What to expect

[Tyree2005]

I recently reviewed this site and I am very impressed with the comunication.  I have hepatitis C since 1991.  I now have high levels Quantitation 841,000.  I do not know what Genotype is yet.  I am going to have a liver biopsy.  But I need to know what to expect.  I am getting worried.

[MrsOckert]

The thing I would do different is try to get into a clinical study instead of doing tx thru the insurance company.  I'd also think a lot harder and longer about beginning tx.

You can access clinicaltrials.gov and apply online for studies.

[jmjm530]

It was pretty much just me as the study was fresh off the press so my doc was reading it for the first time when I was in his office.

I'm not aware of any new negative data on the study, but I doubt much further follow-up research will be done on high-dose ribavirin (HDR) in this country because: (1) much of our resources are being focused on newer agents like the Protease Inhibors; and (2) Riba has never been a favorite of doctors because of compliance issues like anemia, so HDR makes it just that more undesirable for most practioners, as well as patients.

That said, the study did grab my imagination, so much so that earlier in treatment I considered going to Sweden for evaluation and the special blood tests to measure  plasma riba levels.

So, probably to be forgotten soon, currently HDR still offers brave doctors (and patients) one more tool to be used in  very selected cases. But as newer drugs come on the horizon, IMO we will soon see the end of the riba era. And thankfully. :)

-- Jim

[LvdByGod!]

mike, i knew you were here back in the day...going on those badger hunts ;0)...i knew you were on for a loooonnnggg time...and i though you were here when i first started...and yup...i started 10/02...my first post was named..."JUST FOUND OUT"...i wonder if you were in the batch that commented...

tx really keeps your brain asking the question, now what did i do yesterday???

blessings to you mike...

jmjm, ohhhh, now i understand....now it makes sense...you and your dr trying to do that sweedish study...wow!!! man, i almost forgot about that study...then it was prooved to be debatable in more recent times i believe...not sure on that...

wow that was brave...

may God bless you on clearing jimbo, you're on your way there!!!

sandi

[mikesimon]

Thanks Sandi for your kind words. I don't really recall when I started here. I looked up my password info and it appears that I was registered on 6/11/2002 but I would have bet money that I was here before that. But I guess that's the date. I've been wondering about that myself so thanks for asking and making me find out. Hope you're well and happy. I like reading your posts too, by the way. Mike

[LvdByGod!]

tyree, i'm happy that you will be joining us here and hope to get to know you more...i hope you find all the info you need to make a wise decision on tx...i also pray your biopsy shows no damage...i have always heard if you are staged/grade over a one than that means you should treat...if one or under they can afford to wait a bit to see if better treatments come along as long as they keep a close eye on there bloods/ct scans/ultrasounds...etc... and by doing biopsies every 2-3 years...

hey guys,about the peg vs pegy ...i've been reading up on hep c for three years and have never seen anyone present info saying peg intron was stronger than pegysys. i have heard that they are about the same though... i have also heard many who have done both say the sides are much easier with pegysys....perhaps people just assume peg intron is stronger cause it beats you to a pulp!

jmjm, i will say though that there was much discussion on peg intron being "weight based" so because of that "very over weight" folks might choose that option so they make sure they get enough meds for thier wieght...since pegysys is just offered in the one size fits all dose!!!  

however, me being overweight, one of my hepatologists was willing to give me a higher dose of pegasys...but instead i opted for going longer after the viral breakthrough instead, because i didn't think insurance would pay for a double dose of pegysys....and my first gastro wouldn't give me the right amount of riba for my wieght saying he didn't want to kill me...and me not knowing any better went along with it...i did end up loosing enough weight from treatment after 6 months to finally be in the size range for the riba that was being prescribed for me...but by then it was probably too late...riba is most important in the beginning i've heard...that could be why i had a breakthrough...who knows?

