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173930 tn?1196338398

For those post tx-Post Interferon / Ribavirin Treatment Symptoms Survey

found an interesting survey for those post tx,thought i would share it

All those post tx are welcome to share their thoughts and experiences on the same

Heres the link below
http://www.zoomerang.com/web/SharedResults/SharedResultsSurveyResultsPage.aspx?ID=L22KYULCZHEN
96 Responses
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Avatar universal
Well that was certainly a lengthy post filled with all sorts of interesting observations, statements and conclusions. I’ve apparently really hit a nerve with you, and being that you’ve fairly recently wrapped up 72 weeks of treatment (according to your profile) I guess hitting nerves is still pretty easy to do at this point in time. As far as the voluminous content of your various posts, I’ll just hit the highlights where you seem to be actually speaking for me or about me to dointime:

Valtod quote: “But her judgment was biased by her existential circumstances. Actually, this was precisely Mre's argument against Jim when he wrote:  ‘Whether you realize you're doing it or not, you are doing it…’ However, ironically, he doesn't seem to notice that the same argument applies (and to a greater extend, as I tried to suggest) to his own assertions.”

You’re wrong, my comments were not “precisely” an “argument against jim” and your silly and nonsensical analogy between myself and Marie Antoinette is, to be kind, not well thought out. Jim here has repeatedly over and over again (on several threads) made the implied or outright claim that an HCV+ person is more likely to come out of successful treatment (i.e. after achieving SVR) either feeling worse or feeling the same compared to how they felt prior to treatment. In other words don’t look to an SVR as being able to resolve extra-hepatic symptoms commonly associated with a longstanding chronic HCV infection. Jim said in just this thread alone:

“What that means is that around 2 out of 3 people felt either worse or no different after treating. This should be a reality check for those who treat primarily because of the so-called extra-hepatatic symptons, i.e. to feel better. This study and anecdotal reports here suggest you will not feel better after treatment…where I come down is that the primary reason is to regress or stop liver damage with the trade off that you probably will feel no better after treatment, possibly even worse…If you're lucky you come out feeling the same. If not, you come out worse.”

So the soup du jour here is jim’s repeated and fairly emphatic stance that if you are chronically infected with HCV and are experiencing extra-hepatic symptoms, in all likelihood after SVR-ing you’ll either feel worse or the same as you did prior to treating. There will probably be no resolution of your extra-hepatic symptoms, you will probably not feel better after getting your SVR. And the reason jim suspects this is true is because that’s what happened to him and that’s what he’s observed others saying here and now that’s what this survey is suggesting. Well, the specific intent of my responses here were (1) to make the obvious and true point about the very questionable legitimacy of the substantiation that jim references and discusses. And more importantly (2) to directly provide a seldom heard counterpoint that I strongly suspect is grossly underrepresented for the reasons previously stated (especially on internet forums like this). Y’see, I am one of the people who didn’t feel good prior to treatment and haven’t felt well for a long, long time as a result of HCV. I know that many who are infected say the virus doesn’t bother them, but for myself and many others, it does (or did). So it’s important to know for the symptomatic folks (as it was for me 10 years prior to treating) if there’s a good chance that there could be a resolution of HCV related symptoms after achieving SVR. THAT’S why it’s worth talking about, and THAT’S why I responded with my statement. Not to express personal bias or attack jim or unfairly denigrate those who do feel worse after treatment (even if SVR is achieved).

Valtodquote: “Mre's statements boil down to this:  1. Online polls are not scientific (because they're not a random sampling and do not include control groups).”

No, I didn’t state that all online polls are not scientific. If you have trouble understanding what I said, then I suggest re-reading what I did say. And if I haven’t spoken clearly on something or you need clarification, then simply ask. Please don’t say I said something that I did not, especially if it’s unreasonable or obviously wrong. Can you say “straw man?”

valtodquote: “2. Mre feels great (he's an optimist), while Jim doesn't feel great (he's a pessimist).”

Just because I feel great doesn’t mean I’m an optimist. And just because jim doesn’t feel so great, that doesn’t mean he’s a pessimist. You’re taking a silly and wrongheaded tack here. But while we’re on the subject, a pessimist is someone who always predicts or expects the worst outcome. An optimist is someone who always predicts or expects the best outcome. Optimists and pessimists are always looking to the future and deciding what that future may hold for their respective selves. Both of us are no longer anticipating the future or what its outcome may be any longer (be it good or bad) when it comes to the issue of SVR and QOL post tx (although I’m still too close to the starting gate for a fully fleshed out opinion just yet). So both jim and myself are simply reporting what we are actually experiencing NOW. We’re not providing a forecast of how we think we’ll feel after achieving SVR, we’re simply telling you how we DO feel as in right now, real-time. Gettit Freud? Furthermore, isn’t it possible that when someone says they feel good, they actually…hold on a sec here…might actually, truly, honestly and legitimately feel good? And isn’t the reverse also possible? Someone who says they don’t feel good, actually sincerely means it and is not some kind of “ist”, where they either have a non-factual emotional slant one way or the other?

