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Hep C infected for 10 years and am now Hep c negative (no treatment)
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Hep C infected for 10 years and am now Hep c negative (no treatment)

Hi i am a x herion user but i now stii use speed one to twice a week.iam 28 years old and have had Hep c for 10 years, my last test was taken 4 years ago and it came up as hep c posative. i have had a current test for hep c and i do not have it anymore, anti bodys have been detected but i havent had any treatmet for the viris. Is this normal alfter 10 years of haveing the viris?
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Avatar_m_tn
Wow beats me, but have heard of this.  I would retest and please get help to stop the speed, it will only creat new problem.  If you are clear you could catch the virus and this time may not be so lucky with clearing if you did the first time.

Good luck,

Bob
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Avatar_f_tn
I've never heard of something like this in my life.  If you do have it you realize how badly the speed is hurting your liver (well even if you don't?).

Did you ever have a biopsy to see what is going on?  

I'm an x h user too but now I realize all the damage that I did and the consequences I have to pay NOW for all my drug abuse. You name it I did it - all that I could. Now..I have hardly any liver left, been on tx and just destroyed my thyroid with the meds.

Was that worth it? Oh hell no.

If there is any way you can quit - please do. I know how much harder it is to do than to say though.

I would get restested because unless you just had the antibodies at the first test and never had a PCR or any other test done then - maybe you did have it but killed it - or maybe the second test is a mistake.  No way to know here.

Best of luck
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116701_tn?1210262764
Miracles happen everyday but just make sure you're clear I would be retested. I hope it is a miracle we all need those in our life. As far as the drugs you probably need a new circle of friends and remove yourself from the environment. I hope everything is truly okay and you are virus free. Dale
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Avatar_m_tn
Deb,

There are a small % of the population that does clear on their own and their concidered a walking miracle.  They look for people like that so they can study to find out why they clear and others don't.

Wish we were that lucky,

Bob
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Avatar_f_tn
I know that 20% is the luckiest 20% in the world.  

Well not that is not right we are...because we all found each other and at least if we are going to have something...we've been blessed with that :)

ANY NEWS?
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Avatar_f_tn
I feel the same exact way but as an addict I know sometimes it just isn't as easy to quit as you want it to be.

Hopefully this has shown this person that these things are POSSIBLE and PROBABLE in time.  Snorting is a real easy way to get HepC, needles are a real easy way to get HepC...just cause they don't have it now doesn't mean they sure wont in a few days at this rate.

It's sad and I hope that they stop and take care of their body.  In a few years it would be easy to imagine that they could easy be me.....a hepper with hardly any hair, LOOKING like I've done more meth than anybody should with a dead thyroid. Or...maybe much much worse - dead.

PS All the years of neglect AND doing H and speed and coke have left my teeth a pile of MUSH and my liver a joke. I wish to God I had been able to quit a long, long time ago. If I only understood then before it was too late.

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Avatar_f_tn
do you know the sensitivity of the tests used? IF they were all the same sensitivity of at least 50 IU/ML, and once were positive but read negative at present, I would say you have no viral load due to spontaneous viral erradication. But if it is only the antibody test done and nothing else,  it could have been a false positive. Were these tests PCRs? Most spontaneous recovery happen during the acute stage, but rarely some have recovered later in time.
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Avatar_f_tn
LOL! First, I must congratulate you for giving your tx the best shot you could give it with the data, or non data available for your geno. It is extremely frustrating not to find enough to relate to your situation. When I first tried to extend, there was nothing but an Israeli study of 8 geno 1, that extended and got SVR for a 90% rate. Very small study, but enough for me. There was one preliminary study that found no difference bt 48 and 72 wks for g1, and that was very discouraging to read. Another extension study was still ongoing and was getting results. I went with my gut when my wk 12 PCR was positive.
you would think that after 72 wks I would just throw everything out and forget about HCV, but fear, and only fear, kept me going and going...I remembered that monotherapy works on some people, and that Scott(rev) was able to keep a negative PCR for many wks on just interferon, I had about 2 more months of meds left, but knew that was probably too much to do. For mental health issues only, I stopped the riba with the last full dose of IFN and continued the next two wks at half peg. In spite of the continuing fear, I decided to let go at 45-47 wks from official clearing per 24 wk PCR(test was re done at wk 26), I might have cleared earlier, sometime after wk 12, which might mean I was neg for 55-57 wks, if I cleared at wk 16.
This is all because I truly did not want this tx again. I did not get mouth sores, general riba rash, Procrit worked to stabilized anemia, got pain killers, and still you feel like c**p! and exhausted. I did not want to do this again, period.
I have looked for studies on g3 and like you did not find much to use, much like when I was trying to extend, but You cleared early and were able to keep full dose meds? I can't remember if you did 800 or 1000mg, if the former is the dose, I would be worried. But you did a couple more wks.
The one link I gave Kalio on controlled interruption of tx was intriguing, but they only discontinued tx for two wks and restarted if PCR was positive, maybe you can get a 2 wk PCR?
But, then what studies out there support more tx after relapse getting good SVR rates? I can't temember what genotype the controlled interruption study dealt with.
If I find something within the next day, I will send a red flag.
I think you did your best, but fear is always with me when people finish their tx, until they post their 1st neg PCR.
the best to you and family
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Avatar_m_tn
Hey...I thought you made up your mind. LOL. But look who is talking.
-------------------------------------------