compliance is probably the single most important thing...i accidentally missed doses of riba and that could be another reason i had the breakthrough...but other factors are many as well including being 3a (known to be associated with breakthroughs) and being overweight with fatty liver...and having advanced disease...stage/grade 3-4

these coulda tipped the scale so to speak. i'm a bit scared though cause i come off meds on this New Years Eve and am freaked out i will still have this disease after being on full tx over 2 years straight...very scared!!!

mike, it's so good to see you posting often again...i always loved to read your posts...i learned so much from you back in the day...how long have you been comming here now??? i started in fall 2002 and i think you were posting before i started here? it's been a long time huh???

jm thank you so much for your informative posts as well...even though we may not agree on everything...i am in awe of your study abilities...you too cutes, you study wizzard you!!! i just can not go too deep into study on this tx these days...the brain just won't go there...at first i read everything, now just bits and pieces, but i mostly just listen to you guys who do your homework...thank you all from the bottom of my heart.

sandi

[jmjm530]

Feeling OK considering but as my physical symptons get a little better the "fog" seems to roll in more.

Anyway, to the riba, my doc was aware of what I was doing. I told him I wanted to try and emulate the Sweedish study and he said, "OK, we'll experiment."  He did insist of seeing me every week for CBC and PCR's. On reflection, we staged up too quickly (he actually initially suggested 1600 but not-too-swift-mr. impatient-here talked him into staging to 2000 right away). In any event, even if we staged up gradually, I personally can't imagine tolerating that much riba. I think the Sweedes were all below or near 10 hgb by the end of the study. Don't think I could function at those levels. How they had close to 100 per cent compliance including two double-transfusions is beyond me. Must be a heartier bunch of folks over there. :)

-- Jim

[LvdByGod!]

hey jim, thanks for asking...i'm feeling ok today, better than last week...

how the heck are you feeling ??? i hope you're feeling better lately...i know you were having a hard time...

that was really something that you tried to do all that riba...oh man, i tried one extra pill for a couple days and felt like i was gonna die...hahaha...that's one of the reasons i opted to go longer instead of doing more treatment...yikes!!!

what did you tell your dr??? did he give you a spankin???

[jmjm530]

It was too much ribavirin that put me in the ER, not the double-dosing of the Peg. For a week or so very early in tx I was taking 2000 mg/day which is way above normal protocols and obviously a mistake. As far as symptons were concerned, one day I was doing a slow jog on my treadmill for twenty minutes and three days later I literally couldn't walk across the street. That plus a lot of nausea and a big lump in my throat. In the ER they hydrated me up and were going to admit me for observation but after 8 hours waiting for a room I signed myself out. Then went off riba completely for several days.

On reflection (hindsight makes us all geniuses) I don't think the double-dosing or the higher doses of ribavirin helped me at all. That said, some doctors think inital double-dosing for seleted patients gives incrementally better results. Personally, I wouldn't advise either of these routes to anyone unless they have significant liver damage and/or failed or are not responding to current treatment with normal doses. You also need a medical team that has experience both in the dosing and managment of side effects.

-- Jim

[IttyBitty]

Thanks Jim for taking the time to give the detailed response, it will help when I meet with my doctors.  I have been reading the links to the different treatments in the meantime, although I've found it easier to get a clear answer by posting a question sometimes (brain fogged responses excepted...big grin). I don't know yet what treatment they would recommend.  Could you tell me how double-dosing peg and too much riba put you in the ER?  Was it too close together?  What symptoms made you go to the ER exactly, low WBC, anemia?  Just wondering what to watch out for.  I hadn't heard of the 'er' side effect!  -ittybitty

[cuteus]

agree with you 100%! I was given the choice by my first hepatologist as to any of the available meds out there, any. After reading the studies we got links for here and people's personal experiences, I decided on the Pegasys. Still svr at 10 months post tx,e ven though not cleared at wk 12. But I have read about many low initial VL here that were on Pegintron and not clear at wk 12 also. The best one I read about for geno 1 was consensus interferon, but I was chicken about the sides...
So many "specialists" out there that can't seem to agree on anything!
my MD said that they are seeing a lot of two's and three's relapsing and then you get the Italian&german study saying you will be ok with less.
Does anyone see a uniform hep c medical community agreeing on things in the future?

