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

[shastri20032003]

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

[orleans]

Hey, Grim to say the least. Let's hope, that the tendency of folks that have a negitive experience with something are the ones most likely to respond to a survey such as this, holds true here. The number of problems and the %s affected by them on this survey are hard to believe. Seems like if the were accurate Drs would refuse to do it and the FDA would pull the treatment. jm

[jmjm530]

Survey seems consistent with what I've seen posted here. Most telling to me is that 40% reported feeling worse after treating than before: 29% reported feeling about the same; and 31% reported feeling better after treatment.

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.

There are reasons to treat, but 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. With newer treatments around the corner, this should be of interest to anyone with little or no liver damage. What these anecdotal studies say to me is to wait, not treat with current drugs.

-- Jim

[sfbaygirl]

Wow,  I haven't looked at this site yet,  but from what you guys are saying, or at least Jim, is that 2 out of 3 feel worse or no different after tx. That sure holds true for me. I know I felt worse after tx than during. Perhaps I am a "rare" case,  but from those who have relapsed  or SVRed, I haven't read many great stories of the aftermath. I just posted about this on the other side.  While I had a few sx before tx, I am not sure it was worth my while to now have an autoimmune disease and be taking blood thinners the rest of my life. I still have no energy after 6 mos. post and I relapsed. Doesn't sit well with me as I consider re-treating in the future, that is for sure.

[orleans]

Hey, I've been looking at this thing. If you compare the 1yr+ with the pretx groups you find a very modest improvement across the board. As you might remember I am stage 3 (bx jan.07) and am loathe to treat. Infected 37 years and I feel really very good. Do you think it stands to reason that those with few symptoms going in are more likely to come out better than those with many? It very well be that those with problems have more room for improvment. jerry

[jmjm530]

Jerry: Do you think it stands to reason that those with few symptoms going in are more likely to come out better than those with many?
-------------------------------------------------------------
Yes. If you're lucky you come out feeling the same. If not, you come out worse. Here is our own little 'survey' consisting of posts describing side effects, many post treatment. And yes, there was a modest improvement 1 year post, which is encouraging. Hopefully those of us who experience post treatment symptons from the interferon will start to feel better gradually. Still a huge chunk out of ones life.

Our 'survey':

http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/posts/show/286686
http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html

[jmjm530]

Sorry, my answer above should have been "No" for the reason given. If you start out feeling good, you pretty much have only one way to go which is to end up feeling worse. If you're lucky, maybe you'll end up the same.

[desrt]

The results are believable and seem to fit what I've observed. I do tend to be suspicious of surveys where everything comes out even and adds up to a neat 100% - someone always breaks their #2 pencil, has an answer that doesn't fit neatly into the format, or doesn't understand the question/fills out the questionaire incorrectly ;-)
The good news in my case is, that after several years, a lot of the post-tx sx have faded. Of course this wouldn't apply to someone who has permanently damaged their thyroid, but I think it does give more hope than the results of a, basically short term post-tx survey might imply. People are always disappointed when 'modern medicine' doesn't wave its magic wand and make it all better instantly. I'm willing to live with slight hypertension and a little insomnia (that I can't prove are tx-related anyway) and have a lower risk of HCC and cirrhosis in the coming years.

[shastri20032003]

The results of a survey would be much more reliable  if the total number of people being surveyed are in thousands and not in hundreds...essentially the range should be much larger and chosen randomly
In this survey the total number is only 500 people and I think this number is not big enough to come to any conclusion

[NYgirl]

well i have to be honest I definitely don't feel better or even as good as I did pre-tx but...I do understand that I put poison into my body for 72 weeks.  I didn't do it for "fun" I did it because it was necessary to try to save my life.

So I guess if I "saved my life" but feel worse - it's ok. I try to think of it that way.

[Valtod]

All these people surveyed have better than average: SVR rate, G1 ratio, length of Tx (40% did < 48 weeks). That means that for us here, especially the extenders, the odds for no long-term SX and better quality of life are even grimmer. Probably, 5 or 10 years from now, it'll be accepted truth that extending Tx guaranties irreversible damages.

