failed after 13 months

I was on pegasys weekly shots and rebatol (5 pills daily). The viral load slowly went down, finally on the 13th month it was negative, doctor discontinued the rebatol but continued the shots, after 2 months my viral load has reappeared (200). Honestly, I am crushed. I was finally feeling better after stopping the "devil pills", and now it looks like I have to do it all again. Has anyone had to do the combo treatment for longer than a year, with good results? Or do some of us not get cured? What a dissapointment. Thank you for any comments.

Signed,
Here we go again.

[PhilaGuy]

I know this isn't the question, but should you have been on therapy so long if your viral load went down so slowly, and didn't clear until month 13?  What's everyone's thoughts?

[TnHepGuy_]

I'm very sorry to hear the news of the viral breakthrough. Having failed tx once myself, I know there can be great disappointment.

I also don't understand your doctor's line of reasoning re: your tx regime. If he kept you on tx to get you to the point of clearance - and it took a total of 13 motnhs to do so - then I would have expected him to NOT discontinue riba so quickly, and to extend your tx another 36 weeks, or thereabouts, to try and get the highest odds possible for your SVR. When you consider that if geno 1's clear by week #12 - they still have another 36 weeks of BOTH medicines to reach the generally accepted version of tx protocol, it seems like he pulled you off the riba too quickly. Of course, I am basiing this on very little information - and he may very well have had extenuating reasons.


'layla' and 'doll face' are two here at the forum who are currently beyond the one-year point - with each doing both interferon and riba.


May God's blessings and mercy be upon you.


TnHepGuy

[n2cats15]

It seems to me that the thinking has changed on this subject.  

When I started treatment in January 2004 my doc told me that i would be doing 48 weeks, period - whether I cleared or not.  Then at my 12 week visit with him I was told that if I didn't have a "significant drop" in viral load I would be taken off treatment.  I guess there is new thinking that if you haven't cleared by 12 weeks there is no significant benefit of on staying on treatment.

My viral load went from 858,000 to 2,00 at 11 weeks.  At 24 weeks I was told that if I hadna't cleared the virus I would be taken off treatment for the same reasons as before.  Thank God I have cleared the virus!!!!

I am wondering  - with this new philosophy - why are people doing this for 52 - 72 weeks?

[cindyazure]

today is week 62 and shot 48 ... my final dose.  Thank you all for your support and please keep in your prayers.  It took me 62 weeks to complete due to all the times I was taken off meds due to low blood counts.  I haen't beenaround lately due to a death in my family.  I'll keep you posted as I find out my results.  It took a long time but worth every minute.  Hang in there all.  love, cindy

[DownThisRoad]

I'm so sorry.......I am so lost for words as I read your post.

I just treated and did the meds for 56 weeks.  I finished up about a month ago.  1a genotype. The anticipation of the test and the test results is sometimes, almost unbearable.  Whirling around and around, and around in my head...constantly.
I'm expecting good results, undetectable results when I have my PCR test the end of August....but I know that there are no promises to stay clear.  This virus is so tricky and the meds are even more brutal and unpredictable.
I just wish you a peace of mind with all of this.  When I think about the unpredictable results with this whole deal...I actually find myself getting very depressed and my mind wandering further.
Hopefully someday there will be a medication(s) that will be more accurate in ridding ourselves with this disease and more patient friendly.

Keep the faith.
~dtr.

[Sam Hall]

I dont know or give a monkeys about you and Inddys dispute however i oftenread your posts and find them intreauging ammusing and often full of spot on info. I got sick to death of being told that every little show of irratbility was due to tx...clearly some was(grabbing the KFC bloke over the counter coz he would't take plastic) I spent a long time giving lectures to psychs and nurses to try to help them distinguish the differences between tx behavior and mental health problems. And they strugglrd believ me. I found the whole process of my emotional expressins being doubted de-humanising. Your also right none of us are in charge of this forum but isee a lot of subtle gagging and undermining going on. Speak ya minds but dont let that ringeding near ya takle she'll whip it off in no time.
My name is Samuel Hall

[no where to turn to]

I was on the same tx just short of a year and my viral load never went down like it should have. Now my Dr's are saying no need to do it a second time since I'm a 1A. After taking the rebatol for that long I now have more medical problem than I started out with. They are telling me now a certain percent of pt's rebatol is real hard on. But not to worry if I take care of myself I will be okay longer than they said at first. I have plumonary hypertension now and than can't say that the tx did't cause this problem. What I do now is take care of myself and pray for good health for myself and everyone who is fighting this problem that has everyone so confused even the Dr's. My thoughts are with you.

