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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
Right on! I'm currently 6 weeks post triple therapy treatment and experiencing aches in my hands and wrists, sometimes terrible pain! However, I made the decision to have treatment knowing it would be grueling. I had to ask myself now, what was I thinking? My answer is, I still would do it. Idk, maybe I'll be lucky and this pain will subside eventually, but not if I stay focused on all the negativity I read on here. Mind-body connection. Can anyone please tell me something positive as a result of their decision to treat? Some of us need some hope and positivity.
Helpful - 0
190885 tn?1333025891
i feel so much better post tx then i did before i treated and i had awful symptoms on tx....it took a year post tx to get over....i think a lot of folks get too anxious post tx and start taking more drugs making things worse...i would think stay off meds for a year post tx if you can to let your body recover and rebuild...
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Avatar universal
I agree, anything I see on these forums scares me to death. Everyone is miserable. I am 2 months into treatment, yes it ***** but I went into treatment with such expectations. I went into treatment knowing that eventually hep c would kill me and am not comfortable going through life knowing my blood is contagious. I hope to have a successful treatment and should realy stay away from such forums.
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Avatar universal
I have just completed my third attempt and I am personally resolving to forego any new trewatment. I have experiencxed discomfort during each ntreatment and I am noticing post treatment issues and I still have hep-c. The medical profession, the poharmacuetical companies, and the FDA can find others who are willing to be expereimental subjects. I was trying to be altruistic hoping to get cured and to provide hope for others but I am no longer willing to try. Three times ios enough to accept that my hep-c is incurable. I will explore natural and herbal remedies but I will be extremely cautious about what I do wi9th this disease for the duration of my days on the planet.
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Avatar universal
I am currently on month 2 of treatment, but I found out I had it right away, so I am not being treated for extra symptoms, just getting rid of the virus. I would imagine if you were sick from liver damage, and you killed the virus off, that you would still suffer with your current organ damage, it just wouldn't get worse. I think the premise of the survey is flawed.
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217229 tn?1192762404
PEACE - LOVE - GREAT SEX...

Anyhow --- Check it folks... Youse guys are having too much fun pounding on the keyboard.

Hugs to you all.

Meki
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Avatar universal
Jim, there are 2 issues conflated here:
1. What are the ACTUAL rates of long term post-Tx complications and their severity?
2. What the people (in forums like this), considering Tx, ASSUME they are in their decision making process?

In order to answer these questions, it's not necessary to set up and conduct new research - retrospective analysis of already existing data would be sufficient.

Many Tx trials from the last 7 years had collected follow-up information about their subjects - not only PCR and histological data, but also lab test results, QOL and health issues questionnaires. Also, having access to the (anonymous) records of just several large practices treating HCV, would be a good enough statistical sample for retrospective analysis. If I had such a slice of 300-400 records of raw data, it would take me just 1 day to extract and report on the rates of post-Tx complications.

The second question can be also answered by analyzing the database of medhelp.org Hep forum postings from the last year. This would require more work because the data is not structured and all the postings have to be flagged based on some reasonable criteria. For example, each posting would have 1 of 5 possible flags: strongly optimistic, somewhat optimistic, neutral, somewhat pessimistic, strongly pessimistic. In order to automate to some degree the process, a keyword search algorithm can be created.

Assuming we have the quantified answers to our 2 questions, we can approach the most important issue: How the REAL outcomes correlate with the patients' PERCEPTIONS in their decision making process.
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Avatar universal
poop! I can't say what a bummer it is to hear about your relapse. What genotype are you and how long did you treat?
Keep the faith! Keep us posted.
Teri
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131817 tn?1209529311
Glad this topic is still in play.  I haven't been around for a couple of weeks, due to post-tx sides and trying to fix up my rental unit I have rented. Great to hear from you all btw.  Today I was supposed to go and wash some walls in my rental house....couldn't do it. A flare up of the Chronic fatigue or Fibromyalgia created too much pain for me to do so.  Some days are good and I have energy and no pain. I am post tx 8 months now, but have relapsed.  I worry about going back to my 70k job, as I can't seem to keep myself healthy for any sustained period. Obviously, the tx I had for a year caused many more problems for me, than if I had never treated. I would love to tx again, but won't until there is reseach to suggest it is advisable for me.  I haven't read many of this post.  Just wanted to put my 2 cents in and  say I am glad that this topic is still here.  Hi and love to you all!!

Linda
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Avatar universal
Mre, I find it bizarre that, after the initial exchange and my attempt to shift the discourse to more general and hopefully common ground, you still insist on sharing your “honest” opinion (about which I obviously don’t give a sh*t) how “temporarily insane” I am, or even worse - “very irrational person”.

