Hepatitis - grade 3, stage 3 genotype 1 -prognosis?

[dillyd]

I am trying to find out the prognosis for a 54 male dx with Hepatitis C. Liver bx 10/04 showed grade iii state iii and diffuse steatotic hepatitis were present.  Just about completed 12 months of Inferon treatment. 10/05 ast/sgot 115 and alt/sgot 98.  Since LFTs are not that bad does that mean prognisis is good for recovery? Worse case what can be expected?  I tried to research grade 3, stage 3 without much luck.  It is also my impression that geynotype 1 usually does not respond as well to inferon tx as geyno type 2 and 3?  I am grateful for any help you can give me in understanding the level or degree of liver damage and prognosis.  Thank you
dillyd

[jmjm530]

Josie,

Extending treatment to 72-weeks is a good idea assuming you are clear of the virus. I'd keep repeating your PCR at least every three months  to make sure you're still responding. Try and use a PCR with a sensitivity of at least 50 IU/ml but it sounds like you may already be do so as they picked up 212 IU/ml at week 24. Should the virus break through, then you have to go to plan "B", whatever that may be.

Compliance and dosage is also very important. Make sure you're on the correct drug dosages and discuss with your doctors maximizing the amount of ribavirin you are taking. Some of us take more than the the weight-based chart says but the downside is more sides/anemia, etc. I assume they intervene with Procrit in the event you become anemic.

In your case, working with a specilist long-distance in conjunction with your local doctor, sounds like a good plan.

All the best luck. Your attitude and perseverance is truly inspiring.

[cuteus]

How sensitive was the PCR? if it goes below 50 IU/ML is a pretty good indication of clearing the virus, but you need to go longer to "mop up" as Eibsien says, the remaining virions.  28+36-40 wks=64 to 68 wks more. I would go for a total of 72 given the fact that is my 3rd round and the liver damage present. As a matter of fact, I did do 72, after clearing officially at wk 26, but it could have been sooner, I just did not test until wk 26. You can beat this thing, with the proper protocol. Some here have done 3 or more rounds and are now SVR.
good luck.

[josiejo]

Thanks for your post jmjm. Geography has not been a problem. When I treated the 1st time with Rebetron I did have a gastro. I was not clear at 24 weeks so I went off the drugs. At the time pegalated drugs were not available and the gastro told me there was nothing he could do and come back in a year for a check up.Don't tell a cirrhotic there is nothing you can do! Back then I didn't know the right questions to ask nor did I get copies of my blood work. I could not wait around for a year, so I went crusin on the net and found the Zadaxin clinical trial which was in Michigan and less than an hours drive. I went into the trial with few expectations, I was also aware that I would not receive ribaviron. So, when not to much is available, then a girls gotta do what shes gotta do!! The health care was awesome and I loved my gastro. Near the end of my trial I started seeking specialists back in Ontario. I went to London as well as Toronto. All they could offer me was another clinical trial. The world famous Dr from Toronto told me that the only thing I had going for me was that I was tall and slim and had a less than 5% change of clearence. I walked out in tears. The hospital has called me a few times to see if I would still be interested, but with an attitude like that I'm not sure if I care to work with her. I tried to get back in to see my gastro who treated me 1st to no avail. There is a one year waiting list to see him.

So my 3rd round of treatment is with a Dr who works one day a week at a methedone clinic. He is new to this but has a very open mind and is being advised by a Dr in London. My drugs are covered by the government with a copay of $3000 per year. I am very blessed to have a great job and make a good living. Even though I could afford to pay for the drugs, the Drs here won't allow it!!!! No complaints here.

As far as viral the load.

start: 8500,000
week 12: 7,500
week 24:  220
WEEK 28: negative

all liver enzymes are elevated
One of the other problems is that the Dr is not so sure that I'm going to clear because of the liver enzymes. I have tried to research this to no avail. If anyone sees anthing about this let me know.Other than that I am the healthiest cirrhotic I know. Also I have had 3 biospies and my last one showed that my liver has improved. So all of this has not been a total loss.

[jmjm530]

Based on past treatments, I don't think you can say you're a responder but at the same time you can't say you're a non-responder  since you were never treated with conventional combo therapy. I'm still unclear if you were non-detectible at week 24 or not. When you did clear and what was your most recent PCR?

In any event, as a stage 4 you want to treat as agressively as possible while being realistic at the same time. Doing your own research is great, and places like this are also a valuable source of info , but I think it important to consult with a good liver specialist if that is at all possible.

Maybe I've overdone it -- I tend to :)-- but I've consulted with 4 hepatologist since I started tx 35 weeks ago to help clarify things in my mind. If no specialists are nearby, it might be worth a trip for the first consulation. Many will then follow-up via email or phone, even work with your local doctor if you want. I really don't see geography as a big factor after the intial visit as long as the doctor is willing to work with you long distance.