[louisep]

Sorry to jump in on this but just wanted to say hello  to you all....I've really missed you guys.  Hubby & I are finally settled here in Spain & have just got reconnected today.

Finished tx May 17th after quite a rough ride and I'm finally beginning to feel almost human again!  Still got some weird sides.....hearing problems, dexterity problems, numbness in fingers & toes, & get days where I feel diorientated & confused, but all in all I feel much better.  My hair has also stopped falling out which is a bonus of course!

I guess it will take time to recover fully & I can't thank you all enough for being there for me through this nightmare with your kind words of encouragement, comfort & advice.  Couldn't have got through this without you guys.

Best wishes to each & everyone of you,
Louise

Cindyazure.....Sooooo sorry to hear your sad news....will e mail you later with my new e mail addy.

[cuteus]

If I understand your post correctly, you feel that the new thinking is to stop tx if not clear at wk 24. That actually is the "standard" and has been for a while. Because many studies give a higher SVR chance at those with EVR, drs feel that continuing tx might be a waste of time. New studies show that longer tx in those not evr or slow responders, might increase the svr, particularly in geno 1.
My practice, back in july 03, said the same thing, if not significant drop by week 12 and cleared by 24, I am out of there. I had to convince them, with copies of new studies in hand to extend my tx to increase my chance at svr, since I cleared after wk 12.

Hola, como estas? Nice to see you again, how are you feeling post Tx?

[Tony-z]

I am so sorry that after you put all that time into kicking the dragons butt, you have to hear the dreaded news that the dragon has won this match.
I have heard that news twice before and i am genotype 2B.
I am now starting my third TX pegasys and ribo X 48 wk's.
If your Dr is very knowladgable in treating Hep-C then you and him need to talk about your next stratagy. If he is not, then  get a second opinion from good Hepatologist before trying again.

            God Bless you and your family.

                   TonyZ

[layla]

I have been on combo. peg and riba for 69 weeks but had I still been detectable at 24 I would have been taken off tx. At 12 weeks I did have more than a 2 log drop so I continued and was clear at 24 weeks on the most sensative test Becasue I am a genotype 1, which have lesser chances of SVR, my doc and I chose to do tx for 48 weeks from clearing. My sx were not to bad at the time. I still get by but some weeks have been rough. The worse is my thyroid burnt up a month or two ago. I won't know if I am SVR for 6 months post tx. I finish in 3 weeks. I am very surprised your doc kept you on tx for such a long time when you did not clear. I believe if you don't have a 2 log drop or clear in the first 12 to 24 weeks your SVR chances are less than 3%. Maybe he kept you on for the effects from the peg on your liver? Sorry to hear it didn't work out for you. I personally would speak to another hapatologist. LL

[Sam Hall]

yes you are remarkable and tough and brave. I hope you find the strenghth to face what choices you're given. Good luck mat.
Sam

[mikesimon]

Just a short post to let you know that you're not alone. I relapsed after clearing and am now finished with my third round - 72 weeks Pegasys and ribavirin - and waiting once again to see if it works. Yes, it is crushing and I feel for you. Just try not to get so discouraged that you give up hope. Hang in there and try to take it one day at a time. Good luck. Mike

[DonL]

Clinton did more to fight terrorism working half-time (fighting the Republican attack machine and, yes, self destructing) than Bush did until 9-11. And now, what exactly has Iraq to do with Al Queda, except that we have now created an incubator for terrorists?

And why does one's patriotism get questioned if you disagree with the Bush-Chaney-Rumsfeld-Rove party line? I thought American meant that your government allowed you to disagree. All this Fox News-Rush Limbaugh tirade ****--these guys lie and then when you point it out, question your patriotism. Outshouting is not debating.

During Vietnam, we took it out on the troops as much as anyone else. Some of them were volunteers and some just got drafted and at the time we believed in personal responsibility, so yeah, each of them was guilty in our eyes, wrongly as it turned out. So yeah, the Army is ready to fight. Let's get a government that can tell the difference between a terrorist and payback. Support our troops but arrest the men who sent them there.