You blame me 3 times for my “multi-post extravaganza of ad homs”, while your own endless ramblings are nothing more than a lame exercise of ad hominem circumstantial.

You also insist that I’ve “tried to kludge together some kind of mish-mashed scientific theory” and I’m “way off base with this hackneyed positive outcome thing of yours”, so I better “give it up”.

Hello! In which century are you living? This is not my “fanciful theory” but well established, DEMONSTRATED SYSTEMATIC positive outcome bias (in the cluster of positive illusions), which is mentioned in most of the books dealing with cognitive biases in the last 20 years (and probably thousands of research papers).

I gave some quotes and sources, which can give a start to anyone interested in the subject.

However, where are your sources and data for falsifying this “fanciful theory” of mine? How come in your confused “multi-post extravaganza”, you never bother to provide a pointer to anything reliable outside of your own skull? Please do that! Or follow your own advice to “give it up”.

And by the way, about “my fanciful theory regarding how and why human beings ALWAYS favor a positive outcome”, where exactly did I say “always”?

And how about this “brilliant” 3rd-grade level ad hoc explanation of how the things “really” work in the real “circle of life”:
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If human beings were predisposed to this favoring a positive outcome when sizing up challenging and potentially life threatening scenarios, I don’t think that would bode too well for one’s natural selectability. “Look Zog, that lion is so cute and cuddly! I’m sure he won’t mind if we borrow a leg off his zebra!” or “Wow jim-bob, I’m realll hungry, those mushrooms there look delicious. I’m sure they’re ok to eat, lets have some!” There’s a strong argument to be made that human beings, like most animals, have an innate wariness and suspicious nature when it comes to sizing up something that may not be perfectly understood (when in a natural setting).
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Seriously?! You just came up with this and decided to share it with the world?

My only option is to take it as a joke. Otherwise, I’ll have to suspect delusional insanity (at least temporal :-)

And now this “serious” argument:
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My post tx experience is what it is, and I’m telling you what it is. I’m not forecasting what it will be with starry eyed optimism because I just want to believe everything will work out. I’m telling you real-time what it is.
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Is that really what you’ve concluded about the Positive outcome bias? That my issue is that you’re FORECASTING your own positive future experience? Since I can’t believe such a naive reading, I’ll assume it’s just another cheap rhetoric trick.

But let me try it one more time:
The issue is NOT that you’re forecasting or lying about your positive outcome. The issue is that you claim that your (real) report is underrepresented, implying that there are many more like you. Hence, the probability for positive outcome for those who are about to make a very difficult and important decision in their lives - to Tx or not, exactly how and for how long - may be (much) higher than previously thought. And this is a very irresponsible suggestion, I happen to think! Because pushed by their OWN positive outcome bias and encouraged by YOUR mythology of the “underrepresented” lottery winners, some of them may make ill-advised decisions with disastrous results.

Since you’re already on the other bank of the river in a cozy cocoon of post-purchase rationalizations, it’s easy for you to influence those, who haven’t wet their feet yet, how much greener is the pasture on the other side.
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Avatar universal
I've tried to make the same point several times but never so eloquent. The other point is that self justification and rationalization seem to be part of human nature. In terms of treatment, that means that means that some may minimize the negatives and maximize the positives, at least on a subconscious level.

All said, until actual studies are done regarding post treatment side effects, we will never know if post treatment (and treatment) problems are over-represented or under-represented here or in surveys like the one posted.  Same with pre-treatment extra-hepatatic symptons as well. On the flip side, we'll never have a lack of opinions, or threads like this. And I think that's OK. Even good. Cause we're not going to get this discourse in our doctor's office.

All the best,

-- Jim
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Avatar universal
From my personal experience on this forum: when I feel the worst, I don't have the energy or even the interest to follow what's going on here. And in the periods when my SX subdued during Tx, or when I felt cautiously optimistic that my health would get better, I was more motivated to participate. In fact, if I trace back my own postings in the last 2 years, I'll be able to mark the weeks when the SX were more tolerable.

I also notice similar patterns in the level of forum activity of other members, whose Tx stories I was following. People tend to be more active when they feel better, or optimistic about their course of action. On the other hand, they tend to withdraw when major health or existential crisis strikes them.

For example, NYGirl who used to be the ultimate optimist and driving force for a long time on this forum, now after personal tragedy and other personal seatbacks (see her “whining” party) is less frequent and enthusiastic participant.

PonyShelly, battling severe post-Tx SX, now only makes rare forum appearances, which is quite understandable (I think).

SFBayGirl (she and I started Tx at the same time) was very active and optimistic during her Tx until a major health crisis put her in hospital. Then she was MIA from the forum for more than 6 months, which is quite understandable (I think).

