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Avatar universal

2nd Time Around?

Hi All,

I an a long term (22 years since diagnosis) HCV positive guy.  I work in the medical industry, mfr's side, and likely contracted it there.  Origianly, I was a genotype 1a, but have since leaned I am a 1b  (possibly a combination of both).  I have been through the peg-interferon gauntlet without success.  It was, however, known to the university personnel, where I was being treated that I was NOT responding after the initial 12 week evaluation.  But, in their minds, I was healthy enough to continue to provide them data for an additional 30 weeks until I finally had enough torture.  Thanks a**holes!

Several years later, still asymptomatic, I have another doctor, who while not pushing me towards yet another round of treatment which would include incevek, is trying to get me to consider it again.  I feel like I wasted what could have been a productive year of my life, for a fog of misery and lost time.  I guess you can tell that I'm not really keen on doing it again.  That said I do have a relative that has immediate (12 week clearing) on this regimen.  

So with all of this background information:  Are there any initial non-responders that have had success with the triple therapy?  Am I better of waiting for the non-interferon option the future promises?  More importantly, Can I wait?

I am 50 yo male, with a wife and no kids.  Co-business owner with my bride, who will again bear the burden of any impairment the treatment hands me, both at home and at work, (WHICH I HATE).  I also have other family members that rely on me for their livelihood. My Hep specialist told me of some alarming study stats from a European triple therapy trial regarding unexpected mortality rates during the trial.  He would not consider beginning treatment without first getting me on a liver transplant list (I had a MELD score of between 12 and 20, depending on whether I did it myself online at the Mayo site (high) or whether I used the score the Hematologist gave me(low)).  

Again, I am not the one pushing  for this.  Any input would be appreciated.

Thanks.  I'm please to see this list vs. the extreme lack of information that existed previously.  Good luck to you all, whatever you decide is right for you!
Best Answer
Avatar universal
"The likelihood of someone having long term side effects is considerably lower than someone having ESLD/ liver failure/ cancer and many other life threatening diseases caused by HCV "

We just fundamentally disagree on that point.  The question has not been adequately or squarely addressed by the medical establishment.  If one reviews the studies presented to the FDA and journal articles as to complication rates and accepts what the CDC says as to mortality rates, I just don't think the math works.

In my own experience (ie - the number of folks I know who have done INF, the number I know who have cleared without significant side effects, the number I know who suffered a lot from INF, or declared that they would never do it again notwithstanding that they did not clear the virus) INF,

as well as the research I have read in numerous journal articles with a critical eye to what is not being said or addressed,

as well as the anecdotal evidence on this forum

just lead me to a different conclusion.   In fact (and to use the terminology in the warnings written by Roche) "many, but not all" come to the same conclusion.  :-)

It's probably a really close question, so if you have chosen to treat with INF, well, okay.  Do it.  But treatment with INF is not the only rational option.   The doctors say that.

A diagnosis of chronic Hep C infection  DOES NOT mean that you will die from liver disease.  Don't take my word for it.  Read the CDC advice to physicians - "1 to 5% will die"  and note that I've been using 5% (1 in 20) out of fairness and conservatism.    

http://www.cdc.gov/hepatitis/HCV/HCVfaq.htm

How does 1 to 5% from the CDC translate in this forum to "If you have Hep C you are going to get ESLD and die?"  Very hard to understand.  Unfounded fear.  Mistake of fact.


Good luck to all!  
14 Responses
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Avatar universal
Oh, where's the dang delete button when you need one!
Helpful - 0
Avatar universal
Thanks to everyone for all of the feedback and links to more information.  I'll provide a little clarification for the mis-statements of my original post:

I did have a reduction in my PCR during my treatment, just not what was hoped for, i.e. no 2 log drop in 12 weeks,  So I guess that puts me in the partial category.

They did prolong the treatment up to the 40 week mark.  Again, with only a reduction and no real expectation of a UND or SVR.

My side-effects were largely depression, brain fog, nausea, loss of appetite, and muscle/joint aches.  I also became anemic, which seems to have persisted.

Calculation of the MELD score from Tuesday's (2 days ago) lab work was a 13.