Political debate in this country has turned into arrogant, bullies out-shouting people who try to reason and believe, maybe wrongly, in a government of, by, and for the people, not the richest 1%. The Democrats have plenty of flaws, but they don't have Carl Rove grabbing power, cynical mouthing of Christian pieties, or **** Chaney telling Leahy to go f*ck himself the day Congress passed increased penalties for indeceny on TV and not giving a sh*t about it. How many people went to jail for Whitewater? (1 and 1 more for not ratting) How many people went to jail for Iran-Contra? (32 at last count)

And Bush, the fake cowboy hero, putting us in their face? The world does not belong to America. Democracy is pretty inefficient and so is the UN, but it's all we've got. He let Bin Laden escape (Rumsfeld's "minimal army presence"), he took the sympathy of the world and pissed on it. The man was a C student, doesn't read newspapers, failed at every business he ever entered, snorted a couple of pounds of coke while getting a rich man's deferment, can't deliver a complete sentence, and now acts like the cowboy hero? "I say there is is a connection between Al Queda and Bin Laden because there is a connection." He doesn't even have the grace to claim national security as the reason he can't deliver even a second sentence on the subject.

No, I'm for a government that has the best interests of its people at heart, that is run by smart and educated men and women who know the lessons of history and have a goal that is grander than making their friends rich and maintaining their own narrow power base. People who can debate rather than bully. If that makes me a tree-hugging liberal Democrat, get me a tree. Rather that than a neocon.

I could go on. I know this isn't the place for this and I apologize, but I can't keep my mouth shut.

[honey1616]

That is stated like a true "intereron Junkie" or better yet..."liberal democrat" haha

Hey,,,Go for the GUSTO! You only live once right...Go over the Falls but don't repeat the same mistake in history!!  Do you ever watch Dave Letterman?  Hahaha The presidents moment on air....Too funny!

I can honestly say as being at the 6th month mark,,,I do have moments that I don't feel great and my energy level is down so to speak,,,,However,,,I still see things crystal clear and my mind is working just fine!

[snook_man]

Man, here I read some posts, and think your judgement is on point, and you are almost brilliant with your comments, then Bam. Robbing Iraq, and sending soldiers to their death, my god?? Your judgment is definately altered or the tx has made you mad, as Indy said!! LOL!! I would go in an eye blink if the army would take me. The reason we are such a target for these terrorists, is the weakness of our citizens. Lets all sit around and watch Oprah, or Dr. Phil.  Should we do what the democrats want, and just go hug the murderers and send them tax money and relief. Then complain that we don't have funding for our own people. We might as well open the doors and let them kill us all!! Soldiers go to war, because they want to!! They sign up for it, and want to do something for their country, and themselves. We are not robbing Iraq, that is the United Nations job. They cleaned out billions. That is why they were against us going in. Also France, the yellow bastards, funding and sending weapons and arms to Iraq. The germans are the reason there is a Centrifuge in the University of Iraq. We haven't found the weapons yet, but they had the technology, for sure. where they hid it is another story. And as for weapons of mass destruction, is that we are looking for?? In that case, we found millions!! Every single one of those Al Queda cowards is a weapon of mass destruction. One single person is as deadly as a small army. They fight because they believe that is what their God has ordered them to do. How do you fight such people? The battle will never end, unless people die. Would you like it to be you or them.All this hostillity in the middle east, was created by Clinton. Clinton bombed Bin Ladens family, entire family, and did it like a coward from a phone and a navy battle ship. Bush at least put us in their face, like men. We will not stand for that kind of ****!!! Remember how soldiers used to be looked upon with honor and courage, now they are dergraded, and belittled, because they point a prisoner that tried to kill them in the wrong direction to pray.My opinion, they should have shot him. My tax money should be put to better use than feeding and moral treatmenet of murderers!!! Thank God, you do not consider yourself a "liberal", there is still some hope for you. I will end here, as I want to leave room to talk about genetial warts, and horse grooming.

[snook_man]

LOL!! We both vented, and feel so much better, AHHHHH!! Politics are such a sensitive subject, and it IS better left alone. I definately don't want to start a love hate relationship like you and Indy, I don't swing that way!! LOL!!! Now back to genitial warts, and dirt clogs!!

[cuteus]

somebody HOLD that kitty!