Other people, when hit with really bad news or intolerable SX and symptoms, succumb to depression or start looking for solutions elsewhere and simply disappear.

Also, there’s a category of people with very serious post-Tx problems, who come and post in the forum several times, then evaporate because the forum cannot provide useful advice or help that they need so desperately. There seems to be an inverse correlation between the severity of one’s health problems and the utility of the forum.

So, if we look at the distribution bell curve of forum participants, it seems the majority in the center are cautious optimists with relatively mild problems. The pronounced optimists and SVRers with minimal or no health problems form the right tail, while relapsers, people with very serious pre-, during and post-Tx SX and depressed pessimists form the left tail.

The selective forces (HCV - very serious disease, SOC Tx - difficult, long, not very effective and with bad SX, continuing post-Tx), forming the forum population, would be expected to draw a much thicker left tail.

Now we can see how the population is constantly shedding from both tails. Knowing the described dynamics, it seems plausible that more participants will drop out from the thicker and longer left tail, then from the thinner and shorter right tail. Observed for several years, this system would lose more pessimists with severe health problems, hence leaving them underrepresented in the total population, ever registered in the system for the given period of time.

Similar consideration could be generalized for other online HCV communities and distribution of opinion spectrum.
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Avatar universal
jimquote: "I just don't think it makes sense for Katerika to extend to 72 weeks (with or without Alinia) if detectible at week 24."

Well, even if she were detectable at 24 weeks, the possibility of trying Alinia is still a viable and good option in my opinion. Considering she seems to be moving towards cirrhosis rapidly (according to her biopsy results), time is of the essence. And assuming she already has a very low VL at this point (which I assume she does), if Alinia is truly a potent HCV antiviral (again which prelim results suggest it is), then she'll know if it's likely to work within 4 weeks after taking it. If I were in her shoes and were still detectable (either at week 20 OR 24), I'd look into Alinia. If it looked pretty good (based on the the earliest reports), I'd try it and be tested with a 2 IU/ml PCR at week 1, 2, 3 and 4 (starting from week 20 or 24 etc) after starting Alinia (while continuing on IFN and riba). If all of sudden the virus went UND, especially at week 1 or 2, I'd take that as a real good sign and keeeeeeep going. Keep going and keep getting those PCR's along the way (to ensure an UND status is maintained). Going out to 72 weeks from there would tack on a full 48 weeks more of UNDetectability, which should forbode a likely SVR. If I didn't achieve an UND status within 4-8 weeks after starting Alinia, then I'd consider quitting altogether. That is, unless I opted to provide my liver with therapeutic maintenance dosing for a while longer (not a bad option while I thought about how to get into a protease inhibitor trial etc later).

Anyway, that's my $0.02. I think Alinia is worth a good solid college try under these circumstances, be it week 20 or 24, even if not UND by week 24.
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Avatar universal
Let me re-prhase that because it's getting confusing.

I just don't think it makes sense for Katerika to extend to 72 weeks (with or without Alinia) if detectible at week 24.

However, if she does make the decision to extend, then adding Alinia is reasonable. Hopefully, she will get in contact with a good cutting-edge hepatologist beforehand, who will help with the decision.

-- Jim
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Avatar universal
Mre: If I was in week 20 and still not UND, and was strongly considering going 72 weeks, even if I didn't achieve UND status...
----------------------------------------------------
Can't disagree there. But I'm not sure that Katerika is considering treatment beyond week 24 if still detectible.

But if you're saying -- and I'm not 100% sure you are -- that if Katerika is still detectible at week 24, then she should add Alinia to the current mix and then extend treatment to 72 weeks, then we disagree on this on.

-- Jim
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Avatar universal
No, I didn't mean try Alinia only if you're UND by week 24. If I was in week 20 and still not UND, and was strongly considering going 72 weeks, even if I didn't achieve UND status...then damned right I'd look into alinia, and I'd look into taking it right away. Especially if I were teetering on the cusp of cirrhosis, and possibly largely squandering 72 weeks of hell with virtually no hope of scoring an SVR. I'd try my very best to get the skinny on Alinia, and as long as things looked at least reasonably promising (with no other information), I'd take it and take it with gusto (under my doctor's close supervision, of course). Sometimes in life you have to act and act boldly with very limited information. Obviously it's Teri's call, but depending on how she personally sees things, this just might be one of those situations.
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Avatar universal
Thanks I am on the upped dose of Interferon 150, and as I said I have a few more weeks till next blood work I am real antsy, trying to keep hopful for week 24 and UND. I am also pushing for the meds for Insulin resistance.  I figure if I can't beat the Hep right now I will focus on the fatty liver. Plus whine.whine whine.... I stumbled a few weeks ago and am scheduled for an MRI, Torn miniscus?  2 weeks ago abcessed tooth, my face blew up so bad the ER did a CAT scan. There is more, It's alway's something!
I really value your input.
Teri
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Avatar universal
Don't want to talk for anyone else, but I'm assuming "Mre" means try Alinia if your UND by week 24. I  don't know if that will benefit you but I see no harm. But whatever he means, I would not extend beyond week 24 if still detectible at week 24 with or without Alinia.