Currently, I have an enlarged spleen, low platelet count, WBC, and RBC, and I do have a degree of cirrhosis.  This was confirmed by a biopsy done approximately 1 year before initial treatment.

I did speak specifically about undergoing treatment again and about my reasons for my reluctance to it.  Largely because of the two businesses my wife and I own and the tremendous burden she will undoubtedly be faced with.  We wanted time to try to sell one of them.  He did not try to talk me out of it, but did state that my waiting to begin had the potential risks that were described in the above responses.  I am getting a liver ultrasound (again) next week.

Does this change any of your opinions?  Probably not, but it did help me to think more clearly myself.  So at the very least, thank you for that.

All the best,
  -RepairBill
Helpful - 0
3230925 tn?1397615965
  You reason with your emotions ,you think like a man,you roar like a lion.You're still in the anger  stage because treatment didn't work for you.No need to through out the baby out with bath water because of it.Give it time you will get over it.I'm sure you will get over it and the new meds coming will be the clincher for you.
Helpful - 0
3093770 tn?1389739126

"The doctors say that."

No, the doctors does not say that. This is a very broad generalization which you use with the implication that is the truth where in fact it is not. Which doctors? What expertise do they have? Can you please give specific examples?

"But treatment with INF is not the only rational option" - Can you give an example of other rational option resulting in a positive outcome. Please provide links to studies and results showing the validity of any other rational option


The CDC link you have provided ( and this is only one opinion) states:
What are the chances of someone developing chronic HCV infection, chronic liver disease, cirrhosis, or liver cancer or dying as a result of Hepatitis C?

Of every 100 persons infected with HCV, approximately

    75–85 will go on to develop chronic infection
    60–70 will go on to develop chronic liver disease
    5–20 will go on to develop cirrhosis over a period of 20–30 years
    1–5 will die from the consequences of chronic infection (liver cancer or cirrhosis)

So you forgot to mention the 20 developing cirrhosis who will have a very poor quality of life. And the 60-70 developing chronic liver disease, which translates in poor quality life as well

You also forgot to mention an entire range of life threatening diseases caused and fueled by the hep c such as cancers , kidney disease, autoimmune diseases, etc, all of them with high mortality rate

You seem to focus on the ESLD only and miss entirely all the other effects

"in my own experience (ie - the number of folks I know who have done INF, the number I know who have cleared without significant side effects, the number I know who suffered a lot from INF, or declared that they would never do it again notwithstanding that they did not clear the virus) INF,
"

Please provide numbers. How many folks, what stage they were on. How many months did they treat. What other simultaneous health conditions did they have? It seems to me that you draw preferential conclusion based on personal beliefs rather than actual facts

"as well as the research I have read in numerous journal articles with a critical eye to what is not being said or addressed" - again this is base on presumptions and personal facts interpretation. If you want to be fair to everyone you need to keep a neutral and independent approach

As for anecdotal evidence - I cannot even be bothered considering that as there is no proof that is real

It is ok to have opinions as long as you are not stating them in such a way making them appear that are real where in fact they are not.
Helpful - 0
Avatar universal
How does 1 to 5% from the CDC translate in this forum to "If you have Hep C you are going to get ESLD and die?"  Very hard to understand.  Unfounded fear.  Mistake of fact.

I have brought this up before, but this says nothing about quality of life. Just living and dying. And you flippantly talk about just 1 being saved, I bet you wouldn't be so flippant if that 1 were you. Give it a rest, please...Mark
Helpful - 0
3093770 tn?1389739126
Since my previous post has been deleted I feel obliged to say this again :

"3)  ignore or discount other options one can use to treat, such as no alcohol, getting slim, drinking green tea, eating well, juicing, meditating, exploring the spirituality around one's inevitable mortality, etc., all designed to improve quality of life.  No, they will not clear the virus. But in all likelihood, the virus won't kill you anyway and all you need to do is slow it down. "

This is not true. There is absolutely no such an alternative option to treat. I think that the use of the word "treat" in this context should be done by a medical professional.

Not having alcohol it is not making a difference in hep C progression.

Meditating will not slow down this disease.

Drinking tea will not slow down this disease nor it will improve someone's health.