One very respected hepatologist suggested to me 48-weeks but "if I really wanted to be sure" an additional 12-weeks at half-dose peg and full-dose riba. However, when I called back a few months ago and asked for any studies or even anecdotals to back this approach up and questioned then why not then go for 60-weeks, he basically said the approach is very speculative and he thinks 48 weeks is the way to go. Further, I have been unable to find any studies supporting the logic of tapering off Peg at the end of treatment, which is different from mainteance where one has the virus. All said, tapering seemed like an intriguing concept but in the end I discounted it if for no other reason than there is no data. To play devil's advocate, what if a lower dose of Peg (without the riba) somehow un-mutates the virus? Just speculation. BTW my treating doctor wants me to stop everything the same day -- Pegasys, Procrit, Riba. That said, I will take riba for a week after my last shot, if for no other reason than to buy another 7-days of indecision. :) Good luck with whatever you decide.

-- Jim
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92903_tn?1309908311
Well mentally and physically, I certainly could go longer. I am not miserable. But where to draw the line? 48 seems excessive when conventional wisdom says I was probably good to go at 16 or maybe 24. I'd be putting the relatively small chance of having to repeat the past 26 in a future tx, against the certainty of another 22 in this tx. Sucky odds.  

Where to stop if I do continue? Stop at 32? 35? Who knows. What are the odds that 32 will be enough, but 26 was not? Any guesses?

Obviously I'm still trying to convince myself here :)

My riba dose was 1,200 for all but a couple weeks late, when I dropped to 1,000.  By standard weight based protocols, I fell right on the cusp, where technically 1,000 was correct for me. Compliance was 100%.

I didn't see the study you gave kalio, I'll go have a look for it. Thanks.
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92903_tn?1309908311
<i>what if a lower dose of Peg (without the riba) somehow un-mutates the virus?</i>

Ahhhh... you've been visiting in my mind I see.....LOL
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Avatar_m_tn
Goofy said: Ahhhh... you've been visiting in my mind I see
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I don't recollect telling any hemmoroid jokes lately but then again there's a lot I'm not recollecting these days :)

BTW it still sounds like you have in theory at least two days of agnozing decision making to do since I believe your last shot was Saturday and you're still on riba.

Some of the anecdotal stories in yesterday's thread would have made me (be me a 3a) of extending to 36 or 48 weeks. But then again, like you and your doctor said, no studies support the extension. But do any studies NOT support it? Tough call, glad I only have to make mine. Best -- most honest -- advice was given to me by a visiting hepatologist at my treating doctor's office. "We don't really know a whole lot about this" was what he said. I firmly believe that and with all your research, etc, at this point your decision is a good as anyone's.

The one thing that would push me to go 48 weeks is your stage 3.5 status, but then again, you're willing to re-treat right away -- so that kinda shoots holes in that logic.

Isn't this fun?