Alinia may have some future promise but as far as I know there currently is no SVR data on the drug and certainly not in situations like yours.



-- Jim
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Avatar universal
Look into Alinia, it's a drug already on the market that's used for parasites (of all things). Prelim results show it is a powerful HCV antiviral (for geno 4 for now, but should work for other genotypes too), with very minimal side effects. Too early to say if it's really all that, but if I were in your shoes right now I'd be looking into harrassing my doctor into prescribing it to you (like yesterday)...especially if you plan on going 72 weeks. It may turn out to be a salvation that's already sitting on the pharmacist's shelf. Good luck!
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Avatar universal
The 72 week protocol is for people who are detectible at week 12 but non detectible by week 24.

If you're detectible at week 24, you almost have no chance of SVR, so doctors in the know will tell you to stop treatment.

That doesn't mean you won't get SVR -- just that you won't get to it with 72 weeks of your current treatment regimen.

I'll keep my fingers crossed that your're UND by week 24, but if not, please see another doctor (def a hepatologist) before continuing any further.

All the best,

-- Jim
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Avatar universal
Wow, that was too much trading for one sitting. A lot of info.
It all boils down to read, be informed, go with your gut. Treatment is a personal decision.
I made a stupid, uninformed choice 37 years and after having quite a wonderful life and looking forward to more I was hit with this dx in 2002. Stage2 grade 3. I was told SVR was a 30% chance and since I had the disease for 30 years + it seemed like a good idea to watch how it progressed. Well March 07 Biopsy said stage 3 grade 3/4, I decided to treat. I am at week 20 and still not UND. I am hopeful, though some day's I feel " I am in deep doodoo!  Tx. hasn't been easy, and "if " I am finally UND, I plan to push for the 70+ weeks. If I am not, I will enjoy being off tx.for awhile and regroup. Life sometimes throws us a curve ball. I am addicted to my own personal hope, to be without it  would be very depressing!
Teri
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Avatar universal
Valtod: 1. Incompetent individuals tend to overestimate their own level of skill.
--------------------------------------
I've been to the very best doctors and to some very so-so doctors. What I've found (dermatologists excluded) is that the very top dogs are the ones that admit they don't know a lot of the answers. They are also the ones that invite patient input, listen to the patient, and actually let the patient make treatment choices. The so-so ones tend to be autocratic and it's either 'my way or the highway'. Dermatologists tend to fall into the latter camp, even the very good ones.

-- Jim
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Avatar universal
Mre: Alright already, lets put a fork in it!! IT'S DUN!!
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Who was the first that said, "it ain't done until I said it's done"...anyway...

We seem to agree on the word "Whiners". Actually, the word amuses me now, but while on treatment (that riba does make things worse) it bothered me alot, and I assume also bothers others a lot, for all the adjectives you used and more. I used the word here in a satirical sense, but unfortunately, some here still use it in that same mean spirited way, and ironically, some of them are treating. All I can say to them is that until you walk in the shoes I walked in during treatment, then shut the f*ck up. Nuff said on that.

Where was I...well, let me skip to the end since this is getting old and I got a good movie on freeze frame. No, I didn't jump to the net when I found out I had Hep C, cause it was 1969 and not net. It was called chronic persistent hepatitis then and without the net, you really just talked to your doctors about it. I was lucky that I had the very best then although it turned out they didn't know all that much back then. But when I did find out I had Hep C, around when it was discovered, I did check out the net for a few weeks and found very little worthwhile at that point. I still relied on my doctors who told me that treatments were "barbaric", failed most of the time, and to wait. That was probably in the monotherapy days.

Like I said, the next time I popped back into the net was when I started treating. On day one, I didn't know a PCR from a PCP. By day seven I had scoured the net and medical libraries and read all of Lindahl's work.  On day 8 I changed doctors and asked for high dose riba and double-dosing. Yes, I ended up in the ER at week 2, but it wasn't for lack of trying. I tend to procrastinate, but once I get going I get going. I should also note that at the time I was incorrectly told I was between stage 3 and stage 4. Now I'm DUN.

-- Jim





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Avatar universal
"All Nature is but Art unknown to thee:
All chance direction,which thou canst not see:
All dischord,harmony not understood:
All partial evil,universal good:
And spite of Pride,in erring Reason's spite,
One truth is clear,Whatever is,is right."  Alexander Pope
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