How long to keep doing treatment after nondetectable

I am doing treatment for HCV genotype 2 and my levels were low 180,000. My Dr. said easy to cure 3 to 6 months and gave me a scrip for Peg/Riv for 12 weeks and after my 4th treatment test was the HCV is undetectable. Great I was sure I would be done 12 weeks. Well then Dr. visit just busted my bubble he wants me to finish the 12 weeks and do 12 more. What is up with that? I have very bad side affects can't work and it is messing with my mind short term and simple things. I have been trying to pass State Real Estate test...What a joke with that math and this is simple stuff to me (well it was) my question how long should you keep doing treatment once undectable. My Dr. never told me about the side affects that may never go away and the other damage this posion is doing to my body. I think the shorter treatment should be better for patients. Can any one help I don't want to risk it coming back but what is the since of being cured if the quality of life is sucked out of you forever. Thanks San

[1oftheclub222]

I am also type 2, I had not heard that treatment could be as short as 12 weeks.  As far as i know, 24 weeks is the standard treatment time for type 2.  That is what the data says.    Google it, there are lots of websites that talk about treatment durations.  I thnk for the most part most people don't have ever lasting side effects, not saying it doesn't happen, but I don't think it is the norm.  There was a thread on here yesterday about how long it takes to feel ok after treatment, most people said anywhere from 3 months to 1 yr to feel 'normal' again.  Talk with your doctor about your side effects, they may be able to give you something to help them...and drink LOTS of water!  I hope you feel better soon and reach SVR, cause really that is the goal, right?

[willbb]

The standard treatment for G 2 is 24 weeks...
There is some conflicting data (below)  from studies  on length of time to treat,however it sounds like your doctor is recommending the 24 weeks to maimize your chance of success

Good luck..
Will

http://onlinelibrary.wiley.com/doi/10.1111/j.1478-3231.2011.02710.x/full

The combination of PEG-IFN and RBV has been shown to be very successful in patients with genotype 2. The AASLD guidelines [5] advise treating HCV-2 and -3 patients for 24 weeks with combination treatment, including PEG-IFN alpha-2a or alpha-2b and a fixed dose of 800 mg of RBV [6]. With this treatment, more than 80% achieve SVR. However, because experimental and clinical data suggest possible differences between HCV-2 and -3 [7, 8, 9], it may be worthwhile to focus on response rates by genotype for the future scenario of the treatment of hepatitis C.

One trial by Zeuzem and the large ‘real-world’ WIN-R study reported a 9% difference between HCV-2 and -3 genotypes in SVR rates in favour of HCV-2 after 24 weeks of treatment [10, 11]. Recently, REDD 2/3 another ‘real-world’ study analysed HCV-2 and -3 separately in an evaluation of both a lower dose of PEG-IFN alpha-2b and a reduced duration of treatment [12]. This study reported somewhat higher rates of relapse in patients with HCV-3 than in those with HCV-2 after 24 weeks of PEG-IFN alpha-2b and weight-based RBV [12].

To reduce the costs and spare the side effects of combination treatment, several studies have investigated the effectiveness of treatment for less than 24 weeks after an RVR. Several studies in Europe and one study from Taiwan [13] have shown that a course of treatment with PEG-IFN and weight-based RBV for 12–16 weeks was not less effective or was cost-effective compared to the standard of 24 weeks [13, 14, 15, 16, 17]. However, one larger multicenter study, using a fixed dosage of RBV did not demonstrate that the two treatments were not less effective [18]. Based on the analysis of results in the literature, the updated European guidelines conclude that HCV-2 and -3 can be treated for 12–16 weeks when HCV RNA is undetectable after 4 weeks of treatment, as long as there is no advanced liver disease or obesity and RBV is weight-based [19]. The guidelines suggest that a short course of treatment may be slightly less effective in patients with HCV-3.

[nygirl7]

Whoever said the quality of life will be sucked out of you forever obviously never died of end stage liver disease nor did treatment and moved on with life as a person with SVR who started out with a high level of liver damage and was facing eventual ESLD or perhaps liver cancer.

I treated for 72 weeks starting in 2005 and watched several people I've known die of hcv since then. To me, it seems silly to act like you are going to be permanently destroyed when this treatment in fact could be saving your life.

Try to look at the positives and sorry I dont think anyone can make an educated guess as to why your doctor wants this or that because we dont know your medical history or liver disease deterioration or many things.