All the best with treatment and keep asking questions and let us know how things pan out.

-- Jim

[josiejo]

Thanks so much for your post. I was dx in may of 01 and started tx oct 01 with Rebetron. Non responder @ week 24, a year later I did the Pegasys and Zadaxin trial with no riba. My viral load was <600,000 at start and at the end I was 19,000 (week 48) At the time of my trial Health Canada had not approved pegelated combos. 6 months after my trial my viral load shot up to 8,500,000.Health Canada would only consider my Pcr done in 01 and refused to retest me at the begining of round three. They don't recognise any treatments done in the USA. Go figure. I do believe I am a responder, but a little on the slow side though. Unfortunately I live in a very underserviced area with no access to a liver specialist. So you can say I am sort of treating myself. One thing I have in my favor is that my new Dr will listen to me and is open to options.

[jmjm530]

I see you're on your third treatment which can have a number of ramifications, depending on what you previously treated with, whether your responded or not, had a viral breakthrough, relapse, etc. So the following assumes none of the above, just more or less generalizes on a typical naive (first treater) geno 1. Hopefully you are seeing a good liver specialist as this is your third attempt and how you responded in the past is relevant. For example, if you responded in the past to drug "A" but then relapsed, you probably would still respond to drug "A" if you extended treatment more.

One rule of thumb is to treat at least 36 weeks after being non-detec, so in your case that is a little unclear.

You said you still had virus at 24 weeks but a follow-up PCR said you hadn't. In any event, if you cleared at 24 weeks, then my opinion would be to treat for at least 60 weeks but consider 72 weeks. If you didn't clear at 24 weeks, then you probably want to treat for 72 weeks at a minimum.

Regarding your slightly elevated enzymes, a certain percentage of people  have elevated enzymes through treatment and still clear the virus. But you might just want to get another PCR now and double-check. Not a bad idea especially if you're going to extend treatment to make sure you're still responding.


I think this is your first post here, so it's important to know that none of here are doctors and you should double-check everything with your doctor and other sources before making any treatment decisions.

[jmjm530]

I answered your question without really picking up on one of your major concerns being "can life be long" given my friend's condition. It was the first thing I thought about, the first thing many of us thought about, when we were diagnosed.

We're hoping your friend gets cured this time, but even if he doesn't, you have every reason to be optimistic about him leading a normal lifespan. Stage 3 is not stage 4 and even stage 4 has a number of layers before things get to a very bad point.

Current treatments have never been better, and even if your friend does fail this time, there are other treatment options availble. What's more, there are newer and better drugs in trial that a lot of doctors are very excited about. Hopefully, they will be generally available in 2-4 years.

One way or another, sooner or later, in my opinion your friend has an excellent chance of being cured and living a long, full and productive life.

-- Jim

[sunspot]

It's mostly the Lexapro but the Riba adds to the problem.
I know this does not help but at least you are getting some answers.

Dana

[Fisheress]

OH, I have one more question.  With the holidays coming up, my brother from Biloxi makes the most awsome oyster dressing!  Can I eat cooked oysters?  I eat alot of fish and I know thats OK, (lucky to be here on the coast and the fish market 2 mins from the house)but my sweetie read somewhere that I am to have NO SHELLFISH even if cooked.  Is this true?

Hey jmjm, have pics prior to treatment! LOL! Oh and CUTEUS...LUCKY YOU!  Maybe it's all in my head (oops!)hehehehe

Best to all,
Fisheress

[jmjm530]

Someone please check my math but I did not see a two-log drop in the first 12-weeks of treatment which is not optimal. Hopefully, they did another PCR test at week 24 that was non-detectible? Hopefully they did another PCR at the end of treatment that was non-detectible? I wouldn't even venture a prediction unless we had some more information.

As far as what stage 3 means, it's considered signficant liver damage but don't let the words scare you.

I'm probably a stage 3 or close to it and many here are stage 4's. If your friend clears the virus, the liver has a remarkable ability to heal itself. So it's possible a stage 3 could turn into a stage 2 or even stage 1 some time after they are cured. What it also means is that your friend should really be on top of things should treatment fail.

Without knowing all the details, hard pressed to offer advice on next steps. Like I said earlier, why don't you insist on a 30-day post treatment viral load test as the doctors usually don't do this. If negative, then hopefully all of this is academic and you guys can relax a little. If positive, maybe get a second consult with a liver specialist (hepatologist)go over everything again, and start exploring future treatment options. We're always here for you to kick things around.

