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Avatar universal

If negative 6 months after 48 weeks treatment , did anyone relapse?

I had 48 weeks combination TX as a genotype 1A with EVR, age 66, male.  Now I have negative TMA 3 months post TX, progressively feeling better (still with diminishing side effects) at 4th month (today). I live a "perfect" diet life style, no drinking...etc, lots of willpower, but my doctor says no alcohol for 5 years post TX!

Apprehension "lives" in me, as with all of us, moment by moment as we assess our physical state.  I am not allowing too much "hope" to exist, staying optimistic, because I want to be psychologically capable of handling the possible disaster of relapse.  

After 6 months post TX negative TMA test as a 1A, assuming no exposure, how many people relapse?  

Thanks for your help. The people in this site are wonderful.
29 Responses
Avatar universal
I was, along with 6 other people, infected by a small doctors office which put me into the "acute" classification as opposed to "chronic".  I immediately presented sx in a big way.  I began mono-tx 12 weeks after infection, then after the doctor that infected me ordered treatment stopped, of course I relapsed.  Changed doctors, paid my own bills, and went 48 weeks combo-tx.  I would not let anyone do a biopsy; fibroscan was the most I would allow.  So, liver damage is unknown, but likely minor. I had major sx, including liver pain, 2 weeks after exposure.  I had EVR with both tx.  1A and age are the two factors against me on the svr issue.  Thanks for your help.
151263 tn?1243377877
The odds are building in your favor that you're going to make it to an SVR. Don't remember offhand what the odds are after being clear three months post treatment, but I'm almost certain it's over 90%. I think it goes up to roughly 95% at 6 months and then approaches 100% after a year or more.

Also, since your doctor infected you and then mishandled your treatment while in the acute phase - of course you've secured a good lawyer, right? I'd sue the living $hit out of him for that one!! You have every right and justification to a BIG legal remedy.
151263 tn?1243377877
Geez, don't sell yourself short. If you have a reasonable body of evidence that he did infect you, and others were infected as well, then you damn well could successfully sue his a$$ off!! (in the US anyway) And you won't have to pay a red cent for a good lawyer, if you have a good case they'll be all over it pro-bono. I'd go after him with a vengeance for infecting me and then mismanaging my acute HCV treatment. And even if you personally don't have strong evidence he infected you, you can get together with the other infected people and compare notes. Between all of you enough evidence could be mounted for a class action suit.

Don't be cynical and dismiss your ability to be recompensed; if he really did infect you and you're in the US, go after him!
Avatar universal
Believe me,,,YOU have a good case if you can prove your doc caused this.
You should go speak to a lawyer. None of us know what health problems we may face in the future due to the virus and toxic meds.

This is a case that a lawyer will be more than happy to help you with. Believe me,don't worry about the jury not being able to "connect" with being sick.

A good lawyer will paint such a vivid picture,that the jury will feel pain in their liver,have riba rage towards the doctor and itch through the whole trial.

Wish you the best.
Avatar universal
We all know that when we are well we can't recall the torture of being sick, especially for a year and a half of flu-like symptoms accented with nagging fear, depression and brain fog.  A jury in America only shows up when they are "well".  They have no "connection" whatsoever of what we are experiencing, unless you have plenty of money for a notable attorney and expert witness' to express the realities suffered.  Even then, the defense, representing the medical world, has an unlimited pocketbook and the jury "thinks" the plaintiff is in a money grab.  These people literally took away the best years of my life and there will be little monetary justice.  In jury selection, you can bet none of them will have experienced Hepatitis C.
131817 tn?1209532911
Not sure what the statue of limitations are on this, but if they haven't passed, I would go after him too.
Avatar universal
Hi there.  I am geno type 1b. Did 48 weeks combo Pegitron, Riba. Last needle was August 2005. Last result in October 2006 was undetectable.  I feel confident that it will not come back. Good luck and keep positive.
131817 tn?1209532911
Sorry, we did digress a bit, huh? LOL I know what you mean as I have been involved in medical litigation myself. It is no fun. Sorry you have to go through this.