-- Jim
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Avatar_f_tn
goof, with that riba dose, I think you have a really good shot at SVR with what you did. RVR, and high riba dose, sounds good to me. But please get an early PCR, I don't think many of us can take the anxiety of waiting three months.
Jm; good luck on the final answer...re tx. When will you do the first post tx PCR?

oh! here is the study, it was geno one. There were a couple members here, who ended tx, were pos post tx, and months later became neg and remained negative. One of them is being followed up as a "rarity", the other just posted two yr neg PCR.
http://hcvadvocate.org/news/reports/AASLD_2004/Posters_AASLD_2004.htm#A39
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Avatar_m_tn
Cuteus said: When will you do the first post tx PCR?
------------------------------

Not sure if it matters in my case.

If I were planning on re-treating right away in case of relapse, then I'd ask for weekly PCR's to narrow the gap between treatments.

Realistically, both my doctor and myself believe my body will need at least six-months of recovery before any further treatment in the event of relapse.

Of course, the curiosity factor favors a 30-day PCR (or even less) -- but then again there's Willing's approach. I think he waited two years?

So, I'll probably do something inbetween. Right now, I see ending treatment and SVR as two separate things. Hopefully, one will follow the other, but even if not, I still consider my tx as a  victory to have been able to stay on the drugs this long giving myself what I consider to be a reasonably chance of success while hopefully still haven't done anything to my body that will not be reversible when I get off the drugs.

-- Jim
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Avatar_f_tn
If we can convince our dr and insurance companies, it looks like this type of testing will tell whether we truly are negative HCV:

"Of the 56 patients who provided specimens, serum and plasma obtained from 18 tested negative for HCV RNA at the end of treatment, indicating a complete virologic response. In contrast, analysis of whole-blood specimens obtained at the same time revealed the presence of viral RNA in 12 of these 18 patients. All 12 subjects had relapse of HCV in serum and plasma: 11 relapsed a median of 4 weeks after the end of treatment, and 1 relapsed 20 weeks after the end of treatment. None of these 12 patients
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Avatar_m_tn
May be wrong, but I believe the test in study cited was only 100% predictive of relapse, not of SVR. In other words, you could still test negative on the whole blood assay and still relapse. That said, it still would be a valuable tool. But all said, is it so much an insurance issue or the fact that this test is only available in research labs? If it's on Quest's form, my insurance usually pays.

Do you have a link to study?
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Avatar_f_tn
It surprised me that the norm was 48 wks also. funny how it all starts in Europe, just like the even shorter tx of 12 wks. They seem to always be looking to cut cost.

I was on 1000mg riba, a little over what my wt reccommended, but with so much forgotten pills, the pos PCR at wk 12 and the lowering of riba to 800mg for months, I felt SVR was in jeopardy.
The only study I found where 48 wks tx was beneficial in g3 was when they were on 800 riba, anything else it did not seem to matter. Still, someone makes up that 20 to 30% of relapsers and knowing the common factors in this group needs to be studied more. Why couldn't he had given you a script for a biopsy? I wonder if he does things different now, after your relapse.
It sounds like you are on your way to RVR with that riba, but try and get a sensitive TMA test for that 4wk PCR, don't mess around with the 50 IU one. I  can't believe how sneaky your strain is! Hiding so well from the PCRs only to run out and play as soon as the riba left.


goof: my GI's office do a 4 wk Post tx PCR as standard practice, then the 3 month, 6 etc.  I would go for a 3-4 wk PCR. Should be a real good indicator.
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Avatar_m_tn
Wow, you got that whack a mole game, thats a cool game. If you don't hit him in time he says "miss me". And if you do he goes "ouch that hurt" Dang though you got to me quick.
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Avatar_f_tn
LOL! I wanted the same thing, PCR of liver tissue to make sure there is nothing there.
here is the study above:
http://www.natap.org/2004/HCV/120304_04.htm

genotype 1b:
http://gut.bmjjournals.com/cgi/content/full/53/9/1345

no ocult virus in the liver:
http://www.natap.org/2004/HCV/112204_02.htm
http://www.natap.org/2003/Jan/010803_1.htm

long term follow up of at least 80 patients:
http://www.natap.org/1999/aug/longtermhist81799.html

