anybody have cirrhosis on biopsy with the rest of the tests totally normal?

[niceguy2007]

after reading about the palmar erythema occuring at stage 2 posted by one member here,

i was wondering if anyone on the forum has ever been diagnosed with cirrhosis on a biopsy, with:

- normal platelets
- normal spleen size on ultrasound
- no fatty liver / or some fatter liver on ultrasound
- totally normal abdomen and organs on ultrasound

??

[Kalio1]

It seems clear that tx appears to have had a positive impact on me histologically. If you take the little info I have, which doesn't include a biopsy, my damage level has receded. My platelets going up while still on tx is a very good sign and the Fibroscan showing I am stage 3 and did not show cirrhosis that they found 6 months earlier with the CT scan is another good sign. If I can take that as fact then clearly I am heading in the right direction histologically. If I stop treating, I will not be able to access IFN, my ins. co. calls it "experimental" If I can get 6 more months of IFN to help my liver, I would do it for that reason. I want to believe I have already kcked the virus out. I can't get BC/BS to allow maint. IFN. I don't even know if C2C will continue to give me the IFN or if they will cut me off but I wanted to see if the doctor would write the scrip. Im running out of Cobra, I can get ins. through the state but it is limited and expensive.
There is a lot of evidence IFN can reverse some of this damage even if I don't manage to clear the virus so that is why I'd like to get it. It seems to be working and if I can pull the damage back I'd be a happy camper. I am doing all I can nutritionally and I seem to be headed in the right direction. I also am doing fine on my labs and he says as long as that holds true, he is OK with writing the scrip for me for another 6 months with histological improvement being the goal.

[GoofyDad]

Jim, Your memory serves you well. I pointed to the Mangia and von Wagner studies and we discussed 16 weeks. With the cirrhosis we decided to go conservative, with the idea that anything after 16 was gravy and I could stop if it got too rough. That eased things alot and I coasted to 26. I was very anemic, as you may recall.  

SFB - Cirrhotics can and do reverse. I'm banking on it. In fact, the general perception is I might already be back on the happy side of the line.

<small>Apparently males have an easier time. Fibrosis results from colagen build up. Seminal fluids have high concentrations of colagen. If we off-load enough seminal fluid, we can reverse. That should help explain the pink palms. As for females, for some reason it's reversed. The idea is to ingest as much fluid as you're able. Say Hi to your husband for me: Heh Joh.... Gooffa sahth Hiuh...</small>

[scubadiver30]

I'm in Madrid..beatiful city but cold and dry this time of year ;-)

[sfbaygirl]

My understanding is that a stage 3 does not mean cirrhosis and you can reverse your fibrosis level with treatment. Cirrhotics don't change stages, I believe, but could be wrong. I have heard of lots of people going down stages from interferon and diet changes.

It's raining in the bay area today, it has been really nice but cold. Where in Spain are you? I love Spain and have been there several times.

[scubadiver30]

Hi there
So I'm and F3..Thats pretty bad ;( that's precirrotic... isnt it?
In feb I'm gonna get me another FS (with no food in the stomach of course), and let's see what happens..About changing docs I guess I'm stock with this team if I wanna be able to fibroscan all the way up to may.
My doc is not mean, she's just.. how would I put it?...testy? fed up? I guess he sees many patients a day and she just kinda explodes when my 10 minutes expire.
The team is basically ok, as long as you don't complain much.;-)
saludos to everyono in the city by the bay

[sfbaygirl]

Your post was funny! Dr's can be real jerks. So she's sending an alert to the pharms huh? LOL You are correct about this place. We may not be dr's but we read the stuff, go by experience and debate it back and forth. No one is saying anything here is set in stone! Of course we never know. Even extending may not result in SVR. I think what your dr. told you is sound advise. Goofy is clear after doing 24 weeks with cirrhosis. I think 2's don't have the relapse rates that 3's are having, it seems to me.

