tx can make hcv worse?

[JungleHeart]

(first, about that VL mystery - omg - I was given copies of my and two other people's labs - can you believe it?  Yes, you can.  So anyway, my VL is 1,300,000 doubled since May - not sure if there's any significance to that other than a baseline # for tx)

I was told by one of my doctors that tx could make the HCV situation worse.  I have read that somewhere as well.  If that is the case, (1) how would one know before it's too late? and (2) would this not be taking a huge risk for someone who is cirrhotic?

This is troublesome to me.  Do I take a risk and treat and maybe go into failure?  Or do I not treat and just....... wait for........ end stage anyway but maybe later?

[JungleHeart]

I can handle 12 weeks of Incivek if it comes to that.  I guess.  Who knows?  Thx

[orphanedhawk]

They do the Incivek for 12 weeks then continue with interferon and riba for the duration. How long generally depends on when you are UND and if you have cirrhosis or not.

[JungleHeart]

Is the Incivek just for 12 weeks?  My brain is so saturated with information, I can't remember.  I assume you are a 48 weeker?

[JungleHeart]

THANK YOU!  So right you are.  Doing nothing means only one outcome -- ESLD.  Maybe in a year, maybe two, maybe five, who knows?  You have helped me tremendously.  Yes, tx can make things worse, but right now it seems that I have to try.  New bx, maybe Fibrosure if they had the equipment here ~ small town areas sometimes don't.  Go from there.

Four rounds of tx for you!  Wow, do I ever admire you!  How old are you, if I may ask.  I'm 65, so that concerns me, but you have given me the boost I needed.  Just go ahead with it.  Treat.  Stop procrastinating.  The docs will pull me off if things get too bad.  Sofusovir is the name of the new tx with no Interferon.  Hopefully out in a couple years.  I wanted to wait - mainly because of current use of InterFEARon.  But I'm kidding myself.  

[his3707]

I certainly dont have any knowledge in this area at all  (except what I have just learned in this thread) but I just wanted to say that It is hard to hear you , Big Daddy, coeric, Hector,  ob1,are dealing with cirrhosis, cancer and  problems getting cured of the HCV.   You are all such heros in my book.  I will be sending prayers and positive thoughts your way!  
lydia

[BigDaddy_59]

I am on my 4th round of tx (3x relapser) with Incivek.

I have cirrhosis and my hepatologist did test to make sure I could stand a transplant if I decompensated. (ev erything looks good there).

In my case (and something that everyone needs to decide for themselves), I think the risk of decompensating vs the chance to SVR was worth trying one more time. I don't want to have to go through ESLD (although I might anyway) and since there is a chance that I may avoid it, I felt the risk was worth it. I know that if I do nothing, most likely I will get ESLD.

My biggest fear of the ESLD is not dying but from the hepatic encephalopathy as I am afraid that the personality changes will alienate my from my 5 and 12 yo kids.

For me,  the choice to re-treat or not was a no-brainer, especially with the success that the DAA are having.

It is a personal choice that each one of us has to make and with the help of the support on here, we can make an infromed decision.

And I agree with you, Hector IS the best non-Hepatologist hepatology expert around!

Chris

[ob1cannolli]

Iam 60 in NOV.......I HAVE STAGE 4 CIRROUSIS and of corse theres risks but if you dont have decompensated liver issues its your call to know what you think is best for you .......what if it cured you?? benn und since 4th wk.....geno 1 inciviek is 12 wks then you should be fine, your choice.

[JungleHeart]

Done

[orphanedhawk]

Not a bad idea.

[JungleHeart]

Should I start a new thread re. this bx report?

[JungleHeart]

Ya ready?  Gish's pathologists' comments (anyone else welcome to chime in ... please)

COMMENT
Provided for our review is a suboptimal fragmented liver biopsy with only five portal tracts.  Portal tracts are remarkable for inflammation comprised predominantly of lymphocytes with occasional scattered eosinophils and plasma cells.  Scattered acidophal bodies are also noted throughout the biopsy specimen.  Please note that this biopsy is limited and thus grading may not be accurate.  In this limited, fragmented biopsy, trichrome stain shows features worrisome for bridging fibrosis, possibly cirrhosis.  