[sandra1021]

Thanks for the comment. I have googled and reserched the crap out of this and the Europe studies say 12 to 16 weeks as long as RVR was reached by 4th week and not having any other compulications like liver damage. My levels were almost normal. My Dr. does not care and is just doing his job and sell the meds and he and just following guide lines set by the FDA. For the left over damage dig a little deeper and read this at lloydwright.org

[nygirl7]

For the left over damage dig a little deeper and read this at lloydwright.org ."

Oh Lord jesus there we go now we get the point and if you are not trying to make a point all any of us can say is 'FAKE, FRAUD, CHARLTON, SNAKE OIL SALESMAN'.

Your doctor does care - this $$$making evil man does not and that is that.

If you can't take the suggestion to the do the mandated 24 weeks then just don't but dont blame anyone when the virus comes back again.

[sandra1021]

Thank you and I read the whole study paper a couple of days ago. I had  no advanced liver disease or obesity nothing but good health just tired sometimes and RBV is weight-based my count wasn't but 160,000. My HCV was found by accident because of IBS. I just don't want to inject posion into my body if I don't have to. If it was still showing up I would go as long as I had to.

[sandra1021]

Well your comment just goes to show there is long term affect after treatment. You sound like the standard Dr. and your mind closed. If the treatment time for some people was less and recoup time was shorter...How many people do you think that would make happy. People in Europe and other counties make this happen and think outside STANDARD!  Don't comment to me again I have seen people die with HVC and talked to people who wish they would have never done the treatment because they are worst off now. I just asked a question to see if anyone else did the nonstandard treatment.

[1oftheclub222]

American Doctors don't go by European guide lines when it comes Rx, they go by FDA guide lines, because that's the rules for America.  You can always just stop at 12 weeks I suppose if you are that passionate about it, sounds like you may have your mind made up already, just looking for confirmation on that discision...for me, I rather do the whole treatment, cause that's what is  has been proven to work the best in American trials.

i don't know that it has been proven that 12 weeks of interferon is any less harmful to you then 24 weeks, but I do know that it has been proven that 24 weeks of treatment gives you like a 75-85% cahnce of beating this thing.  Good luck on what ever you decide...if you do only go 12 weeks, let us know what happens at the 6 month mark, will be interesting to see...

[nygirl7]

Well your comment just goes to show there is long term affect after treatment. You sound like the standard Dr. and your mind closed"

Honey bunny I treated this disease with one of the worlds top heptologists as a consult back in 2005 and have been cured since.  I think it's a compliment to be compared to one of them thank you very much!

If you choose to not follow protocol and the disease comes back because you followed the advice of a quack who sells books rather than a 'real' doctor (and one who has never proven to cure ANYONE of this disease at that) then well it's up to you.

But I dont think anyone here would advise you to disrespect your doctors correct and FDA based actions nor jump on the bandwagon of a fruitcake just because it's what you 'want' to hear.  The way way out is seldom easy out at all.

But it's up to you, good luck with that.

[orphanedhawk]

This medication is a difficult one just as hep C is. It varies from one person to the other, both in side effects, long or short term. Many people have no long term side effects. They go happily on with their lives and don't post about it online. I have a friend like this, its part of her past.

Like you I am geno 2 doing 24 weeks of tx and have been und. since week 4.
My hepatologist explained that just because you are und in your blood doesn't mean there aren't still active virus in your liver. If you stop tx early they will reproduce rapidly.

However, there was one woman here who was geno 2, had minimal liver damage, stopped at 16 weeks and cleared.
Another member, I think he was geno 3, stopped due to sides at 7 weeks, and cleared.
However, there are also many, genotype 2 and 3, who did the full 24 weeks or longer and relapsed.

Its a gamble. Nobody can say for certain what will happen if you stop now. Statistically, you have a better chance for it to work if you do the full 24 weeks.
Its your life, your body, your choice.

[sandra1021]

I am not flowing the advice of a quack I don't know about his books I am going by proven studies outside USA. Your standard 24 weeks is from studies in USA and most of those people have high levels and other problems. I am not saying I would not do long treatment if not undectable but I am RVR and I know 3 people that quit treatment 4 weeks after being undectable and now all 3 are SVR. Like I said I am looking for others that finished sooner and there results. I am going to see another Dr. next week and get his take on this. If you were RVR after your 4 treatment would you have kept going 68 weeks? Think about it not everyone is the same. God bless you for your cure but don't knock someone who does not want to inject poision into her body if I don't need it. Worst case if it comes back I start over but my own Dr. said he never seen levels go undectable so fast. So when I ask why do I have to do 12 more after I finish the 12 weeks I am doing now and he said it was STANDARD guide lines. Again I want to speek with people who had to stop or quit early and there out come. Thank you and I wish you well.