If your dr. is sooooo rigid and mean, by all means see another if you can!

Your fibroscan at 10 is NOT cirrhosis, more likely stage 3. Tech's giving the scan can really make a difference. HR said he would never let anyone else do it, it's complicated. Also in trials they KNOW that fasting would make a difference, but they are not about to stop the trials and start over again doing fasting, so they are ignoring this. It would skew the results of the trials if they were to change all to fasting now.

[aiuta]

Thanks for your post.  I can relate to the anxiety you are feeling.  I was taking bipolar & OCD meds for 8 years before tx.  When I started hep c tx, my anxiety levels soared and the psychiatrist added clonapin, at a small dose (.5).  It's helped me considerably.  My experience is that Interferon augments many latent (or evident) pre-existing conditions/tendencies we may have.  I'm not a Dr., but I have had bipolar/OCD for years, and I can recognize some obsession and anxiety traits in your posts.  I hope you won't be offended by this.  That's not my point in posting.  I just wouldn't want you to live with the hell of the anxiety/obsessive compulsive thinking I know all too well.  It's VERY painful, not to mention taxing (on myself and others).  And I didn't even know how painful and taxing it was UNTIL I started taking meds to treat it.  Whatever you decide, I pray for relief for you from the anxiety.  You deserve it.  God bless and all MY best, Aiuta

[scubadiver30]

Hello guys
Have to tell you about my visit to the doc today for my 4 wk PCR.
Still no VL results from 2 weeks ago. L What a bummer.
She said I look OK and it seemed that I could handle TX okey.. I have to call tomorrow for the blood panel to see if I

[sfbaygirl]

I have been UND, but because the tests were not that sensitive I am getting a new one that goes <5.

My BX from 2000, my fibroscan in Nov. both looked like stage 1 possibly overlapping with stage 2, (as they all overlap). I really don't have the answers to what looked fishy, except the US and fatty liver v. cirrhosis in Sept. F has a lot more of my medical history than I do. One hospital wanted 25 cents a page (yrs of records) and I pick them up, or fax them free to F. I chose to send them to F. (you know how cheap I can be! LOL)

I have a referral to another hep dr. that my ins. WILL pay for. Part of my plan to see if I can get the dr. I want. If I don't like this local dr. I will complain and try and get my way. John knows the attny for the INS. group and will have lunch with him, this also may help.

[jmjm530]

I  thought "G" intially was playing around with 12 (or 16) weeks in your case based on your 4-week PCR, but maybe I have it mixed up with someone else.

In any event, I was referencing your doctor's eventual decision to treat you for 26 weeks for Scuba and Niceguy's sake.

SF,

Well, I'm pretty confused with all your variables and inconsistent readings both with the labs and liver damage. Didn't your biopsy/fibrosure/fibroscan (or at least a couple of them) all show little liver damage. If so, does this get trumped by red palms and a low platelet count  (how low btw)? I have no answers here, but I might ask at least one more doctor if time and resources permitted.

Goofy,

All valid points, but if you happen over to the other forum, in this same vein you will find interesting discussions on "box" sizes, a problem eventually fixed by a computer programmer who apparently worked on the problem over the weekend.

All the best,

-- Jim

[GoofyDad]

Initial consult was with G. Tx managed by F. Important decision points about duration included consultation between G, F and others.

G recommended 1 yr initially. I prompted revisiting based on 4 wk RVR. F concurred and ran by G. 26 weeks became the goal. I later got cold feet and discussed extending for anti-fibrotic effect and later yet extending just for safety. The livercheifs passed the pipe again (more came to this fire) and concluded risks outweighed possible benefits.

On a more serious note, GO talks about red palms, NY brings up the beaten path, then SF makes comments about longer and harder. Jim remains conspicuously silent on the creme d' nuit.

[sfbaygirl]

Nope, Dr. F

[jmjm530]

Dr."F" ? I thought Goofy went to Dr. "G"?