Also, another myth dispelled here: the fading away SX. For example, skin problems - 39% first 6 months, 28% first 1 year, and STILL 28% after that. So basically, if you have it, it's yours forever.

I agree with Jim that you shouldn't treat just to "feel better". But now I start to think that you also shouldn't treat just to "regress liver damage", if you're going to feel much worse for the rest of your life. Especially when one of the possible long-term SX of Tx may be much faster progress of liver damage, instead of the expected regress.

On a Quality of Life scale of 0-10 (where 10 is living normal life without health problems and 0 is constant pain and anguish), my life pre-Tx was probably 7 and now is 2 on good days. Actually, the argument that being dead is a better option than living in a torture chamber starts to make a lot of sense in the nasty post-Tx landscape.

[jmjm530]

It personally disconcerting that so many people start their treatment journey here with a post that says something like "I've been feeling so bad/tired/(fill in the blank) lately that I knew it was time to treat.

What they are doing, of course, is making the connection between the symptons they feel and their Hep C. Whether there is a cause and effect (maybe, maybe not) is one thing, but the problem is that so many seem to think that treating will take care of these symptons. This study and other show that statistically the opposite may happen.

I'm certainly not against treatment -- I treated myself -- but I think it's important that people make the decision with realistic expectations.

-- Jim

[pigeonca]

Because of autoimmune skin disease, I treated for only 13 miserable weeks - but am probably going to be SVR (still UND at 4 months post tx), which I guess is great.  

So far I've suffered no further exacerbations of the skin problems, which were becoming permanent disfigurations while treating.  But I have to say I feel no better than I did before treating, still unable to make it through an 8 to 10 hour work day without a good hour's nap.  

I have one very interesting project coming up, fortunately for a producer who always uses me to edit her documentaries, that has no definite air date (it's for PBS, and they're pretty flexible), so I suspect that may be my swan song as a film editor.  Then I think I'm going to have to look into semi-retirement or a new career.  In another two years or so I'll be eligible for social security, which combined with some part-time gigs might support me - unfortunately NOT in the south of France or Tuscany as I'd always hoped.

I had always figured I'd never retire, simply reduce the number of weeks I worked.  To not be able to do so is quite depressing.  Maybe I'll feel better by this time next year.  Sure hope so, and hope all of you do too.  

Looking back, I still think I did the right thing in treating, since I was already feeling pretty low beforehand.  But if I were a person in my shape (geno 2, grade 2, stage 2) and feeling terrific, I'd wait for the new meds before undergoing treatment.

[mremeet]

I'm about 15 weeks post tx, and basically I feel great. I do have sore ankles and feet when I get up in the morning, probably an arthritic vestige of the IFN (that I did not have prior to treating). I've also put on a few pounds - I started tx at 180 lbs, dropped to about 165lbs at my lowest and now have jumped up to 200lbs (the heaviest I've ever been in my life (I'm 6'2" btw)). But I'm pretty sure the arthritic stiffness will go away in time, and I'm really to blame for the weight gain. I've been putting back a few too many microbrews and generally eating too much good food (and honestly not feeling guilty about it either!) since stopping treatment. No exercise to speak of either, so I can't really solely blame tx for that problem.

Otherwise I feel fantastic and look healthy. My eyesight is sharper, by hearing is better, my mental and emotional clarity is returning, my skin is cleared up and feeling good. My pre-tx fatigue and malaise seems to have up and left the building (something that's been my constant companion for 25 years). I feel cured, I feel like I've waken up from a long, dreary bad nightmare that's lasted for 25 years. I really do, and I'm starting to suspect it's because the HCV is gone and this may be a lasting situation, not some sort of near term post tx honeymoon period (where I eventually will return to my old self again). I could be wrong about that, only time will tell. But so far so good, and I know there are many others out there that feel good like me too. Pln (pam) is one of them, she told me she feels great and looks great since getting off the drugs and nailing her SVR. So did APK, he sings loud and bold praises about his SVR and how he feels. I think there's a lot more out there like us, you just do not and will not hear about them on internet forums like this. People who feel good get on with their lives and move on. Generally speaking they don't hang out on internet forums and post about how great they feel, and they don't take the time to fill out some completely unscientific internet survey either. They simply go on with their lives, no need to mope and complain and obsess and seek out help online anymore. And in saying that of course I'm not in any way attempting to diminish or dismiss the hardships or suffering that others have experienced post tx (which I absolutely believe are legitimate). But the facts are the facts and both sides should be given equal consideration.