I still want a liver PCR...maybe in the next biopsy.
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92903_tn?1309908311
Liver stage and employment issues dictate that I will watch closely for relapse, and retreat quickly if needed. So given I'm unwilling to take the Willing approach (sorry, couldn't help myself), when should I have my first VL? I believe I can weasle one out in advance of the 3 mos test. I'm thinking somewhere between 2 and 4 weeks. I would want to wait long enough to stand a reasonable chance of catching the relapse. Kalio, when did you draw your PCR?
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96938_tn?1189803458
To take an optimistic spin on Goof's question...Assuming SVR at what rate does the liver improve?.  Dr. Dietrich mentioned improvement, treatment may enhance histology. I've seen articles that say that it will, but have never seen data.   But does the liver improve at a rate similiar, quicker, slower?  If I was to relapse it would make a decision in next steps.
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Avatar_n_tn
My plan is to get a PCR drawn one month post tx then again 3 months post tx.  Can I offer a reasonable explanation as to why?  Not really.  Anecdotally, it seems to me that if a relapse is going to happen, it happens quickly.  2 weeks might not be quite enough, but a one month post tx neg pcr would go a long way to calming my nerves a bit until the 3 month test.  Of course,we all know it is ALWAYS a gamble and the darn critters can reappear anytime.  It is just my opinion that one month post makes sense :)
On another note, can you believe you are already talking about your post tx blood tests?!  Can't wait to hear your neg.  Also hope the sides disappear for you quickly!
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92903_tn?1309908311
Holy Carp, Kalio! That's a bunch of Riba. Do me a favor and watch it closely as you haven't hit saturation levels yet. My bounce from 1,200 - 1,000 - 1,200 tells me even one daily pill  makes a big diff. I think amommy's experience is similar.

Buckle up baby!
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Avatar_f_tn
As always...thinking up something none of us thought of.  What is the previous sensitivity was different hum? Like if this one was 615 and the previous was more sensitive because of different doctors or something like that? Then it could appear as if they don't have it now because it's under this 615 or something?

Or they might have been a lucky one of the 20%.

It is a mystery I wish we had more info - was a quantitative test ever run? Hum.
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92903_tn?1309908311
Do I remember correctly that you finished up your last two syringes by going into stealth overtime at half dose? What were your before and after thoughts on that?
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Avatar_m_tn
I think it really depends on what you will do with the results.

For  example, if you're not planning on re-treating right away, then a one-month or three-month or six-month test are fine -- depending on how much you want to know and how soon.

On the other hand, if your strategy is to jump right back into treatment at the quickest possible point after a relapse, then why play a guessing game. Here short-turnaround weekly qualitatives seem to make the most sense, finances/insurance permitting. Second best would be weekly enzyme testing -- if ALT starts rising, follow right away with a qualitative.

Regarding the "tissue" PCR discussed earlier -- my thought was it might be a good EOT indicator. But once I SVR, I have absolutely no desire to know if I have any "occult" virus remaining unitl someone convinces me that I can do something useful with that data.

-- Jim
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Avatar_m_tn
SVR may improve liver damage but it can take awhile. Improvement without SVR is also possible but I don't think you can bank on it, and even if it occurs not sure if any data on how durable the regression is.  As to "how much", "how soon", I don't think there's an answer -- other than liver biopsy or a less invasive test like Fibroscan. Should I relapse, I would have yearly Fibroscans and based on those results, possibly another needle biopsy. Schiff in Miami is one of 3-4 doctors in the country with Fibroscan.
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92903_tn?1309908311
We live and learn in this game, don't we. In hindsight, I'm thankful to have been started on high riba - but I wouldn't have known the difference before.

On the otherhand, I almost started on peg-intron, and went with Pegasys. I really wish I had that decision back (almost typed 'to make again'  - aack... we must be careful what we wish for)!
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86075_tn?1238118691
Group:  wow, you guys are really getting into specifics, hope you can sort some things out...

L Ann

I have two friends that have had this happen...one here, who used to be an addict in his youth...he had hep C for about 25 years or so, and he proceded to get really, really ill ...he said he was really ill for about 4 months...he said he felt like he was dying, there would be days where he said he couldn't lift his foot off the bed 7 inches...then one day he said he felt a little better, this kept on happening where he felt better and better till he felt okay again...once he went for his labs, the virus was gone with no treatment...and it's still gone and that was a few years ago...he had a type of remission all right...

Another friend from London had hep C and never experienced any symptoms at all...he had a relatively low viral load and his alt's were hovering around normal....he had hep for around 25 years also...one six month blood test came back negative, and has stayed negative for a few years so they say he no longer has it...

