not really an indication of liver damage, which doesn't make alot of sense to me but oh well.
Your Doctor sucks at communicating-- but so does mine and on a high horse to boot. I get my info HERE.

[OnAPrettyPoison]

Really bad news - fact is, none of it is easy to treat.  We all take the same poison, some of us just take it longer.  Good luck with the new doctor, please let us know what happens.

[rochammer]

"When you re-tx'ed did you change anything? Different peg, different riba dose? did you need procrit in tx #1? Thanks. G3, relapsed after 24 weeks".

hey FLGuy

Yes had to take epo both times. First time week 12  Hgb got to 10.5  the second round we did not let it get that low started epo at 11.7 I did Pegasys and 800 riba  the first time 24 weeks

[FlGuy]

Thanks for the info.  I'm guessing that if I re-tx with combo, I'll probably do the same but with a thought to add tad more riba than my original 800.  Good luck.

[way]

I too am a geno 2b in the third week of tx. Grade 2 stage1 minimal fibrosis...my VL begining tx was 129000.
It's scaring me to hear how many geno 2's have relapsed.
My Doc has me on Pegasys 850/mg-a week and 1000 riba/day.
Is anybody else taking that much riba? What's the norm?

[Kalio1]

The "norm" seems to vary. I took 1,000 a day the first time, this time I take 1600 a day and so far the additionall riba hasn't really been noticeable. I was UND by the 4th week this time, the first tx I wasn't UND until week 12.

[rochammer]

Kalio1

Yup we can take all our meds not drink do everything right but plain old luck of where we fall in the odds is what it comes down to in the end LOL

[Ladyfhattcatt]

My husband just got home from work and he was with me at my appt. today.  He confirmed what I thought I heard which was my viral load is at 320million and they said that was low. After reading all your responses to my question I am finding it very hard to believe that it is unusual for a genotype 2 to relapse. My doctor says that there aren't any studies out there that include genotype 2 relapsers because it is rare. It doesn't look like it is rare to me. During my first round of tx I was not undected after 12 wks which leads me to belive that maybe they should have continued tx for 48 wks instead of 24. My husband asked me to post another question asking if there are any genotype 2 relaspers out there who have not re treated and if so, why? Doctors recommendation or personal choice. I will post it tomorrow but if anyone on this thread can answer that, please do. I want to make the most informed decision that I can make. Again, thank you all!!!

[Kalio1]

My doc has ALL 2's and 3's retreat if the first tx fails, he say that is his policy due to our high chance of clearing. Docs vary widely. Some give up at the first hint of out of normal range blood values too, it is all over the map.

Your doc is wrong, if it is 320 milion, that is NOT a low viral load, it is extremely high.
I would strongly recommend getting a second opinion and/or getting to a Heptologist who is using cutting edge treatment plans and who is very saavy treating Hep C patients.

For first time treaters it is the norm to have geno 2's treat for 24 weeks and in some cases for even shorter times, some treat 16 weeks. If you relapse they treat for the longer time, 48 weeks. It makes sense because you don't want to treat for 48 weeks the first time if 24 is enough. THe thing is, there is NO WAY to tell who will relapse for sure and who won't.
Retreating it seems they increase the dosage of riba (and sometimes the interferon) too and they treat for the longer time, 48 weeks. Then other doctors just give up, sort of an "oh wel, that didnt work" attitude and leave the patient going "WHAT!?" If your decision is to retreat then you need a doctor who is with you a the way in doing that.

[way]

As I said earlier I'm a newbie- just in my third week of treatment. And I don't know a whole lot, in fact I learn something new here on this board everyday... BUT I think I know what may have happened to your understanding of your viral load.  It is expressed as a number like 320 (which means that many copies of the virus)per IU/mL. I do know THIS because I have my labs right in front me. Your Doctor may have said 320 "mill's" or maybe he doesn't know how to read a lab, although I really can't imagine it maybe he DID say 320 million --mistaking the abreviation mL to mean million!!!!!! (scary thought)-- mL stands for milliliter--the defination being a unit of measurment (volume)=to one thousanth of a liter.

There are some doctors out there who will treat anything they can look up in a book. I was at one today  shopping for a new PCP and she was in the "book" for most of my visit. I told her "what I had" and then I told her what I wanted for it. (tinea versicola/spectrazole) She looked it up and said Ok. and wrote the script. She asked who diagnosed it and I said "I did"!!!I can't complain much because for a $30 co-pay I also got a script for ambien and the second vax for hep a&b. She looked that up also and said why vaccinate for a&b if you are treating? DUH- treating for c doesn't protect you from a&b and if you get it you are screwed.  But needless to say I'm still shopping for a GOOD PCP.

[Mister beagle bailey]

I to am a 2B and 1 week post tx.  I would get another dr and have another PCR done.  First of all, a VL of 320 million is very high, I don't think I've ever seen a VL that high.  There could also be a lab error, it does happen more often then we realize.
My prayers are with you and please let us know how you make out.

Beagle

[friscosue13]

You must be crushed by your relapse -- my sympathy.  I just learned yesterday that my 12-week came back undetectable for my 2b.  I won't ride that wave for long; guess I, too, will see what the future holds.  In the meantime, I can't wait to finish the next 10 weeks of tx so I'll once again be able to look at a flight of stairs without getting tears in my eyes.  Last year at this time I would occasionally walk 5.5 miles to work and swim a mile EVERY DAY before work.  Now a flight of subway stairs has me winded.  I don't know if I'd treat again.  But all the best to you with whatever you decide.  Just stay in touch with the folks on this board.  They're the best.

[Kalio1]

You are probably right, I didnt think of him making THAT mistake.. mistaking mL for million..
If it is 320 m that is super low, which makes sense sine she treated already.

Gawd, reading about the doc checking the book, makes you wonder!
Our heath system has gotten pretty dang bad when we have to diagnose OURSELVES and pay the dum bulb doc just to write a scrip. Lord have mercy!

[way]

That's one reason to get a copy of your labs and go home and google everything yourself.

I was curious myself (while waiting on my VL test results) if the test results (if in the millions) would be written out with all the zeros or written in some kind of code that only drs. can decipher. And then I got mine back it was 129,000 IU/mL. All the other labs were easy enough to read because the abnormal results were always "flagged". The only thing I still don't quite understand completely is the "gross description" of my liver biopsy. But since it was grade 2 stage 1-- I'm not too worried.

[gauf]

I just had a 6 mos post treatment viral load test, and I could have sworn the doc said 220 million. This site referred me to janus, where I found out there are differing scales. Maybe the doc means 220 parts per milliteter, or 220,000 mils. I was shocked cause I am geno 3a (80% cure) and had no vd at end of 12 wk treatment. My doc thinks my biopsy showing stage 3, may not be showing early cirrhosis because she expected me to recover. I did have some tough reactions and needed rescue drugs. Anyway, she wants to hit it again stronger for 24 weeks. I am now getting educated and taking a more active role in treatment. I WANT TO KILL IT DEAD! I would retreat now if I were you. Good-Luck.