None of the things you have mentioned mentioned are improving the quality of life of someone having this disease.  None of them are treating. If your opinion is different can you please post links to studies supporting your claim?

Let's make sure that we are all on the same page: Hep C kills people. I think your friend has been extremely lucky that he is alive at 70. That is not the case for many others.

I do not believe that advising people to treat with an alternative approach it is doing a service to the ones who are really needing proper treatment


You also mentioned that some members on the site 1) generate excessive fear and suggest an unwarranted likelihood of ESLD / liver failure (ie "Please try to save yourself"  or "It's certainly better than the alternative - ESLD") if one does not treat.  Such statements are fear-mongering;

But you are using the same fear mongering strategy by saying that interferon is not a good option. The likelihood of someone having long term side effects is considerably lower than someone having ESLD/ liver failure/ cancer and many other life threatening diseases caused by HCV


Helpful - 0
1815939 tn?1377991799
"Are there any initial non-responders that have had success with the triple therapy? "
--------------------------

Yes. There is data from trials that confirm this.

Also, go to frijole's profile page, click on the white sheets, and review her spread sheets. They contain the data for many of us who are treating and who have treated. The data includes information such as previous treatment and treatment response, viral load, liver fibrosis stage, Genotype, treatment progress, length of treatment, and end result of treatment;

http://www.medhelp.org/personal_pages/user/223152


"Am I better of waiting for the non-interferon option the future promises?  More importantly, Can I wait? "
--------------------------

Hector's post covered this pretty well and I agree with Hector.

However, I will add some information about extrahepatic manifestations of Hepatitis C. Many people do not realize how many and how severe these extrahepatic manifestations can be. In addition, some try to frighten others into not treating their Hepatitis C, so it is extremely important and advantageous to be aware of just how dangerous untreated Hepatitis C can be and just how common these extrahepatic manifestations and Hep C related disease processes are.

"Abstract:  Cirrhosis and hepatocellular carcinoma are the prototypic complications of chronic hepatitis C virus infection in the liver. However, hepatitis C virus also affects a variety of other organs that may lead to significant morbidity and mortality. Extrahepatic manifestations of hepatitis C infection include a multitude of disease processes affecting the small vessels, skin, kidneys, salivary gland, eyes, thyroid, and immunologic system. The majority of these conditions are thought to be immune mediated. The most documented of these entities is mixed cryoglobulinemia. Morphologically, immune complex depositions can be identified in small vessels and glomerular capillary walls, leading to leukoclastic vasculitis in the skin and membranoproliferative glomerulonephritis in the kidney. Other HCV-associated entities include porphyria cutanea tarda, lichen planus, necrolytic acral erythema, membranous glomerulonephritis, diabetic nephropathy, B-cell non-Hodgkin lymphomas, insulin resistance, sialadenitis, sicca syndrome, and autoimmune thyroiditis. This paper highlights the histomorphologic features of these processes, which are typically characterized by chronic inflammation, immune complex deposition, and immunoproliferative disease in the affected organ  ...........
Conclusion:  Chronic hepatitis C virus infection is associated with multiple extrahepatic manifestations (EHMs) affecting various organs in the body. While there is some evidence that the virus may play a direct role in HCV-related B-cell lymphomas via direct HCV antigen stimulation of B-cells, most EHMs are generally believed to be secondary to the host immune response to the virus.In some conditions, the histopathologic changes of EHM are related to circulating immune complexes such as type II cryoglobulinemia, and their subsequent deposition in the small vessels and glomerular capillary walls, leading to leukoclastic vasculitis in the skin and membranoproliferative glomerulonephritis in the kidney.Other HCV-associated entities like sialadenitis, sicca syndrome, lichen planus, and autoimmune thyroiditis, while not associated with cryoglobulinemia, appear to be secondary to autoimmune processes resulting in chronic inflammatory infiltrates.In porphyria cutanea tarda, the disease process is thought not to be related to host immune response to HCV, but rather to HCV-associated liver dysfunction.The role of the virus in insulin resistance in HCV-associated diabetes is unclear, but it is thought to be secondary to either viral induced inflammation or direct interference of the virus on muscle insulin signaling.In summary, chronic HCV infection may result in a multitude of disease processes affecting the small vessels, skin, kidneys, salivary glands, eyes, thyroid, and immunologic system. The sequelae of extrahepatic HCV infection are seen histomorphologically as chronic inflammation, immune complex deposition, and immunoproliferative disease in the affected organs."

http://www.hindawi.com/journals/cdi/2012/740138/

http://www.ccjm.org/content/72/11/1005.full.pdf

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf


Best of luck.
Helpful - 0
179856 tn?1333547362
MELD score between 12 and 20 yes juicing really will make a difference.