LAnn this spontaneous remission thing does happen to a very few people, but I would get everything checked in a very short time to  make sure..at least for someone using you are at least on top of it to get some medical testing, etc...once you find out for sure, I hope you can take this as a wake-up call, if not the following...

Anyone who is continually using as toxic a drug as speed is an addict and I'm pretty sure you know this on some level...this is THE most toxic drug a person could use and there is no such thing as casual users of this, it's not a "recreational" drug...you have to be pretty self destructive to chance using it...at any time using it....you could stop your heart....just because of the fact that you have used it before does not insure you of this never happening to you...the heart is an electric pump of sorts and these types of drugs that accerlerate the heart could AT ANY TIME interfere with the electrical pulses - many speed addicts drop dead of this - it happens all the time....

Say you are one of the lucky ones where this doesn't happen to you right away...as has been said...you could be rotting away your brain and vital organs at a very, very brisk pace...faster than any other drug...you plain just use up your body and you could age 10 years in one year...not just in your looks outside, which is bad enough, but inside too....the psychological damage is horrific...many times when you see those poor people yelling at bus benches...they are not always just delusional from one mental disease or the other....many are ex or current speed addicts whose brains are no longer able to function normally, and their brains will NEVER be able to come back in most cases, they go beyond the point of return...this can happen with speed in a relatively short time...one person takes a little longer, one person takes a lot less...

You probably already know you should stop and find help... your life is precious to you and your family and friends...it's precious enough to us to write you these postings...please seek help...
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Avatar_f_tn
in looking at the darn studies, it is rare to find a breakdown of relapsers by liver damage,but when found they can offer some direction.
in this study they found that advanced fibrosis is not likely to produce RVR and SVR, given that you did have RVR, it might be a real good indication of SVR.

"those with severe fibrosis are less likely to experience both RVR and SVR, and more frequently relapse off therapy.
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Avatar_m_tn
As an adjunct, a few months ago I asked my hepatologist why not test liver or other tissue for viremia as an EOT indicator. My reasoning was that if no virus can be found in the tissue, then nothing is 'hiding', etc, and therefore no relapse.

His response was that the so-called 'occult' virus in tissues is non-replicating and probably harmless and its presence does not mean the virus is or is not gone.

Not sure if that fully answered my question, but on quick reflection, do I really want to be SVR and at the same time know I have non-replicating virus in my body. Not sure I do until there is somethng they can do about it.

-- Jim
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86075_tn?1238118691


Goofy said: Ahhhh... you've been visiting in my mind I see
--------------------------------
Jim: I don't recollect telling any hemmoroid jokes lately but then again there's a lot I'm not recollecting these days :)

Dear Jim:

Thank you so much for pointing out Mr. Goof's obvious hemorrhoidal fixation...as a prominent member of the Poopy Threads, I, for one, always try to keep a modicum of decorum in the Poopy Threads...

How can any of us continue to keep the level of wit, elegance and sophistication we've all come to treasure in the Poopy Threads...if Mr. Goof invariably joins the party with his incessant hemorrhoid talk? Can any of us truly abide it any longer?? Bravo Jim! Well done my good man!
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92903_tn?1309908311
<i>It surprised me that the norm was 48 wks also. funny how it all starts in Europe, just like the even shorter tx of 12 wks. <b>They seem to always be looking to cut cost.</b></i>

But this was a study published by, and likely funded by, the drug company. If their pimary motivation is cutting patients costs, well.... good for them!

Another conspiracy theory that's been foated here is the drug cos want the gno 2/3 population to fail, so they'll come back and buy more drugs. Doctors, Insurance, and Pharms! Oh My!

More likely to me, is that they are interested in finding the best utilization of their product. The more efficiently it works, the more it will be prescribed.
<hr>
Switching gears, thanks for digging up the articles, Cuteus. The troubling rucurring theme that has popped up here and there over the months is that high VL (>800K) geno 3's are more problematic.
<hr>
I strongly wish they would start testing geno 3's for RVR before 4 weeks. The 4 week measurement doesn't seem to mean a whole lot. Maybe 1, 2, or 3 weeks would be more telling, but it wouldn't be very helpful on an individual patient basis - without some broader stats to compare to.

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