[jmjm530]

Thanks again for your support Mike. I should add that the doctor who advocates Peg Intron knew I was on Pegasys and still gave me a 90% chance of SVR given my stats. Maybe he would have given me 91% with Peg Intron. Your own story, while anecdotal, is very important because it points out how important the compliance issue is.

Even though I'm accused of being anti-tx by some who don't read or care to read my posts, truth is I'm a bit of a cowboy when it comes to treating those with advanced fibrosis. In my own case, I double-dosed peg and put myself in the ER by week 2 by taking too much riba. I have lots of ideas how people can clear the virus  with agressive treatment but frankly most people don't want the ER as an option. We live. We learn.

-- Jim

[mikesimon]

I can understand that and still not agree. But regardless of all this I am believing that you'll be well and an SVR. Good luck my friend. Mike

[jmjm530]

Thanks for the nice words and taking the time to post. How are you feeling these days?

I wasn't so much making a case for Peg Intron, but rather answering someone's question of how I would treat differently if I had to do it all over again. As you suggest, there are no studies that conclusively demonstrate one peg is any better than the other. But still, a choice has to be made, and there are advocates in the medical community for both.

-- Jim

[cuteus]

see?? that just confirms that they are not made the same way over there as we are over here! different genetic molds! ;-}

[IttyBitty]

Thanks Jim, I hope others chime in.  I've been here a whole week, and I realize I have a lot of research to do before deciding what to do (aren't I a smart girl!).  Got a laugh that you didn't know what 'tx' meant, I just learned in a chat room that combo therapy meant pills + injections.  Still haven't sorted out the 2 different versions of pegasys by roche and shering etc.

Question 1: why 2 tests Firbrosure and Fibroscan, aren't they almost the same?
Question 2: Why Peg Intron instead of Pegasys when you start off saying 'We see more relapses with Peg Intron than Pegasys', and 'Pegasys has less side effects', did you reverse that, or am I missing something?  brain fog?  
Question 3:  and you also said 'no guarantee that Peg Intron would have worked as well'  why?

What was your genotype/stage?

[jmjm530]

Question 1: Fibrosure is a blood test. Fibroscan is a physical device that non-evasively "scans" liver tissues and correlates it to an equivilent biopsy stage. Fibrosure is readily available in the U.S.A.  Fibroscan is available in parts of Europe but available in U.S.A. only in I believe three centers on a trial basis. Fibroscan awaits FDA approval based on these trials.

Question 2: The brain fog is mine and I had it reversed. I was told by one doctor that he sees more relapses with *Pegasys* than Peg Intron, but he did go on to add that this statement was controversial within the hep c medical community. In other words some doctors disagree. Pegasys appears to have less side effects according to many posts I've seen here and elsewhere (and according to my NP) but I have no first-hand knowledge nor have I read any studies on this.

Question 3: What I meant here, that in spite of the fact I think Peg Intron might be the stronger drug, so far I've done very well with Pegasys and their is no guarantee I'd do as well with Peg Intron, as it is a slightly different drug. As "Crushed" said above, to an extent we're "all guinea pigs" and even well-known doctors don't agree on some of the major treatment issues. It's no wonder that we non-professionals don't agree here as well.

-- Jim

[jmjm530]

Here are my stats you asked about and a few more.

Genotype 1b, Stage 2-3, Pre-tx VL 1.5 million, 3-log drop at week 2; Non-detectible at week 6 via Heptimax (<5 IU/ml), Pegasys 180, Riba 1200, Procrit 60,000 u/wk,  Week 36 of probably 48.

[cquest]

Count me in as one of the 'shoulda coulda woulda's':

Shoulda had a complete physical before I tried to tx.

Shoulda had any dental work (root canal) first.

Shoulda had a bx or Fibrosure test first.

Shoulda gotten a second opinion from a Hep Dr not just Gastro.