Valtodquote: “3. Pessimists are overrepresented and they cherry pick data to prove their agenda.”

This isn’t my point and again the whole optimist/pessimist thing is wrongheaded, illogical and is not what I was saying (that’s why I never mentioned optimists or pessimists in my original statement).

Valtod quote: "Online polling, as any other set of data, including informal interviews and personal records, can be and is a valid source of scientific discourse and conjectures."

Sure, you can use informal interviews, personal records and “any set of data” to make conjectures. You can also use the Jerry Springer show, the Enquirer and what your neighbor said down the street. You can use whatever you want, but you’re wrong to assert that you can assemble some kind of hodge-podge assortment of “data” based on online polls and opinions and produce something that would hold water during any real scientific inquiry or “conjecture.” And what is conjecture anyway? Oh that’s right, it’s…well, it’s just conjecture, isn’t it?

Valtodquote: “ (mrequote)They are not a true *random* sampling of all people within the general population with HCV who have or have not treated successfully."  This is a fallacy of scope.  Neither the pollsters, nor anyone else claims that this is a sampling of GENERAL population. Obviously, the scope of the sampling is much narrower; however, within its scope, it IS random.”

You’re wrong, it’s not a fallacy of scope.  To reiterate what my original response to jim was about, it’s about jim’s repeated assertion that those who SVR usually either feel no different or worse after completing treatment. And jim referenced the study as a part of his substantiation that this is true. So my quibbling with the scientific legitimacy of the online poll isn’t with the pollsters per se, it’s with jim’s use and interpretation of it as a partial buttress for his post tx “I feel bad” supposition. (cont...)
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Avatar universal
When I reread now what I wrote late last night, I agree that the pessimists/optimists opposition is not the best choice of words. I started with them when I was talking about our innate optimistic bias (wishful thinking), which should be countered with some rational (realistic) considerations, especially in any serious decision-making process. But in the rest of my post, where I deal specifically with improved vs. lost QOL post-Tx, the optimists/pessimists labels do not work so well.

I also considered myself an optimist - at least until the depression during Tx really started kicking in. In fact, although I'm a very rational person, I made some bad business and financial decisions in the past because of my own bias in expecting positive outcomes (at least for me :-) Perfectly rational agents making irrational decisions - I've been interested in this issue for many years.

I have a degree in Physics. I've worked in different fields and businesses where proprietary computer systems and computational modeling are involved. Now, because of HCV and the Tx, I only work part-time as consultant. I've always been curious and have many (probably eclectic) interests.

Here are some books that inform and influence my views:
Modeling rationality, morality, and evolution
Complex adaptive systems: Computational models of social life
Choices, values and frames
Evolutionary origins of morality
The innate mind: structure and contents, culture and cognition
Deep simplicity: Bringing order to chaos and complexity
Into the cool: energy flow, thermodynamics and life
In gods we trust: the evolutionary landscape of religion
The stag hunt and the evolution of social structure
The emotion machine: commonsense thinking, artificial intelligence and the future of the human mind
Economics as Religion: from Samuelson to Chicago and beyond
Origin and evolution of cultures
The logic of failure: recognizing and avoiding error in complex situations
Propaganda and the ethics of persuasion
Collapse: How societies choose to fail or succeed
Philosophy in the flesh: The embodied mind and its challenge to Western thought

Best regards!

Helpful - 0
Avatar universal
Bringing the above discussion down to the level of treatment decisions and advice here on the forum. What I'm trying to say is that I don't think people are being done a service when advised "the earlier you treat the better your chance of SVR" which while of course has elements of truth, grossly oversimplifies the situation with what is generally a very slow moving disease. It also fails to take into account drugs like Telprevir which are already demonstrating double the SVR rate. So is waiting longer (for the new drugs for example) really decreasing your odds of SVR or perhaps could it potentially be increasing the odds? I'm not trying to toot my horn here, but I try when possible, in addition to my opinion,  to lay out the complexities of the treatment decision. To parapharse an old expression -- the truth is in the details.

-- Jim
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Avatar universal
Good morning as well Drofi and thank you very much for the nice words.

Here is what the benchmark Win-R study had to say on this issue. It appears that the point in discussion is more specific to Win-R.  I also might add that this same point was related to me as early as last year by someone who runs many of these major trials. Again, not having full-text of both studies in front of me, I won't debate whether bridging fibrosis is a negative predictor -- although again both Win-R and a very eminent hepatologist told me it wasn't -- but the drift here (not picking on you btw) is often the general statement that the earlier you treat, the better your chance of SVR. This simply isn't true and I feel leads many people to incorrectly weigh the risks and rewards and therefore possibly make the wrong treatment decision for themselves.

From Win R:

"...In conclusion, the authors write, “WBD of RBV is important to increase SVR in patients with more advanced stages of liver disease. However, overall only cirrhosis is a negative predictor of SVR when individual fibrosis stage and SVR is evaluated.”"

http://www.hivandhepatitis.com/2006icr/ddw/docs/052306_e.html

---------------------------
Valtod,

Very well done, and I shall take a look at the book you appear to be recommending. If I may ask, what line of work are you in?