Please Bill do not listen to this person.  Please.
Helpful - 0
179856 tn?1333547362
1) generate excessive fear and suggest an unwarranted likelihood of ESLD / liver failure (ie "Please try to save yourself"  or "It's certainly better than the alternative - ESLD") if one does not treat.  Such statements are fear-mongering; "

Please Bill disregard all comments by Rambleon and listen to your DOCTOR and the advice of KNOWLEDGABLE people who have been in the same shoes as you.  

Rambleon why on why do you dispense such nonsense? IF this man is being told about transplant lists and MELD scores do you NOT think the doctors believe he does NOT have time to wait? Would you prefer him to sit at home and not do treatment  - he never said that treatment almost killed him he said it did not work.

Even worse case scenario he had really bad sides, dont you think DEATH is a worse side effect?

Only his DOCTOR can evaluate him you have NO right to assert we are all fear mongers around here.  Most of us are just more well educated and more even keeled than you are.  This man is NOT in stages except for cirrhosis for God's sake man be reasonable and stop this insanity before you really hurt someone.
Helpful - 0
446474 tn?1446347682
Hi! Thanks for the information about your situation.

Are you a previous partial responder or a null responder? You can tell from you viral load drop when you treated previously. That is important for predicting your chances of cure with triple drug therapy.

I am afraid if you have a MELD score of either 12 or 20 you need to treat ASAP. The MELD score is no mystery just get your latest total bilirubin, creatintine and PT/INR and plug in the values here.
http://optn.transplant.hrsa.gov/resources/MeldPeldCalculator.asp?index=98
Make sure you are entering the data in the correct units.
This is the official MELD score used for determining who gets a transplant first.
That's it. That was your MELD score when the blood test was taken. It will very over time but will give you a good idea of how advanced your cirrhosis is.

Getting you on the transplant list is very important and is standard procedure at transplants centers that are about to treat patients with complete cirrhosis. Why? Because a patient with a MELD score of even 12 have their liver so damaged that hep C treatment can cause decompensation of cirrhosis (ascites, bleeding varices, HE, etc) or in a small group of patients even liver failure. If liver failure should occur you will need a life-saving transplant very quickly. That is why being on the waiting-list is a critical precautionary measure that any good hepatologist should do. I am sorry but it appear you are unaware of the gravity of your liver disease. I understand that you are asymptomatic but haven't you read that untreated hepatitis C can lead to cirrhosis of the liver and be fatal?

A few point to keep in mind as you decide to treat or not treat...

* If you don’t start treatment soon in time you will be unable to treat your hepatitis C and will need a liver transplant to survive?

* You talk about a year wasted doing treatment. Getting a liver transplant can take years and you will become disabled and unable to do anything. You will likely suffer multiple life-threatening complications and will be hospitalized on and off.

* You unfortunately don’t have time to wait for the new treatments for genotype 1s without interferon, as they as at least 2 years off. The clinical trials for cirrhotics are limited. If the transplant center can get you in one great. The thing is you need to treat very soon or you may lose that option forever if your decompensate. I would seriously suggest you at least try treatment with a PI. Otherwise you are sealing your fate for a number of years to come and for the rest of your life as after a transplant you will have to take meds every day to stay alive. Transplant is not something anyone would willingly choose if they had any other options.

Unfortunately cirrhotics tend to have worse adverse events then others with lesser liver disease but we have to deal with your liver disease as it is now.

If you don’t try treatment now then you are very likely to decompensate and not be able treat your hep C until after a transplant. Usually if your MELD score is above 20 a transplant center will determine you are too ill to handle treatment and they will not treat you with interferon treatment.