As to your question, I don't know for sure but have heard some here say that if you have 3 months NEG, then you have over a 90% chance at SVR at 6 months. At 6 mos. I believe the number rises to 98% chance of SVR. We have one person here that relapsed after 6 mos. but his next PCR within a week or so came back NEG, so the jury is out on his relapse. Hopefully it is NEG. Others here that have been around longer can tell you anecdotely about others that have relapsed after 6 mos.
131817 tn?1209532911
I worry too over every PCR, lab result etc. I am sure it will be even worse waiting those 6 mos. post. But you have made it 3 mos! You have an excellent chance of SVR. Good you found us now, it's never too late.
Avatar universal
Actually my husband relapsed at 1 year post treatment. My husband is 1B. There are some interesting theories regarding whether this was a relapse, or if he always had some lingering virion in his system that finally reared it's ugly head late in the game. His first tests were sensitive down to 10, but later tests were only sensitive down to 50, which is still pretty low, so we just don't know for sure. There is about a 2% chance of relapse after 6 months post treatment. It is unlikely to relapse that late, so the odds are in your favor for SVR.

Good luck to you,
Debbe
Avatar universal
Thank you all for your legal concerns.  Somehow my question evolved into the litigation issue.  

Regarding legal recovery: The others and I have an attorney.  We are attempting to recover in court, which will happen.  The MD admits s/he infected us.  That is no problem.  When you are feeling like hell, you have to go to depositions, which was horrible, you also have to tolerate it all with riba anger...etc.  No fun!  On top of it you have to pay for your meds, travel on congested freeways to pick them up, the usual!!  Later, several years, you will get some money, but you have to fight the insurance company -- who does not give a damn -- to get every penny. Then it is pittance compared to the torture.

MY MAIN CONCERN, is how many people in our wonderful, humanistic, compassionate group have relapsed after 6 months negative TMA that are 1A and do not have any possibility of additional exposure?  

Thanks all for your support and concern.  I think of you all often.
Avatar universal
Thank you all for your GREAT help.  My first question on this forum, no less, after being a member.  I joined post-tx, but NEEDED this forum DESPARATELY prior to that time!  

Sfbaygirl and Better_Angels even read AFTER much time passed!  You are so nice to do so!  I do feel content with ultimately getting an answer.  The best to all of you.
151263 tn?1243377877
You're right, I looked up pro bono and it's mostly defined as free legal services for the common good. What I meant was (as you accurately described) a lawyer that would charge no money up front, and would only retain a fee as a percentage of any successfully awarded financial compensation (usually a 1/3 of that awarded). If the lawyer failed to win the case, no fee would be incurred to the client. So thanks for the clarification, apologies for my poor usage of the English language. I'm still learning!

Oh, and I hope you're appreciating the fact that I'm taking on some of the ire of the 'ire-some' one? lol ;-)

And iresome one: You're noticed. You're important. People love you. You're a man to be reckoned with. People aren't taking you lightly. You're a person of consequence. What you say counts. Your thoughts are greatly regarded. You're definitely *not* a deeply embittered, lonely, logic addled, online sociopath desperately craving attention.

Nope, that's not you at all. NOT ONE BIT!

LOL
Avatar universal
Just wanted to say that a medical malpractice lawyer does not work "pro bono" but rather they take their compensation on the back end. However, if you lose you risk having to pay some costs and also risk having to pay costs of your opponent.
Pro Bono means for free. Although you do not have to pay at all upfront, in the end you pay. If you win it is deducted out of your verdict/settlement. The vast majority of cases do not see a courtroom. Usually your silence is another thing you "pay" with. You agree to keep your trap shut about it for X amount.