[cindee]

reMarkable, Hi and I'm so sorry to hear you got the same news I rec'vd also. I did 100% of rebatol/pegasys...geno1A 48wks of tx. I have since changed doctors...I was going to a G.I. who I now know he didn't know "squat" about hep c. I was told by his receptonist in the parking lot, that I had relapsed! Never heard another word from dr/goofy. I've fond a wonderful new hepatologist and I will be doing a clinical trial study around Oct. When I was in his waiting rm I started talking w/ a lady and I asked her if she was on tx? She said she almost died on tx and her dr. was out of town. She was rushed to ER and doctors took her off all tx meds. When she went back to her liver doctor, he wanted to know WHY she was taken off her meds? She said I almost died on them! He answered her by saying, "well we all will have to die one of these days". As we talked on, we discovered we had the same dr.goofy!!!! But we were not surprised! But we were surprised that we met at another doctor's office, in a town an hour away from dr.goofy! And I know she knew what she was talking about, because she and her husband worked in the the hospital right across the st. from dr.goofy's office!

Anyway back to the relapse subject......My new hepatologist did blood work on May21st...I then had a bx about 3wks ago. I saw him last Friday...bx showed grade1 stage0-1, w/ no scarring! Pretty dang good! He told me he could put me back on combo tx again, but usually if it doesn't work the 1st time, it won't work the 2nd. So I am going to do the study trial. I was EVR, and thoughout tx was undectable. But as soon as tx finished I relapsed. He says this is what has the doctors most baffled! So we're praying w/ the new tx I will clear this time. Just my 2 cents worth is...find a clinical trial in your area. He told me my new meds would be $1,200.00 a month, but being on the trial...they will be free!!!! And try to find a hepatologist...they only study hep! I wish you the best and when you have another bx. yours might be just as good as mine! I will NOT GIVE UP until I am virus free. My bx showed that even though I relapsed...I did some real GOOD for my liver! So don't give up hope...keep your faith! You will be in my prayers!!!! Love, Cindee

cindyazure, I am so sorry to hear of your loss. I'm glad to see you back here. You've been missed! Love @ Prayers, Cindee

louisep...hey there woman! SPAIN???? Wow it must be beautiful there! Glad to hear from you! And the Best of Wishes on you "clearing"!!!!! Keep us posted!!! love @ prayers, Cindee

downthisroad......"DITTO"!!!!!! I will be praying for you to "CLEAR"!!!!! love @ prayers, Cindee

Mikesimon, Hey You! ust wanted to remind you, you are always in my prayers! You are one tough man! Love @ Prayers, Cindee

[derail]

rev,snook andall the political rants are a part of natural social behavior democracy while not necessarily the best is miles better than the rest as least we have freedom of choice and the right to disagree and if I was a young buck I would of signed up I tried during the NAM hostilities but was not acceptable?  . keep speaking up damn it and let no one say you wimped out.its the personal attacks that offend most but every other topic is ok including but not exclusively, warts dicky polishing active pussycats and even the  ones that purr for you
and dont forget the laxatives to rid the dirt lumps peace be with all and go with GOD   daryl

[snook_man]

The most destructive thing in the US right now, is not terrorist, AL Queda, Bush, Chenney, or any other, it is the liberal media, and tree huggers like you. Our freedoms, and laws, are our own worst enemy!! Some damn tree hugging lawyer from NY is saying that we have to give every captive prisoner and known terrorists, has to be given a trial and public defense at expense to the tax payer!! Didn't this same prisoner just kill our troop last week, or blow up the business man, or someones wife and child?? These murderers behead our troops daily, and not just troops, but honest business men over seas trying to make a carreer to support their family. These people do not reason, they just have a undying hatred for the US and our citizens, because they see our weakness!! Our weakness in ourselves!! We won every war before Vietnam, as we supported our troops, and leaders, instead of belittling them!! How can you win a war, and fight for your country, when your liberal citizens talk **** about your tactics?? They have effected the entire world, and the media feeds right into them. You have 30 or 40 militants hiding in a damn camel **** pile, sending gas prices up, effecting who gets elected, and causing stocks to drop and just uncertain confusion. You say that limited military let Bin Laden escape?? Damn democrats didn't want to go in, then they say that it was done wrong!! Clinton was the most parasitic leach to ever step foot in office. A disgrace to the American people!! So rushout and wait in line for a book of lies, and elect Hilary, so we just self inplode as a country.
You guys say that Chenney telling the senator to ___ off, is bad or like it was such a bad thing?? The guy was honest and a REAL man.. He just said what he honestly felt!! Boy, imagine if Clinton could have just said that instead of lying repeatedly, and cowardly avoiding every question. You should applaud honesty, and not belittle it when put in the spotlight. But then I understand that you are not used to honesty being a tree hugger and liberal.You must wipe the coals from your eyes placed to confuse you by the liberal media, and allow yourself to have a free thought on your own!! The media, liberals, and lawyers, are the GREATEST TERROR THREAT, the US people face today!! We are our own worst enemy!! So, please, release the tree, grab your balls, and wipe your eyes!! Stop watching Oprah, and Dr. Phil, and allow yourself a moment of free thought, you will be amazed at what you can accomplish!! Good day to you sir...