Grade:  7 of 18 points

Stage:  see comment

Portal inflammation (Pl): 3, Moderate/marked, all portal areas

Focal (spotty) lytic necrosis, apoptosis and focal inflammation (LA); 2, 2-4 foci per 10x objective

Periportal or periseptal interface hepatitis (piecemeal necrosis) (lA): 2, mild to moderate (focal, most portal areas)

Confluent necrosis (CN): 0, absent

Fibrosis:  see comment above

Adequacy:  Length of biopsy is 1.3 cm.  Number of portal triads: 5

Steatosis:  1-% steatosis with azonal distribution

Stainable iron:  not provided for our review

PASD:  Not provided for our reveiw

~~~~~~~~~~~~~~
Sounds very ominous to me.  I am confident that these guys and gals did a bang-up job with what they had.  And now that I actually type this up, there is no way I can be treated by anything less than a hepatologist.  Now I have to figure out how to get to one.  My husband can drive me to Vegas.  I'll see if Dr. Gish recommends anyone there.

I'm going to the Havasu I.D. on Monday anyway - get a bx done down there.  Then ....... ????

[JungleHeart]

You are correct.  Gish thought maybe 2.8 fibrosis but was adamant that the bx slides were critical to diagnosis - and of course they were deemed to be inadequate.  Gish's team did a great job with what they had.  I now do have the whole fax from him of their findings.  Will post pertinent parts for our beloved Hector and anyone else to ponder.

[JungleHeart]

You are the best.  We can always count on you.  Thank you.

[JungleHeart]

You hit the nail on the head as to some of the reasons the local Infectious Diseases doctor is unaccepable to me.  

I have no confidence that he has my back.  He has treated "maybe 50" patients, only with Incivek (but from what Hector wrote, Incivek might be best if I'm cirrhotic) ~ but 50 patients is sure as heck not many.  I cannot reach him in an emergency.  My pdoc would do the rescue drugs, but actually, that's fine with me.  I do not feel that the I.D. is well informed with the new tx protocol. .He and I have no "click" at all.  He is evasive because... he doesn't know.  Two weeks ago I pointed out to him the inadequacy of the local bx - his hospital.  He was supposed to contact the radiologist.  As of yesterday he hadn't.  Nope.

[JungleHeart]

ceanothus - yes, it's closed.  Got the official notification letter from his UCSD clinic this week.  They are sorry for the inconvience, blah blah blah and we are welcome to be seen at the San Diego clinic. There is a number to call for assistance; guess I'll call it.  I sure can't go 400 miles to SD.  As I said in the previous post, I don't even have a car anymore.

I'll get the new biopsy done, finally find out my exact grade and stage - and if I'm cirrhotic - I'm in trouble in more ways than one it would appear.

[JungleHeart]

OH - not financially possible.  That would be a year of my husband supporting two households, albeit a small apt. for me.  In any of those areas, no small apt. is anywhere near cheap.  We/he can't do it.  Also, if I were somewhere else, I'd have no help.  I have no family - no kids, no parents, sis and brother estranged from me.

And now I don't have a dam@ car.  We had to trade in our two for one - for financial reasons.

I have certainly thought about that idea though.  If only.

[ceanothus]

I'm so sorry you are continuing to have these constant obstacle and complications popping up! I can't add anything to the very thorough replies above, but I do just keep having one little thought that keeps popping up in my mind. It's probably not really the problem, but are you absolutely sure that Dr. Gish is no longer seeing any patients in Las Vegas? The fact that his office never informed you makes me wonder if there could be a misunderstanding. Maybe you were told the office was closed because you called on a day when it was closed, or maybe because they relocated to a different building, or maybe just because an idiot answered the phone that day? I hope you have called one of his other offices to verify that he isn't seeing patients in Las Vegas anymore and to ask who he recommends that you see. Since he had accepted you as a patient I think he has some responsibility to at least offer some guidance to you for your continuing care.

[coeric]