[sandra1021]

Thank you and your comment was great no 2 people are the same. I am searching because I am scared and might have to stop treatment anyway because of side affects. I can't work and my short term memory *****. I was just fishing other people stories that stopped early. My Dr only gave me a scrip for 12 weeks.

[orphanedhawk]

One more thought. My hepatologist is quite willing to do whatever to keep me on treatment. He'll write scripts to help with side effects or lower dosages.
In fact last week my dose was lowered. I can't say I feel great but I do feel a bit more like myself.

There was some research a few years back for geno 2 and 3 doing tx for 16 weeks.
If you were und by week 2, it may be worth thinking about at least doing 4 more weeks.

Good luck.

[sandra1021]

Thanks and I wish I had a Dr. to help the only think I get is ibprofin. I am going to see someone else next week I am so tired of him saying well its the side affects take 2 asprin and rest. I did think about more weeks if we can afford it I am on # 9 and will try do 16 or more weeks I ask about lowering my dose and he said they did not do that. I wonder if I made a bad choice of Dr. Thanks I like your comment and good luck to you.

[stormy456]

My husband's VL was lower than yours - 24,000, and he was UND at day 4.  Vertex is doing a study right now for 12 weeks total treatment, but data is not available yet.  Our doctors discussed only doing 12 weeks, but after a great deal of research (they met with lead Vertex researcher to discuss) have decided that he needs to complete 24 weeks.  While we were disappointed, we would rather clear this virus once and for all rather than run the risk of relapse.  Just one more perspective

[1oftheclub222]

Ahhhh, you know my insurance only approved my meds for 12 weeks, but that is because treatment is response driven, I can't remember exactly, but I think if you are not und by 12 weeks, or at least have a 2 log drop,  then they stop treatment, cause it's not working, or something like that.  Maybe that's what the 12 week RX was about and you just misunderstood and thought that was for the whole treatment?  Maybe there was a miscommunication between you and your doctor?  How does your blood work look?
I agree, if my Dr didn't listen to me and disregarded my comments about side effects I would certainly consider changing dr's.  Fortunatly so far my Dr has been really nice and informative, listened to my fears and answered my questions.

[orphanedhawk]

stormy and 1oftheclub:
She's not doing triple therapy, she's genotype 2.
I wondered about her blood work too.

Sandra:
Ideally it's best to have a hepatologist ( liver doctor) experienced in hep C treatment, not just a GI.

[1oftheclub222]

Oh, so if you are type 2 and doing dual therapy, the 12 week mark doesn't determine if you stop or not?  My insurance didn't approve my meds for the whole 6 months, only for 4 months, I thought that was why, thought I had read that on here before, but maybe I'm wrong.

[orphanedhawk]

Only the triple therapy is response based.

As I re-read this I realize many here have had tx extended because of a slow response while doing dual therapy.

Personally, I think if I had not responded quickly, my hepatologist would have wanted me to continue beyond 24 weeks ( because of the theory of extended tx for post tp patients)

As far as Insurance goes, remember they are profit based so decisions they make are not always about what is best for your health.

[sandra1021]

Thank you for your comment and yes I am going to get a 2nd opinion on Dr. something just doesn't feel right. I wish my regular Dr. could do treatment she is the only Dr. that listened to me when I said something was off with me. I  tried 3 other Dr.'s before I found her. She did the HCV test thank God for her. When she told me she said my tx would be 24 to 48 weeks and the HCV Dr. is the one who said easy to cure 12 to 24. Which really was better news but now he says 24. My blood work is white cells down but not dangerous, Red low but not dangerous but platlets very low and my last shot left a very lg bruise and last time blood was drawn it bleed for quite a while and left a lg bruise. This is all I am told. Tomorrow I have blood work done again and I ordered all my blood work and lab test so I can see and talk to someone else. I have good days which I treasure but some days are really bad but I just want this virus gone forever. Thanks for all your comments and bless all of you in your journey of life and I hope it is a long happy one.