[sfbaygirl]

I know that his decision was not based solely on the goofy pcr. All the high risk factors I have, plus not having sensitive tests. He's not even sure I am UND now! Yes, HR did clear it up with the lab tech, we were put through to several different people, especially when HR told them he was their competition. I think Dr. F disagreed when he read the 20 week Pcr and the difference, but all in all there are more factors than just the PCR goofup. By not having any sensitive pCR <75 I may have had 200 copies throughout tx. I think just to be safer, it is a good idea. In fact, HR suggested maybe not to mention the goofup, just give the tests to the new dr, if extending were an option. Of course I did mention what HR said and the results of the calls to the lab with HR.  It didnt' seem to sway his opinion either way. He seemed to see stuff on the other US, bx, low platelets, high VL, red palms etc.

[FlGuy]

Tis the season to let a little optimism into the thought process. Finish in March'ish? UND for a big number of months (40 ish?), grown up doses of riba? You are not in a bad spot and when I'm done my tx#2 will look like your extension. I have no doubt that the end of my 46 weeks will see an end to hcv, no doubt.  Why not you? What have you not done?

[jmjm530]

I was talking mostly in general to those who haven't been told by their doctors to extend like Scuba (I believe) and Nice. It's different in your case since you have a fairly well-repected doctor who suggests extension although I must admit I still don't follow his logic although maybe I don't have all the information. I thought HR pretty much put the PCR issue to rest with a definitive Negative, and I'm not sure what the other issues for your extension were. Sometimes even the best doctors are short on time and make hasty decisions and that's why I ended up consulting with several hepatologists at critical points of my treatment. If it were me, I'd be on the phone myself to the head person of the lab in question and get to the bottom of that PCR result. IMO there is no reason anyone should have any doubts about what a lab report means because it was badly written up. The results must be there somewhere.

All the best,

-- Jim

[sfbaygirl]

I saw Goof's dr. and he was sure about me extending...not just because of the goofy PcR. He does seem to be agressive. When I mentioned the Oxymatrine (although I forgot the name) he didnt know of it, but smiled when I mentioned some thoughts about throwing some other antivirals into the mix. He didnt' say he approved, but how could he? HR believes eventually we will have a cocktail of antivirals, what they will be is unknown of course,

[sfbaygirl]

Does that mean 63 days before the first session of Cobra is over, or after the next 18 mos? Mine is coming to an end too. I can't imagine anyone covering us. Between John, me and his daughter no one wants us!

With all you are doing now (sledge hammer it to death :) Do you really want to do another 6 mos? Maybe maintenance? Your sx are so horrendeous, I can't imagine. YOu are a relapser and high risk....so I don't know what I would do.

[Kalio1]

Im not sure what I will do. I am happy he is on board to allow me to have that option should I want to follow that 2 year study. I presented it to him from the light of possibly having some histological improvement on top of hedging my bet (a small amount)for SVR. I know from this board there have been quite a few stage 3's that have cleared the virus, so that is encouraging. I found out today is I have some crud in my throat and ear, so that is probably not helping with how I feel. I guess I just got so used to feeling bad it didn't dawn on me I might need some antibiotics. You and others have struggled with various infections/bacteria so I had him check me out and do a culture.

He checked out my protein, bili, etc. and everything looks great. He is happy that my platelets have gone up even on treatment. He is happy my enzymes are 30. I was just grateful he was willing to script the IFN for me for 6 more months, now if Schering will OK it I will know I really did all I could to fight this. I told the doc about the Oxymatrine and he sort of rolled his eyes.

Im running out of Cobra and have to find an answer there. I did some preliminary looking around and got some info. but it looks not so great. Very expensive when Cobra ends. Ugh. I hate even thinking of that. You have to apply to get the other coverage within 63 days of when your coverage will end. That for me is coming up soon. I will find that paperwork and send it on, I know you have that issue too.