at the beginning of treatment my bilirubin increased from about 1 to 2.5.  interferon increases liver inflammation, so for the first couple of weeks the scarring in the liver may have increased. fortunately the incevik quickly reduced the viral load thus reducing the amount of inflammation caused by the virus.  before i started treatment one of the hepatologists i saw recommended the incivek over victrellis because with cirrhosis it might be an advantage to bring the viral load down as quickly as possible. and if they had to discontinue treatment early, the doc thought i might have a better chance at SVR.

for me the anticipation of treatment brought on much anxiety.  and it had to be difficult for you to have Gish close the Las Vegas clinic.  if i recall correctly he thought that based on your blood work you might be less than stage 4.

thank you Hector for the useful articles.
as always
eric

[orphanedhawk]

If it's financially possibly, you might consider renting an apartment for a while closer to a good hepatologist for the duration of your treatment. That's what I did but I'm used to being a nomad :)

[HectorSF]

Swimmer made some good points. 'the more liver damage one has the closer you will need to be monitored by an experienced and knowledgeable expert in liver disease and cirrhosis (a hepatologist).

First and foremost if you have cirrhosis, you should only be treated by a hepatologist who is experienced in treating scores of patient's with hepatitis C when they have cirrhosis of liver. A gastro does not have the experience, expertise or resources to manage what can happen to a cirrhotic during hepatitis C treatment over a 48 week period.

Assuming that your liver disease if not too advanced to treat, you will be monitored closely for signs of your liver disease getting worse as indicated by blood levels becoming dangerously abnormal. I have cirrhosis and I have blood tests every week to look for any signs of danger that my treatment could be causing. Blood level will probably indicate problems before you feel the effect yourself.

'I was told by one of my doctors that tx could make the HCV situation worse.'  
That is correct. Treatment can cause decompensation of cirrhosis (ascites, bleeding varies, encephalopathy is a small portion of patients. Treatment can cause liver failure in an even smaller percentage of patients. If this should happen you will need a transplant very soon. This is why patients with advanced cirrhosis may be listed for transplant before starting treatment. It is a backup plan. Which can only be done at a liver transplant center with the assistance of a hepatologist.

If that is the case, (1) how would one know before it's too late?
Because you are being monitored closely. If a hepatologist saw signs of decompensation or liver failure they would stop treatment immediately and try to stabilize your condition.

(2) would this not be taking a huge risk for someone who is cirrhotic?
All cirrhotics are taking a risk. It is a risk if you do treat and a risk if you don't. We know what will happen if you don't treat. Your liver disease will progress to the point you will no longer be able to treat your hepatitis and the only option at that point will be a liver transplant. Whenever a patient has progressed to cirrhosis they are in a risky situation. In time they will develop life-threatening complications and need to be hospitalized on an ongoing basis until they get to the top of the transplant list which could take a long time. Also having cirrhosis we all have an increased risk of liver cancer who's only cure is a transplant.

Most cirrhotic patients decide to treat because they understand that without treatment the will get progressively more ill and become disabled. At least we can say we gave it our best shot if then we fail treatment and have to have a life-changing liver transplant. While the chances of SRV are lower than in patients with less liver disease, many of us think that any chance no matter how risky is worth it to avoid the inevitable and slow nightmare of End-Stage Liver Disease.

So find the best hepatologist you can so you will have the best chance of success treatment while being closely monitored for any signs of decompensation.

Hepatitis C viral infection in patients with cirrhosis
Clinical Liver Disease
Volume 1, Issue 3, pages 65–68, July 2012
Copyright © 2012 the American Association for the Study of Liver Diseases

'The eradication of HCV is the only therapeutic intervention that can halt disease progression and improve the quality of life in infected patients. A recent Markov model constructed for a cohort of 4000 patients with genotype 1 disease found that in comparison with no treatment, HCV therapy for patients with compensated cirrhosis (Child-Pugh class A) saved $55,314 and led to a 0.950 increase in quality-adjusted life years; this resulted in 119 fewer deaths, 54 fewer cases of HCC, and 66 fewer liver transplants.5 Successful antiviral therapy has been observed to reduce the incidence of complications from progressive disease both before and after liver transplantation.