And yes, of course the referenced survey above is completely unscientific as are the repeatedly and selectively cherry picked anecdotal medhelp posts referenced above. Those surveys also don't include a control group who've never had HCV and haven't treated using IFN+riba. Take a look at the age clustering - how do you think ordinary people (who never had HCV) would score on this survey? Especially considering how many HCV+ people either live or have extensively lived lives that aren't exactly "health oriented" (in contrast to the general/HCV negative populace). Think about it.

I started treatment because I have been sick for a long, long time, and I've felt sick for a long, long time. I wanted to be cured of the virus so I could arrest any further damage to my liver and also in the hope of feeling better too (when treatment was over, of course). I felt so strongly about this, I was willing to take the risk of treatment and being exposed to an experimental drug to achieve this goal (even in the face of minimal fibrosis). As it's turned out so far, by god I think I've made a good decision. I've apparently achieved a very substantial resolution of my hepatic symptoms (for now anyway) - even in the face of the microbrew guzzling, no exercise, food gobbling, fat arsed lifestyle I've been enjoying since treatment ended. Maybe I'll come to qualify or even retract that statement in the future. But so far, SO GOOD!

[FlGuy]

You may find yourself as the poster child for VX.  Don't worry, then can airbush a few excess pounds when they do the photo shoot.
I also felt great after tx#1. It's why the relaspe was a litte extra shcocking.  I have no reason not to expect the same after tx#2 - but with a different result, of course.

[jmjm530]

Mre: And yes, of course the referenced survey above is completely unscientific as are the repeatedly and selectively cherry picked anecdotal medhelp posts referenced above.
-----------------
You're either mischaracterizing the links I posted, or you haven't read them. These links are representative of all members posting at a given time frame PRO and CON, with some very heated arguments both ways. If you think these posts are "cherry picked" please show me some threads on post treatment symptons that you think are more representative and I'll gladly add it to the list the next time I post it. If I did wanted to "cherry pick" I would have done some editing. I think it's teriffic you're feeling better post treatment, but my take from reading posts here for two years is that you're in a minority. Again, I'll be happy to add any on topic thread to the list.

-- Jim

[mremeet]

Actually you're right I didn't read the posts you referenced above, but I did go through many of the ones you recently posted on a previous thread concerning this same subject matter (which included quite a few folks complaining after stopping treatment and relapsing (i.e. not achieving SVR, which obviously may be attributable to HCV again)). I'm assuming the posts you referenced on this thread are more or the less the same from the last one(s) (feel free to correct me if I'm wrong). Anyway, the ones I had read previously (that you posted/referenced as evidence most people felt like you felt after treatment; ie bad) primarily were weighted towards those who had problems after treating (again like yourself). This is natural and human and understandable, and I certainly don't think you did it deliberately to mislead anyone, you did it because you honestly believe it's true. But the point you may (or may not) be missing is that internet surveys or improptu/ad hoc online polls are simply sampling (a) those that are on the internet, and (b) those that are motivated enough to provide an opinion or fill out an online questionaire. They are not a true *random* sampling of all people within the general population with HCV who have or have not treated successfully. Online polls are also subject to wildly unrepresentative results as a consequence of a selective herd of people overrepresentative people coming from a particular ideological online group completing the poll en masse. These polls also usually do not include control groups nor do they incorporate a scientifically valid statistical analysis that accounts for how non-infected ordinary people within the same age/lifestyle/socioeconomic class etc feel within the same age bracket.