[jmjm530]

While some people here are extending, a few others are clearing the virus on shorter course treatments -- 12 weeks for geno 2 and 3 and 24 weeks for geno 1.

Personally, I see no reason for extending treatment unless your treatment stats warrant it, i.e. you're a slow responder. IMO the idea is to minimize both short-term (and possibly long term) damage from the treatment drugs by treating for the *least* amount of time that gives you a reasonable chance of success, not the *most*. One of our members, Goofydad  was a geno 2 or 3, with either late stage 3 or early stage 4 damage. I believe he's in his 40's. His doctor, very well known in CA for his agressive approach, only recommended 24 weeks and basically said that any incremental advantage in extending past 24 weeks would be outweighed by the risks of the treatment drugs themselves. Maybe Goofy will catch this post and comment.

Nice-- none of those things you listed under "negative" would worry me at all? None of them. What does your doctor say?

All the best,

-- Jim

[sfbaygirl]

Geez, what have my red palms started! Sorry about scaring people. As far as treating longer and HARDER, I think it will happen for more of us as time goes by and new studies come out. Kalio and I spoke about all the factors involved in making these decisions, not just red palms, bx or fibroscan. BX only shows a small sample of the liver. My new dr. noted that mine was small. My fibroscan results showed various levels, from 4 to 7 KPS. As Kalio and I saw on the slides of one person the amazing difference in scarring in one place compared to the rest.

HR recommends fasting, definately before fibroscan. Non fasting could have raised your scan from 5 to 10 possibly. It would scare me as I have heard Kalio talk about how fast the fibrosis has progressed with her as a geno 3. If I were a geno 3, I think I would extend to 48 weeks, if I could. I would also not watch and wait as a geno 3...given the factors of age, BMI, bx, pretx VL, length of onset. It is all a c@ap shoot, but you  sure don't want to do this again.

I like the way Kalio handled her relapse. She had a PCR 2 weeks after EOT and began tx as soon as that VL was there. She didn't give those virons a chance to flare. That I believe would help alot. Also, getting back on the horse so quickly, perhaps doesn't seem as a re treat, but rather a little break ;) Also I would insist on my Riba if I were a 2-3 based on relapses. Weight based is just a better idea.

Kalio, So are you doing 2 years? What did your dr. say about the fibroscan?

[Kalio1]

I just came from my doctor and he was talking about how new information he'd seen on genotype 3 showed it progressed to fibrosis much faster in many who have that genotype. Faster than other genos. That does seem to be true amongst the people here. I asked for specific data on that and he didn't have it off hand but would look for it.
He also is willling to keep my tx going an additional 6 months if I decide to do that because if I stop, I won't be able to get the ins. company to pick it up because they call tx "experimental" past 48 weeks for geno 3.

That is one factor that might be a predictor of more rapid progression. Once damage starts developing, it progresses faster in any genotype.

[copyman]

hey Citizen, can you elaborate more on the experience needed to tell the difference with the red palms? i think you meant a good hep doc can tell but do you know anything about what the difference is? i seem to be obsessed with my palms recently after reading about they could mean cirrhosis. i have no other sx and labs look good but palms are darker pink not really a deep red. i did not have a bx but my fibrosure result was 0 fibrosis. i guess this is why most people here say to always get a bx, otherwise you will always 2nd guess any other type of tests, fibrosure, fibroscan, etc. man the stuff you read on the internet can make you go crazy, i was fine until i read about the red palms then looked at mine and noticed they looked different and have been worried ever since. sometimes i do not know if my mind is sicker then my body!

[copyman]

iam curious to see opinions on scuba's question a few posts up about if it is possible for liver to degrade that fast. this is a slow moving disease for the most part but i also know that anything is possible with this disease, but can you progress 2 stages in 6 months? even if you stop alcohol and eat right? hopefully his FS was wrong cuz he did not fast before test.