Avatar universal
I noticed your posts have been vanishing. What happened?
Avatar universal
I'm glad to hear you have conquered the rash. I feel even with the challenges you have had that you are still on track for SVR. I can't wait for the unblinding! I hope they honor their promises in a timely fashion.

It is disconcerting that the rash appears to be relatively widespread, I hope they can resolve it. It seems to me that duration contributes to it so maybe they can adjust accordingly and avoid the problem while retaining the most excellent probable benefits. Time will tell. You survived it and made it to SOC and that bodes well for your success in my view. It must have been  h e l l for all you guys who had to deal with it.

I do indeed notice, I've gotten some good chuckles out of it too.
I appreciate it as I do all your articulate and well presented input.


151263 tn?1243377877
Thanks for the encouraging and kind words. Yep, I'm anxiously waiting for my unblinding too, although I already know I wasn't in the placebo group. Mostly I want to see my PCR's, really hoping I didn't have a viral reappearance during my steroid junket. Otherwise I know the drug initially worked for me, it cleared the viral scum right out very quickly. And the worst case scenarios (VX rashwise) that I know about are myself and PDS. But even in our cases, we could (and still might) have derived an excellent benefit by simply stopping the VX right off at 50 days or so. I would imagine that would still significantly enhance SVR odds if one were to continue with SOC for a normal course after stopping the VX (although we don't have enough data to say that yet).

Anyway, lets all keep our fingers crossed that VX will pan out to be another powerful tool in the growing anti-HCV arsenal (albeit an imperfect one). Take care...
Avatar universal
I am glad for your comments on this site.  I too find the people here are wonderful.  I also think the "managers" whoever they are must be doing excellent work to create this group quality.  It is hard to hold the reins, almost a thankless job.  Good God, I chose "WillPower" as my logo on this forum because it took HUGE willpower for me to stay "sane" on interferon, Ribavirin, procrit, and the associated fear...etc.  I love this site.  Like you it is my primary site.  I have never seen so many caring people that devote their time to each other!
Avatar universal
I meant "well", not "will" at the end/ending.  Maybe it was a Freudian slip: it takes will to get well.
Avatar universal
As mentioned, I attacked my Hep C soon after infected with 1A.  Tests had huge numbers: RNA 3,100,000; AST 1,820; ALT 2,630 and off the charts on everything!  I never had a biopsy.  I started mono-therapyPegintorn120mcg/week and had EVR in 13 days for only 12 weeks, relapsed instantly after doctor, that infected me, stopped the tx!  Restarted 4 weeks later, mono-therapy, same dose, switched doctors when s/he did not want to give me Procrit, and new doctor immediately put me on combo-therapy, with Pegasys of 180mcg/week and Ribavirin 1200mg/day and procrit 40,000 per week. S/he said a minimum of 48 weeks was needed.

I believe, but I am no expert, that the liver can heal. IF ONE DOES A VERY CLEANSING DIET.  I believe in being gentle on the liver, including avoiding most supplements and herbs, and of course no drinking.  I switched to a macrobiotic diet -- not as a "religion, devoted brain-dead, closed minded" mentality -- but to avoid the fat and high glycemic sugars that other diets allow!  However, I do occasionally have a little sugar such as apple pie; but VERY LITTLE.  I believe sugar and fat are the two liver stressors.  I bought a rice cooker which is the best thing I ever did in this process. I know this is controversial, but I did enemas once a week.  Originally when I was feeling like suicide (figuratively only), I did enemas three or four times a week.  THEY MADE ME FEEL ALMOST LIKE A NEW MAN FOR A DAY!  Distilled water, of course and lots of reading on the technique.  It can be dangerous if you do not know what you are doing. I had a horrible tx hangover for two months post-tx.  I thought I had relapsed.  I strongly, personally, that is, am against too many supplements just to give the liver a rest.  I have a green power juice extractor and juice every day and take in 16 ounces of pure vegetable juice.  I stay away from fruit.  This is me, not for others.  They must talk to their doctor.  I talked to myself and did reading because doctors do not believe in diet as "major" even in a small way, means to health.  My cholesterol went down, for example, and doctors never tell people about diet.  Instead, they prescribe drugs to lower cholesterol!  I have learned to not let my "beliefs" own me and to be open minded.  I have learned that I can be my own worst enemy and con my self into any belief out of wishful thinking. Truly, from the bottom of my mind/heart, I believe -- if you have willpower -- you can heal yourself. The very best to you. Thanks for your contributions to this forum.  Oh yes, without "giving up" yourself, I think it is healthy to help others, if you are able, when you can; but get will first!
Avatar universal
This is why I think the body can heal itself if you have top notch diet, rest, mild exercise (movement only), lots of water (I used distilled), enema tx (with knowledge!) and lots of sleep using melatonin (9 hours minimum):