[cuteus]

The world through die hard republican's glasses. They might need wiping?
this whole mess was started by the so called Gulf war, we stirred the ant's nest and it came back to bite us. it always does and it will continue to as long as we feel that we are in control of the world. The American Empire will have its time and pass, just like the other empires.  WE have killed tens of thousands civilians in Iraq, yet this same liberal press, only mentions US citizens getting killed as if we were the main victims. This killing will also come back to bite us some years from now.
It goes BOTH ways, but I was brainwashed to believe US is always right, just like Christianity is. But these things are controlled by men, subject to the downfalls of human nature. WE can't be so blind as to blame only one side?

[DonL]

Look, I am trying not to insult you personally, only argue with the politics you hold. I don't watch Dr Phil and I don't equate balls with brains and I don't believe that the enemy of freedom is our own freedom. We won every war before Vietnam (except for Korea where we called a truce) because we actually declared war for a moral purpose. Vietnam was based on faulty premises (that a communist North Vietnam would threaten the dictatorial and unpoular South Vietnamese govt) and never declared as a war. Even McNamamara, the architect of that war, admitted 20 years later that he knew the war couldn't be won and was based on faulty premises. Hmm, sound familiar?

What about due process of law? Or does that only apply to American citizens (like Ken Lay) and not foreign nationals captured in a foreign country and brought to American soil? What happens when someone does that to an American citizen?

As far as talking Sh*t about your tactics--it would be nice to have our tactics explained in simple sentences not slogans and unsubstantiated claims. After 9-11, I was one of those who said, "give the guy a shot. It is time to back the President regardless of political views." It is only after it became clear that the govt had no plans for Iraq after military victory (something never in doubt) and that it had no real understanding of the region or the politics and religion and culture and didn't care to that I started speaking up.

Put yourself in the place of the Iraqi people, who watched a dictator toppled only to have the conquering army allow wholesale looting and destruction. I don't agree with the tactics or ideals of the Muslim fundamentalists at all (the 10th Century is over, like it or not), but what would you do if an army invaded the US? How would you react when they claimed to be bringing freedom, then allowed the country to be divided by different power groups? I bet you'd be bombing and beheading and feeling justified because you were conquered. That's what every side does in war--you make the other side out to be barbarians and uncivilized and call them cowards and godless and then anything you do is for the good.

I am an American and I am proud to live here. And I am proud of our form of government, in part because it allows people I disagree with to express their views. My country right or wrong didn't work in Vietnam and it won't work now. Any time any government tries to shut off dissent, it turns into a dictatorship. And by the media threat, do you mean Fox News and Hannity and Colmes and Rush Limbaugh? Or just the NY Times, the Washington Post, and the other newspapers and magazines who actually try to report facts and not innuendo.

I'm thinking for myself, my friend. It's defined as gathering information, judging its accuracy, and trying to arrive at an understanding that fits the facts, not the preconcieved notions. A knowledge of history, like Cuteus suggests, doesn't hurt either.  

Look, I am sorry to get into this on this forum, which is not a political but a medical one. I'll keep out of it now, sorry to explode. I'm blaming it on the political climate, not any chemotherapy I happen to be on.

[snook_man]

I can say, that we agree to diagree?? We are definately stronge in our opinions, and quick to defensive stance and jab at will. Buddy, I don't want a war, with my own supports, so I silence myself. Consider my outburst, a terret!! It happens at times, but again, I don't want to argue, as this is not the place. Here we are each fighting our own weapon of mass destruction hiding in each of our bloods, and liver. I am very quick to debate, as that is what I did in school, and won many times. Actually had a scholarship to Duke University, that I passed up. I've noticed lots of pissing contests on the forum this week, and less support. If you would like to continue any debate on politics, feel free to email at ***@****..