-- Jim

[dillyd]

Thank you for your comments. I do know that prior to treatment  the HVC RNA by PCR on (1/03): >18,900,000 AND HVC RNA >7,000,000. TREATMENT STARTED 11/04 AND BY 2/05 HVC RNA by PCR WAS 2,590,000 and 6.41. Thats good?  When the test is retaken after treatment is there a general range above the reference range for this test that would suggest that the pegasus treatment was successful? And if not at reference range will the pegaus treatment have to continue or what next? (Lots of questions-Sorry)

On a scale of 1-10 where would the severity of having a grade 3  stage 3 bx fall? If it does not appear to be getting better any suggestion as to what the next paln of treatment could be?
  I know your not physicians. Im just seeking to understand overall what can happen and if life can be long.  Thank you

[cuteus]

That post on the PCR results was not very clear, there was detectable virus at wk 12? at that point, some drs call you a slow responder and start considering a change in tx length(too late now that he is done) or a change in meds(I guess too late also).  If virus is detectable at wk 12, the svr rates can change.
what was the 24 wk PCR?

[GoofyDad]

Fisheress - I dunno about women, but speaking for men - I've seen no issues. I'm still raring to go..... sometimes TWICE a year!

On to the oysters - If you're planning on eating them for the reasons I think, forget it. I tried a dozen once and no more than 10 or 11 worked. And the last ones took nearly two hours to get the job done.

Seriously though. I've heard no raw shellfish and I've heard no cooked shellfish. I avoid the raw and don't worry about the cooked. That's me - always flying without a net. Next week I might go out without my umbrella!  

[josiejo]

I'm so sorry for hijacking your thread. I'm new here and have been somewhat of a lurker. I tried to start a new thread to no avail. I am a 50 yr geno 1a stage 4 and on round three of treatment. I'm some what puzzled with my treatment and could use some help. When I started my latest tx I was not allowed to have a PCR. (government) So I went in with an old Pcr from a year ago, which was 8,500,000. Week 12 I was down to 7,500 and week 24 I was down to 220!!! I went to Mi where I paid for another Pcr which said negative. I have made application to extend my treatment for at least another 12 weeks. I have to say that I am delighted that I am negative and "Failure is not an option " in my books. My Dr and lab tech don't have much confidence in my recovery. If I listened to them at week 24 when they said go off the drugs then I would have never known that I was negative a few weeks later. My delima is that my liver enzymes have not come down and I am in week 41.I just can't give up!!

ALT 64
AST 77
GGT 120

I have had no other problems with bloodwork

Thanks everyone
Josiejo

[jmjm530]

Glad to hear your responding so well to treatment. I agree that you have every reason to be very optimistic that you will be cured.

As far as "sex" is concerned, I had this AMAZING dream last night LOL but I think that's about all the sex I can remember on treatment. Hopefully others will have better stories or even some pics. LOL.

-- Jim

[Fisheress]

Wanted to get back to the support part of this forum.  #1...I had a 2 log drop at 4 weeks, therefore I think I am going to have a great response to this treatment (gyno type1A, no scarring and little portal fibrosis), looking forward to being non-detectable at 12 weeks!

Question to anyone who can answer this.....WHEN DOES THE SEX DRIVE COME BACK? Post treatment?  Is it the Interferon, Riba, Lexapro, combination of it all?  Hate living like this and so does my sweetie although he is much understanding. Hope this does not go on ALL THRU TREATMENT! Is this too personal a question to ask?  Need to know though....  :(
Thanks,
Fisheress

[dillyd]

Thank you for your comments. I do know that prior to treatment

[cuteus]

in addittion, if you are trying to find out if the damage to the liver can be reversed, you can do a 'fibrosis reversal' web search and come up with many studies on that one.
You do know that we are not physicians at this forum and can't really give you a true prognosis, right?

[jmjm530]

OK. Not to leave you in the lurch. :) Here are some very general numbers that I've seen. Keep in mind not everyone will agree with them.

Gentotype 1's have about 40-50% chance of successful treatment with 48 weeks of Peg Interferon and Ribavrin. If they take 80 per cent of their meds 80 per cent of the time, the chances of SVR get better. If they have a two-log drop (two decimal points) in their viral load by week 12, the odds even get better -- up to 80 percent chance of being cured according to some. These are just general numbers but like I said, your best indicator now will be the post-tx viral load tests.

-- Jim

[jmjm530]

I'm assuming your friend has already completed the treatment and your question is what are the chances of the treatment being successful? I'm also assuming your friend was non-detectible for the virus at the end of treatment? Also assuming those are pre-tx liver enzyme numbers.

I could ask you a lot of questions and come up with a guestimate, but at this junction, if you really want to know, the easiest thing is to have qualitative viral load test of a very sensitive PCR test done 30 days post treatment.

In my opinion based on what some doctors say, if your friend is non-detrctible 30-days post, he has about a 90% chance of remaining non-detectible.  Take another test three months post treatment and if non-detectible, the chances of remaining so jump to over 95%. BTW the definition of "cured" or SVR (sustained viral response) is being non-detectible six months post treatment.

-- Jim