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.

[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]

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.

[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]

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

[CitizenSmith]

Just my 2 pees worth (2 cents), I've seen comments from two of the top bods in the UK to the effect they are seeing more Geno 3 relapses than initial studies suggested.There are now ongoing studies Txing for 48 weeks with a view to preventing these relapses.Personally I think the 4 week undetectable people will be fine on 24 and if it were me I'd do 48 if not.I realise it's each individuals decision to make but we all need as much info as possible.The red palms thing is a bit of red herring :) it takes someone with a lot of experience to tell the difference between normal and cirrhotic  redness.

[Kalio1]

I also think you should seriously consider extending however I do not believe niceguy needs to extend, he does not have damage like you do. I know he worries a lot, but all his info points to him having either no damage at all or a very small amount plus he cleared it by week 4.


I too am a 3a and relapsed, my recent Fibroscan score was 11.1 which is not a whole lot more than what you have. I would extend if you can, Scuba. I would do 48 weeks if I were you. Also you have a bit of a weight issue, I'd try to lose that if possible. You dont have to eat a ton of fat with the Riba, just some to get it rolling. That aspect is important in the first part of tx but you dont have to keep up massive amounts of fat for the entire tx. How much riba are you on? I'd take the max I could get my hands on in the beginning of tx.

[FlGuy]

I'm a relapsed G3, but there were reasons that I relapsed that are not necessarily applicable to you (early cirrhosis, older than dirt, underdosed with riba, bad pcr scheduling and a few others) - almost the opposite of you.  Without a compelling reason to extend, why would you?  If anything, you might consider a shorter, rather than a longer course, of tx.  Talk to your doc.

[NYgirl]

Thank God for you - it's so nice to know my thought process isn't that off the beaten path.








hahahaha ;)

[scubadiver30]

thanks for responding...
So if I feel reasonably well the first 4 weeks that does not mean I'm not gonna feel crappy later on right?
So I guess I'll base my decision on the VL readings early on...
but the male + >40 + BMI formula is gotten me paranoid and since I'm tailoring my TX based on the experiences here, I thought it was common sense to extend :-(
Today I feel exceptionally well (except a mild riba rash) and I have found the I'm able to concentrate better and produce several good ideas at work...I wonder if my body can feel it has achieved SVR? That would be extremely cool wouldn't it? naahhh


Good luck this time

[scubadiver30]

Hi Kalio, gracias 4 your input
I'm doing 800 RIBA /180 IFN...the standard for 2b.
Tomorrow I will insist on the 48 wk. But like I said before, I have no means of getting procrit or neupogen on SS so I guess I have to be extra careful...They didn't want to give me more riba to start with.
My 10 KPA is also scary, and my 90 kg also are negative predictors... and the red palms that I never considered issues before :-(
One question, did u levelled out after the 24th week?

thanks and best wishes

[FlGuy]

There are a lot of variables that play in our minds, especially when we read of the experiences of others.  About a year ago, and it comes up every once in a while, is the risk/reward about extending tx. If we consider just geno 3, the question that we undoubtedly ask ourselves is 'how better off would i be if I did 36 instead of 24?'.  What magic may lurk in those additional 12?  If I do only 24 and then relapse only to do another 48, that's a total of 72 and how much of that could have been avoided if I did 36 in the first place? How much of a handicap (in weeks) are things like age, weight , significant fibrosis, blood sugar and diabetes.  All tough questions to answer and tougher to committ to.  It's usually later in the tx week (4-5 days after shot) that I begin to feel a little more spry and useful. But then it all starts agin in 2 days. As to the BMI, I would expect that riba at 13-15 mg per kg is a minimum - are you in that range?  Being a replapser (24 and now 46 more) my point of view is jaded and not so sure where my objectivity is right now.
Feliz Navidad

[Kalio1]

I don't think Im a great example for how people do on tx. Put it this way, I would not be chosen as the poster girl for treatment! I have had a pretty rough time although I have NOT had to use any rescue drugs, I have had lots of bone/joint pain and extreme fatigue and nausea all the way through. My Hgb has hovered around 10 the entire time (including the first tx of 6 months and now an additional 10 months more tx so far)I have had a few days where I felt pretty good, was able to take a walk or participate in life in a normal way, but they are few and far between. Usually if I attempt activities, by the time I am showered and dressed to go  I have to go throw up. LOL Then if I DO go, I start getting light headed and feel like I will pass out. I am so glad to hear you are able to work and so far not having a hard time with it. No one knows how you will do, it is different for everyone.

I also took 800 riba the first time as instructed. I do feel I was underdosed on Riba. This round I took twice that for the first 6 weeks.
Please post your PCR results when you get them! Im dying to know how that went.

[scubadiver30]

I'd say I needed 1200 riba but the doc insisted on my geno. Said 800 enough and even Dr Cecil says on his web that 2/3 "easy to treat non americans" could even do with 400 Copegus a day??? weird..Like Rev says, this thing is messing me up mentally...(even more than the meds) Just to wait 2 weeks for a darn result drives me nut.
On thing about my FS results..the first one was 3.8 KPA and with a 6 months difference it jumped to 10 KPA??? I didn't fast int he least 2.. HR mentioned something about blood thickness.
I ask myself is that degradation biologically feasible even if I stopped drinking & smoking after I learned I was HCV+??

[Kalio1]

I agree, the head trip is a big part of the battle. Keep in mind that MOST with your geno DO clear the virus on 800mg a day Riba and 24 weeks treating. We always think the worst, and I have already relapsed so my view is jaded.

All relapsers get a bit jaded, the polish is definately off the apple for us. So remember here, like ahywhere people give their opinions, always "consider the source"  a person who has not relapsed will tend to be more optimistic about tx success than those of us who have had to go at this more than once.


I hope you have a wonderful holiday and all your loved ones do too!

[scubadiver30]

Today was the Xmas party a the office and decided not to go, cause there's gonna be a lot of booze and food and dancing.
My coworkers that know I'm treating say I look fine and also my wife says it is a piece of cake (based on how I look) God, what do they expect??...the crypt keeper in 10 days?? c

[NYgirl]

I get ya Scuby.  Ours is a black tie event on Friday night. I am going to go for appetizer hour to make an appearance then I'm outta there.

While I know I ADORE the little appies (no fras gras for us give us little hotdogs and chicken on a stick hahahah!) and can eat them instead of being tempted with a drink...I just can't take the chance on staying all night.

So I'll go home and do my shot and just PRAY I don't win the full length full coat or the plasma screen tv that are just two of the door prizes.  Can't win unless you are there.....and that is my luck hahaha.

I think you're smart. We can go to office parties next year and for the rest of our lives. :)