At one time or another you will have to cure your hep C. Transplant does not cure hepatitis C. You will still need to cure your hepatitis C or it can destroy your donor liver in only a matter of years rather than decades.

I hope you realize your options are running out and the longer you wait, the less options you will have. Unfortunately I know this from personal experience. I was a null-responder to interferon treatment, then I decompensated 2 years later and became unable to work or do much of anything. In 2011 I developed liver cancer and have had multiple tumors so now I am end-stage and waiting for a transplant in a few weeks to save my life. Otherwise it is very unlikely I will live through this year.

All I can say is you will never ever want to go through what I and my transplanted friends have. We all have almost died multiple times and have suffered beyond anything that we ever imagined was possible. I don't want this to happen to you.

Please try to save yourself while you still have the option to at least try treatment. The worse you can do is fail. And that will be obvious probably by week 4. You are too young to have this happen to you. If you don’t at least try treatment and end up with having to have a liver transplant you will regret it for years to come.

Sit down with your doc and have him tell it to you straight about where you are, what options you have and what you prognosis looks like and he will confirm everything I am saying.

Good luck to you!
Hector
Helpful - 0
Avatar universal
Null Responder: A null responder is someone who achieves little or no decrease in hepatitis C viral load during HCV treatment. Null responders are highly unlikely to respond to re-treatment with an interferon-based regimen.

Non-responder: Often referred to as a "treatment failure," a non-responder is someone who does not have an EVR or, if they stay on treatment for 24 weeks, does not ever have a 2-log (99%) drop in hepatitis C viral load or undetectable HCV RNA during hepatitis C treatment.
Helpful - 0
Avatar universal
Welcome here, when you say your Hepa first wants to get you on a TP list, and he checks your meld score it seems you must be cirrhotic. This is something you must take serious and try to do something about. If you are a true non-responder then a clinical trial with these new interferon free meds should be something you should look into as true non-responders did not do all that well in the Incivek trials, and add to it you seem to have cirrhosis is another minus.

I hope you take this serious and do some research and talk with your Hepa as things will only get worse if you do not rid yourself of this.... Wishing you the best.
Helpful - 0
766573 tn?1365166466
Several years later, still asymptomatic, I have another doctor, who while not pushing me towards yet another round of treatment which would include incevek
______________________---

Greetings and welcome to the forum

I feel like I am missing something. You are asymptomatic yet mentally computing a MELD score. A score typically used to predict mortality over a three month period...in hospitalized patients, no less. Seriously, I usually hear MELD associated with (or close to) end-stage liver disease so I feel compelled to ask what is your stage of fibrosis.

That your doctor would not consider treatment without first getting you on a liver transplant list tells me I should probably leave advise to those who have more experience with advanced liver disease since treatment issues are potentially more complex.

I am a prior partial responder who had mistakes made during my first round of treatment as well. In retrospect I blame myself since I was so uninformed. Plus it is not like we had much choice back then since there was only one treatment option for the lot of us. Still, I am sorry you treated for 30 whole weeks with what apparently was only ever a negligible drop in viral load. The 19 weeks I did was hard on me so I can well appreciate your reluctance.

I won't candy coat it: triple therapy (with Incivek/Telaprevir) is 100% different than the dual therapy we had back in the day. The first 12 weeks can be debilitating and because of that I think it helps to have plenty of support and a back-up plan just in case you have off days.  Having said that lots of people continue to work full-time on treatment.

I can't speak to the mortality rates of triple therapy or the mortality rates of Hepatitis C in general. I would focus on what possible treatment entails based on your medical condition.  There is the potential for an insidious rash, diarrhea, nausea, anemia, low platelets and indifference. I will try to find a post that lists the %ages of side effects since not everyone gets them.

Even though this treatment is totally do-able. It would help to have a little clarity on your medical status as I do not want to mislead you. One thing I will say I firmly believe it that when treating with Incivek it is crucial to anticipate the side effects and treat them aggressively.

There is a lot of support on here. I encourage you to stick around and read a few posts and see what treating is like these days.

Here is a post that may offer insight until others log on:
http://www.medhelp.org/posts/Hepatitis-C/Scared-of-incivek-treatment/show/1741926

Helpful - 0
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