The care of patients with HCV cirrhosis involves the prevention and management of recognized complications. Furthermore, those with advanced fibrosis and cirrhosis are most in need of HCV therapy; however, interferon-based antiviral treatment in these patients is challenging because of the frequent comorbidities affecting patient adherence and tolerance, the risk of serious adverse events, and the hyporesponsiveness to therapy. Bridging fibrosis and cirrhosis are negative predictors of HCV treatment outcomes. Additionally, patients with cirrhosis are often male and older and have comorbidities (including diabetes mellitus, obesity, and alcohol consumption) that adversely affect the efficacy of antiviral therapy. In patients with compensated cirrhosis, the sustained virological response (SVR) rates with pegylated interferon in combination with ribavirin range from 10% to 44% for genotypes 1 and 4 and from 33% to 72% for genotypes 2 and 3, whereas in patients with decompensated cirrhosis, the SVR rates drop to less than 16% for genotypes 1 and 4 and to 44% to 57% for genotypes 2 and 3.

In patients with cirrhosis, treatment with either boceprevir or telaprevir in combination with pegylated interferon and ribavirin is recommended for 48 weeks; the SVR rates in treatment-naive patients range from 50% to 60%. However, SVR rates are lower with triple therapy in treatment-experienced patients who have cirrhosis (primarily prior null and partial responders), whereas relapsers have SVR rates comparable to the rates of patients without cirrhosis. Patients with cirrhosis are not eligible for response-guided therapy with nonstructural protein 3/4A serine protease inhibitors, and treatment is recommended in this cohort for a fixed duration of 48 weeks with both boceprevir and telaprevir regimens.'

http://hepatitiscresearchandnewsupdates.blogspot.com/search/label/cirrhosis#.UFLUlLJlQzI

Good luck to you!
Hector

[1swimmer]

In order to start tx you'll need to know that this new doc has got your back. Make your list now. Find out if he/she has treated w/ the new drugs. Can you reach him in an emergency. Will he use rescue drugs. How informed is this doc with tx protocol.
Try not to fret about the what ifs and focus on this appt. Be prepared. If this is not the right doctor... On to plan b. Stress is only going to make you ill; I know by experience. It's hard sometimes, but you have to get out of your head, and try to get a good nights sleep.
C

[JungleHeart]

I'm just so frustrated.  The only good doctor I've been able to find, and he was the best, is no longer available to me.  If the new doctor on Monday doesn't seem competent ~~ and he's not local, the local ONE scares me with his sloppiness, I'm not sure what to do.  Yes, I'd need to be monitored carefully.  If I don't have access to a doctor who really knows what they're doing, then....   well, ya know, I'm really tired of this.  This is what happens when I didn't take a shot at the double when my grade and stage were low - and now unexpectedly find that my stage and grade have zoomed 10 years later ~ when I'm 65 and nowhere near a large city/hepatologists.

Frustrated, scared, tired.

[1swimmer]

Hey there, glad the labs got cleared up. I'm sure you'll be hearing from someone that is cirrhotic and treated. I do understand though, that the more liver damage one has the closer you will need to be monitored by your doctor. I would want to have standing orders for very regular labs, in hand. Many people here, have made lists of important info to get hold of; you may want to view some old posts of questions to ask doctor.
These are some dang serious drugs, and definitely everyone here has had concerns prior to starting tx. There are lots of warriors out here. Good luck with your plan of action.
C

[8nickers8]

There is actually a post up there somewhere that addresses this but in a nutshell, if you go through a treatment like, for example, Peg Interferon and Ribavirin and you leave the treatment before the virus is killed OR if you go through treatment and relapse, the virus "rebounds" and strengthens and can be harder to treat the next time.  From what I have read just within the last week, the rebound effect isn't happening with 7977.