Coulda stayed on tx but the rash was too much and by the way, built up and continued on past my record 5 day tx period.

Woulda never started tx if I had known my damage was so little BEFORE I decided to tx...

The mantra of the day? RESEARCH! RESEARCH! RESEARCH! Then decide.
Cin

[Tyree2005]

Thanks to everyone for all the good information.  I will be going to all the web-sits given as well as reading this site everyday.  My hepatologists mention treatment with interferon in my last visit but I realize that it

[friole]

I too was tired before treatment.  I have a desk job so have it easier than most.  Still, the brain was about done by 3:00.  What has happened now is that I have this hep C compulsion, and that takes up a lot of my morning "good energy" time.  That is, I am on the computer checking this sight for an hour of work time each morning. LOL. Also, my focus is shot.  I think about hep C all the time. Still, this is not my "busy season which starts after the first of the year.  I am curious to see how I handle that.

Now that I am on tx I am tired, but for another reason - the anemia that comes from the Ribavirin (can come, not everyone gets it).  I am encouraged that this will be better as the blood growth drugs kick in over the next couple of weeks.

Some of us are able to work, and others not.  You just don't know how the tx will affect you until you start.  There just don't seem to be any determining factors to figure that out.  I think we all worried soooo much about the sx (side effects) before we treated.  My sx are livable.  This treatment for me is doable.
Kathy

[FlGuy]

I'm also 55. Much of the time feel older.  I'm in wk 19 of 24 and since the start of the trip missed 2 days of work, 1 on bx day.  I've been luckier than most with sx. Weekends are lost and feel like - you know.  Deal with frequent tune-ups for low ANCs - but that's just another shot.
I realized 3 things early on.  1. Need to pace yourself thru the week.  Being low on gas in the first place, it's not far to empty. 2. Every day is a new committment. Take the poison, get better, strive to get to the end.  Being non-detect at wk 12 helped there. 3. If you have family you are not the only one on TX.  It's as hard on them as you.  Guarding against riba-rage is very difficult. Wife and kids have learned to say 'that you or the riba' I step away and try to chill - it's all little stuff anyway.
There are folks here who have been thru a lost worse - multiple times.  I am in awe of them and pray they will reach their goal. Good luck to you.  I was were you are a few months ago and am glad I found this place.  No one knows like the folks here and you already have an advantage on dealing with HCV.  Make good decisions.

[mikesimon]

I would have never guessed you were a cowboy Jim. Yea, right! I could hear your spurs jangling before you wrote your first post. But I do like your style even if you were a bit trigger happy with the ribavirin.
I agree with you cuteus - there isn't a lot of agreement among the experts but, then again, there are 2 major drug companies sponsoring some of the studies and that is apt to confuse things a tad. I'm so glad you are doing well and still SVR. Some of us have beaten the odds, haven't we?
Mike

[jmjm530]

Yes, viral load can fluctuate wildly. Mine dropped from around 35 million to 16,000 in a few years without treatment. Same lab. The 16,000 IU/ml was three months prior to tx but I was 1.5 million IU/ml two days before I treated. Same lab. Go figure. In your case as well as mine, since we were non-detecible early, it really doesn't matter in terms of the two-log drop but it does give pause.

As far testing, Heptimax, etc...my doctor doesn't entirely trust quantitative tests like Heptimax that go below 50 IU/ml because of false positives do to lab error, contamination, etc. He basically feels any test that goes down to 50 IU/ml is good enough. Many European researchers feel the same way and I don't believe they use the very sensitive tests in their trials.

I also heard this about Heptimax from another well-known hepatologist who uses quest's very sensitive qualitative instead. So, yes, the Heptimax was my idea for better or worse although I've often thought of switching to either to Quest's quantitative (<50 IU/ml) or sensitive qualitative.

-- Jim

[sunspot]

We are at about the same wk on tx. On the home streach, as it were.
Would you be so kind as to explain the difference between qual and quant? I get so confused lately.
TIA

Dana