And speaking for opinions referenced in many of your medhelp links: Who are the most likely people to feel sufficiently motivated to fill out or type out an opinion on this subject? Especially if doing so may seem to step on the toes or otherwise appear dismissive/contradictive of those that are still suffering post tx? It's a bit like talking to a person who's in a wheelchair and can't walk. Listening to that person bemoan their pain and inability to walk and then telling that person you can walk and run just fine and feel great. If you're not in the wheelchair, you're just going to keep your fat trap shut for obvious reasons. And again, these polls/opinions exclude all others who are not on the internet. What is the breakdown of those with HCV/treating on the internet vs not on the internet?? I don't know, but I'd guess the amount of people who need HCV treatment or have gotten treatment and do not regularly visit or participate in online forums/polls far outweighs those that do (especially considering those within the so called third world)

Bottomline is that both the poll/survey and the posts that you referenced are unscientific as all get out. And you ask me to look up posts that are more positive and you'll include them in your list. You can consider my posts as more positive, apk's and plns and many others. But am I going to take the time to hunt them all down? Collate, arrange and display them here for you? No, I'm not. I'm feeling pretty good and don't feel motivated to do so. I've got bigger fish to fry (which again alludes to why you don't hear from people like this very often). And obviously you've been collating, saving and pasting these links yourself (which I call "cherry picked"). How much you wanna make a bet I can find several posts in the past where people who have completed treatment and attested they feel great - and yet you've somehow left their sentiments out of your list? And again, you're obviously not doing it deliberately, I know you don't want to mislead anyone. But whether you realize you're doing it or not, you are doing it (i.e. being somewhat selective in your referencing in a manner that generally bolsters and validates your personal sentiments/experience on this troubling and emotional matter).

But we appear to be interested in getting to the truth of the matter here. If we are, repeatedly insinuating or otherwise being somewhat overly suggestive that these anecdotal experiences or unscientific polls constitute good or reasonable evidence that the post tx SVR crowd generally is either worse off or no better off after stopping treatment, is simply inconclusive (and quite possibly wrong). That assertion may in fact turn out to be true, but the "evidence" presented and discussed in this thread and many that have preceded it far from demonstrate that assertion as being true.

[mremeet]

The only way I would allow myself to be used as a VX poster child is if they would also include a picture of me with my rash at its peak alongside it. They could caption it: "Better red than dead" ;-)

[jmjm530]

Yes, it's the same list, and again it's representative of BOTH positive and negative experiences. If the threads are more weighted toward the negative, it's only because that is how the discussion group responded at that point in time. BTW I will add this thread to the list, as like in many of the threads both points of view are spoken.

And, of course, no one has made any claims that these threads are anything but anecdotal, or that the poll someone else posted is 'scientific'. Still, I feel both poll and threads representative of the experiences I've read here over the years. No one has used the word "evidence". The threads are the threads and the poll is the poll and our opinions are our opinions. And until the medical community actually does scientific studies on this (not holding my breath) that is all we've got.

[Valtod]

Marie Antoinette apparently also felt great when she said "Let them eat cake".

I also felt great  when I had the chance to listen an informal discussion among several top hepatologists at a conference 3 years ago. They were talking about patients' quality of life and cost-benefit analysis of PegIntron/RBV treatment. Their spectrum of opinions ranged from skeptical to really negative. And my instant conclusion was that their pessimistic attitude was influenced by professional deformations.

It didn't even cross my mind that, based on their expertise and experience, they might  very well be right... I guess, because I felt great at the time.

Last year, when I called for a dermatologist appointment, I heard the standard medical emergency message: "If this is a medical emergency, please hang up and dial 911." And I was thinking, "What kind of medical emergency you may have when calling a dermatologist? A pimple on your nose? An eczema that can't wait until tomorrow morning?" I guess I felt great at the time and I never had a serious skin problem in my life.

Now, when I know what is to have such a bad flare up of rash that you can't open your swollen eyelids, I begin to appreciate the notion of skin condition emergency.

There's a well known psychological bias for unrealistic and even irrational favoring of positive outcomes. Additionally, cultural and social pressures push these attitude even further.

I'd suggest a very interesting book on the subject "Never Saw It Coming: Cultural Challenges to Envisioning the Worst" by Karen Cerulo.

-----------
People are much better at imagining best-case scenarios (I could win the lottery!) than worst-case scenarios (A hurricane could destroy my neighborhood!). This is true not just of their approach to imagining the future, but of their memories as well: people are better able to describe the best moments of their lives than they are the worst.