After the RNA 3,100,000, AST of 1820 and ALT of 2630 I started IV vitamin C to boost the immune system. IV was, of course large doses.  14 days later, I was AST 960, ALT 1872.  18 days later, I was AST 660, ALT 1470 and RNA 384,300!  I took the first Pegintron 21 days later, six days after that I was AST 170, ALT 510.  13 days after Pegintron I was negative RNA and AST 60, ALT 170.  One never knows what they will "really" do if they relapse, but I think, I would opt for the intense healthy eating/lifestyle approach and intense cleansing.  Check into the Gerson Institute on the cleansing issue.  Why would I go this route?  Because I learned how HUGE the withdrawal, symptomatically, is from the "drugs"!  This forum can attest to that.  BUT IF I HAD NEVER TRIED THE COMBINATION TREATMENT, I WOULD TRY THAT FIRST, along with the above lifestyle.  

Bottom line, I think that if you have the desire -- you cannot buy it -- the probability is very high that you can win this battle!  I would not start the path unless you are dedicated.  It MUST be continuous, IMO.  

If I can improve so dramatically WITHOUT the drugs, why not do the drugs with an immaculate life style and let the liver heal enough to win with the help of the drugs?  Just thoughts, not advice.

You are a good person, you deserve to win this battle.
Avatar universal
Thanks so much Jim.  I noticed you are 58, UND, slow EVR, and tx for 58 weeks.  I went 48.  At my age, 66 after feeling better and better and being UND after 3 months, I am optimistic.  However, I am curious, did you pamper your diet, sleep, living protocol, or did you continue with the usual American diet?  You are the only person I have heard of that was stage 3 that made it!  Congratulations! That is a major source of encouragement for people like reviere_____.  Also, if you see this post, do you happen to know of the "studies" you refer?  (Don't take much/any of your time to find, unless it is on the top of your head.)  Thanks for your response.  Very helpful.  Al
Avatar universal
Let me just try to summarize simply what my doctors told me in regard to my own concerns about relapse -- which basically are pretty much everyone's concerns.

Basically what he said is that of course it's important for both your liver and general health to lead a liver healthy lifestyle which includes watching your diet, weight, and not abusing your body with drugs, alcohol, etc. -- BUT that is not to say that anything mentioned will bring back the virus. In other words, once the virus is gone from your blood, it's gone, per the studies cited, regardless of what you do, other than reinfect yourself of course. They were pretty emphatic about that.

-- Jim
Avatar universal
If you're negative six months post treatment (SVR) studies suggest you have around a 98-99% chance of remaining non-detectible. After being non-detectible one year, that increases to close to a 100% chance of remaining non-detectible. Recent studies suggest the 3-month post-tx negative correlates very closely with the six month (SV) and in fact, one article I believed called it the "new SVR", or something like that. So, a slightly guarded, but pretty certain congratulations is in order !

That said, I believe we have one member -- RTS?-- who relapsed between the 3 month and six month post tx test, however  on re-test he was negative, therefore it may not have been a relapse and a third test should present a clearer picture.

All the best,

-- Jim
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