I do understand why you place me as "pessimist" within the confines of this discussion, but outside of Hep C, I consider myself quite an optimist. Let's just say that the interferon (knowledge and personal experience) has made me into what I consider a realist.

I'll add a couple of more reasons why we "pessimists"/realists may be under represented. First, self validation -- I did it (treated, so it must be the righ tthing to do since I'm a smart, rational individual who makes smart, rational decisions. And second, the ability to rationalize what others might consider serious consequences of tx, i.e. sure I screwed up my entire QOL, but it was worth it because I'm not going to die of HCC or liver failure -- as if that was a forgone conclusion in many.

Thanks again for your input.

-- Jim



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Avatar universal
I think that for an SVR the analysis of tx and sides becomes less personal more theoretical once the virus is gone - (not including the always entertaining analysis of whether it is in fact it is gone.lol) I guess what I mean goes back to what I have said before about living with the virus and with tx for so many years.   I think that losing the virus has its emotional baggage as well.   While I realize that not all sides come from my head, I do realize that I have become quite the professional patient.   I dont know anyone who pays as much attention to this health as I do.  I dont know anyone my age who goes to as many docs or takes as much medication as I do.  Does this heightened state of awareness come from need or from habit.  Does coming back here and reading these various posts help or simply add to the anxiety and feeling of dread?   I know how much these feelings added to the negative tx experience.  

I guess what I am saying is that if I wasnt SVR I would be treating or getting ready to treat.   I wouldnt be worrying about how bad I would feel when I was cured.  I NEVER believed it would work anyway because it (tx) usually didnt.  Times are changing however and new things are on the horizon but new things have always been on the horizon.  I treated when I found out I had the virus.  I treated again after that failed.  I treated again after that failed.   I finally treated and it worked.  If it didnt, I would treat again.   I wouldn't think about it for a minute and I am and have been stage 2 throughout this.  I think I stayed stage 2 because I treated.   A friend, my best fried, died a couple of years ago.  He never treated.   The other folks I know who dont treat seem to be fading - just my opinion.   Only once did I wait for tx, in retrospect it was the most awful period in my life.   I needed to be doing something about the virus - taking action.   I guess there are a variety of actions you can take but the combo was the action that got rid of it.   I love the fact that I can analyze this whole thing from a bit less scary of a position - it is quite a luxury after all these years.  On some level I dont feel I deserve it and am not convinced it is real - therefore my post tx sides serve as some sort of continuing payment for that which was so graciously and wonderfully given to me.  How that adds to all this I have no idea.  
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158241 tn?1237719523
Good Morning Jim,

before I come back to the scientific questions, please accept my honest appreciation for all your good work. It is not my nature to tell everybody each time, when I agree with you, and this happens nearly always.

You wrote:
drofi: The chance to get SVR decreases with each year of waiting
-----------------------------------------------------------------------------------------
"This is simply incorrect and based on older information and is very misleading for anyone trying to make a reasonable treatment decision.
All else equal, all stages  (except stage 4) have an equal chance of SVR."

Here is an international publication from 2007 about this. 2007 is not "older."

All the best, drofi

Scand J Gastroenterol. 2007 Feb;42(2):247-55.

Prediction of sustained virological response in chronic hepatitis C patients treated with peginterferon alfa-2a (40KD) and ribavirin.
Foster GR, Fried MW, Hadziyannis SJ, Messinger D, Freivogel K, Weiland O.
The Royal London Hospital. London. UK.

Objective. Patient- and virus-related factors influence the response of patients with chronic hepatitis C to interferon-based therapy. The purpose of this study was to model the probability of achieving a sustained virological response in individual patients, taking into consideration various predictive factors.
Material and methods. We combined data from two randomized, multinational trials in which patients received peginterferon alfa-2a (40KD) plus ribavirin. The logistic regression model for patients infected with hepatitis C virus genotype 1 included age, viral load, histology, alanine aminotransferase quotient, body mass index, treatment duration, ribavirin dose and adherence.
Results. In the genotype 1 model, varying baseline factors had a striking effect on the probability of sustained virological response. A dramatic difference in the probability of sustained virological response was seen in a series of hypothetical patients in whom five factors were varied to represent best and worst case scenarios. The best case scenario (age 20 years; no cirrhosis/bridging fibrosis; alanine aminotransferase quotient =7; body mass index 20 kg/m2; viral load 40,000 IU/mL) was associated with a 97% probability of sustained virological response, compared with 7% in the worst case scenario (age 60 years; cirrhosis/bridging fibrosis; alanine aminotransferase quotient =1; body mass index 30 kg/m2; viral load 9,000,000 IU/mL). Both adherence to treatment and achieving an early virological response increased the probability of sustained virological response.
Conclusions. In treatment-naive patients with chronic hepatitis C, host factors play a major role in determining treatment outcome and the logistic regression model is useful for predicting the probability of sustained virological response in individual patients.
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