Karen Cerulo argues that in American society there is a 'positive symmetry,' a tendency to focus on and exaggerate the best, the winner, the most optimistic outcome and outlook. Thus, the conceptions of the worst are underdeveloped and elided. Naturally, as she masterfully outlines, there are dramatic consequences to this characterological inability to imagine and prepare for the worst.

[dointime]

"Marie Antoinette apparently also felt great when she said "Let them eat cake".

In Marie's case the reference infers that she didn't have a clue as to the mood or circumstances of the populace who were so enraged that they came after her head.

In mremeet's case he makes it very clear that he knows exactly how it goes down when somebody who feels great brags about it to people who feel like sh!te.  He knows it would be much easier just to keep quiet.  He could just quietly slope off with his SVR and not bother to make anybody the wiser.  Personally I'm very glad he took the time and had the guts to tell his side of things before going off to fry his bigger fish.  So thanks mre, I'll miss your take on things.  We were lucky to have you along for a while - and good fishing.

Valtod - Karen Cerulo - great book reference, thanks.

dointime.              

[dointime]

PS And also thanks to everybody who posted here about the risks, the downside and aftermath of tx.  People need to hear that too.  I certainly never appreciated how bad these drugs were till I treated myself.  I was a classic case of blind optimism and nobody could have disabused me of it, I was so gung ho to treat.  Well I found out, and won't be putting those drugs in my body again any time soon.

dointime.    

[dlr2007]

Well, this is definitely a heated subject- for good reason. Reading over this, I see very intelligent, well-educated people with strong- and different opinions. I respect you all-  I've read your advice and it's taken me from someone who knew NOTHING about Hep C, just that I have it, to someone who knows quite a lot. And I'm now able to face this disease with much less fear, because I know what I'm up against.
  I treated 12 years ago with 3xpr wk interferon. I had no sx, but never reached UND. I'm not gonna tx now cuz I'm a Stage 1- but I'm researching tx for my hubby. Due to platelets of 106, a FibroSpect II score of 67 and his general fatigue, I'm guessing he's further along in damage than I am. I hope I'm wrong. When he finally gets his bx, I will probably be his strongest influence on whether to tx or not. My main concerns are- like Valtex mentioned, if tx fails, that liver damage will progress more quickly after tx than before. I never heard of that before- will have to research that one further. Also, it is very scary to think of a person's quality of life being ruined, esp if they don't reach SVR, or relapse. I'm also very curious to know- if a person tx'ed previously with no major sx or longterm ill effects, are they likely to have the same results with their next tx? There is so much to think about- and since many people don't go online or participate in the surveys, we'll never really get the whole picture. I'm grateful to be able to come here and learn more about it though.
-Dee

[debnevada]

I assist a certain medical group's nurse with support groups. not all members are treaters or even contemplating treatment. I assist because of my experience as a therapist running groups.

i am told to minimize sides at these meetings.

[drofi]

I posted this in the other forum, but just noted the discussion happens here.
Btw, it seems it did not work well to separate the forums... just a thought.
drofi

Sorry to be honest, but this survey has one big mistake: It did not differentiate the answers between those who got SVR and the relapsers and nonresponders. In addition there was no differentiation between fibrosis or zirrhosis grading and feeling well.
There is a publication from 2006 about a similar, but much better German survey with more (714) patients : http://tinyurl.com/2c6ksq

Only 5.1% would not do tx again. Quality of life was better after Tx, but depending on the points mentioned above.

Another point to notice is the bias: People who feel well after therapy and have SVR, often do not want to continue thinking and talking about hep, they are just happy to be back to life. They disappear from the scene and do not give input to surveys. If you still have big problems, you are more interested in things. That is a bias in hep forums like this too!

And there are two other points to have in mind:
Many people who had hep C feel better now. Why? Because they are dead! Don’t forget that we don’t do Tx just for fun.
To tell somebody to wait for better stuff is easy, especially if you have done Tx and have SVR. But who is able to promiss, that the new stuff will enter the market without causing new longterm problems, and that something will enter the market at all? Don’t forget that all the presentations given from companies are not much more than marketing noise, Vertex is not the FDA!

Take care!
drofi