relapse of hcv 1 after one year combo treatemnt

anybody have any relapse suggestions? i was clear for 9 months during treatment, stopped treatment in sept. 05. just took 6 month test & load up to 9600. tiny but pisses me off after all i went thru! anybody have that happen? what did you do? my doc has me back on riba (800 per day) and 180 peg-inter. just started a week ago. i sure hope it is not like last ime.....
arghh
jerialice

[SJL]

I for one have relapsed twice-----but I am still willing to go the 3rd. round when it is available. I also had 6 straight undetectables on the Infergen/Riba. I am on Pegasys maintainence now, just waiting.

I know the disappointment, but hang in there.

Jim-Hope you catch this---CONGRATULATIONS, you sure deserve this.

Please continue on the forum, we need your expertise!!!

[imbetternow]

I just got the news today. I have been clear since 10/07/05.
This is my second round of treatment. I have been on tx for 54 weeks. I'm now at a little less the 9k. Bad part is I'm geno 2a and should respond. Better change my user name.

Good Luck to all!

[tulsatime]

Hi, I am so sorry you are going through this. It can be so discouraging when you relapse.I know your disappointment, I too have relapsed on my 6mo post. I just got the news last month. You are not alone in this fight. I am going back on treatment reba/peg for 48 weeks. I am geno 2. Don't give up and take care!!

[beamishboy]

nothing to add, but do send hope & strength- it suxs & i wish y'all GOODLUCK going forward.....

[amirtracy]

I'm sorry to read about your relapse.  I'm on week 7 of my 1st treatment and people like you are hereos to me. i don't know the joy of svr yet but i totally live in fear of this not working. i promise to try not to complain ever again. best of luck to you.   tracy

[jmjm530]

Sorry about your test results.

It's a little confusing when you say you'e been clear since 10/5/05. Have you tested "clear" before after stopping the treatment drugs, or is this your first test after stopping treatment?

If the latter, you may have relapsed some time ago and just not been aware of it. Some suggest that 90% of all relapses occur within 30 days of stopping the treatment drugs.

BTW 54 weeks seems like a long time for a 2A to treat. Maybe you should get a second opinion from a liver specialist (hepatologist) before you make future decisions. They usually can be found at your larger, teaching hospitals.

All the best in the future.

-- Jim

[jmjm530]

As far as suggestions, so much depends on your genotype, age, amount of liver damage, general health, and exactly what happened on the first round of treatment. That said, unless you're a genotype 2, 800 mg/day of ribavirin seems a bit on the low side. If you have any doubts at all about your current care, it's always a good idea to get a second opinion from a liver specialist (hepatologist). They usually can be found at your larger, teaching hospitals. None of us here are doctors. However, if you want to give some more specific information, maybe we can be of some limited help.

-- Jim

[dyce]

Sorry to hear your test came back posative, I'm prayin the 2nd rd kills the b--tards!

Dyce

[jmjm530]

Just caught your post. Thanks again for your support, but it's still only a two-week (or three week) post-treatment PCR depending on how you count. I think the next PCR and one at 3-months will tell more of the story. Still, I feel A LOT better receiving these results. To do all over again, I would have waited a few weeks more before my first post-treatment PCR -- but given some raised enzymes in my chem screen, I guess it served to give me some at least temporary piece of mind after several tense days of waiting.

-- Jim

[dyce]

So glad to hear your good news! I know it's still early in the post tx but that is really encouraging to hear. Last nite I slept 8 full hours and this is the best I've felt on tx since starting. I've also noticed improvments already , digestive, itching, anxiety.

Hope you have a good day and I'm rootin for ya,
Dyce

[amirtracy]

JIM,
i'm totally pulling for you! i have a good feeling about it tho'. you're karma will definently pull you through this. as much as you do for others it's bound to mean svr forever for you. your knowledge has totally helped me so THANK YOU! tracy

[GoofyDad]

Sorry to hear about the dissappointing news guys.

imbetter - what a bummer. You know, we have had discussions here about false positives. They have been reported indirectly from a couple places. I think one hepatologist said he wouldn't base any major decision on a single positive report. I would try for an immediate retest. A breakthrough that far along is really a shock. Please keep us updated.

And keep the handle. It's the right one for you.

[Mister beagle bailey]

I feel for you guys and hearing that geno 2's have relaped doesn't make me feel any better, as I'm a 2B.  My prayers are with all of yous. What was your PCR at weeks 12 and 24....?
How were your sxs during tx?

Beagle

[Mister beagle bailey]

jim-- I know it's to soon, but still congrat on you PCR results.  Like all I hope it stays undetectable.


dyce-- So glad your sxs are getting better, I told you they would.  It's like the body ajusts to the meds.

Hope both have a great week end,

Beagle

[dyce]

Thanks beagel for all the encouragment, your a saint! How are the sx's this mornin? Just had wheat french toast with peanut butter and jelly, livin large this morning and I have the best energy since starting tx.

Your gettin down the road with this, I can't wait til ya finish.

Dyce

[Mister beagle bailey]

My sxs have eased up like your's and have been eating good.  Tomorrow will be # 15 with 9 to go.  For me this is amazing as my HGB is only 8.3, go figure.
Just did alot of work out in the yard, power washed the house and driveway, planted some bushes and did work on my classic car.  It's a 1967 ford galaxie convertible with a 428 engine, cobra jet police intercepter.
Have no idea whwere the energy is coming from , maybe it's the B 12 shot I get every week.

So glad your sxs are better.

Beagle

[dyce]

Wait a minute guy, you didn't slip into that redcross outfit did ya ?

Dyce

[Mister beagle bailey]

I'll never tell!!

Beagle

[NYgirl]

Jim that is GREAT NEWS.  Just the fact that you now KNOW you are holding your own after stopping the meds is one of the biggest things I can think you could breath a sigh of relief for.  If anybody deserves SVR boy you do. Please don't disappear no matter what - too many people need your wisdom (and your humor).

To both of the relapsers - I am SO SORRY that I know no words can make a difference to you but I just wanted to say...never give up. New meds are coming and there are now new treatments specifically FOR people who have relapsed (like the Infergen) which has shown great results in some.

I am just heartbroken for your news.

PS The 800 DOES sound light to me on the Riba too. I only weighed 130 or so at the start of treatment (at 5'7 I'm very thin - I gainned 5 pounds just to do tx at my doctors request before I started) and I chose to go on 1,000 a day.  Now at 117 pounds (yeah I'm skeletal) I am still on that much. Aside from the anemia which is holding on fine now with Epogen...I haven't had too bad a time with the Riba sides.

[OnAPrettyPoison]

Mr. BB, was that you that I saw in the black cape flitting around my back yard???  You could have washed my truck too - especially since my hose nozzle got refrigerated the last time I washed my truck.  

My hgb is low enough to bother me now and my labs didn't come back Friday so I won't know what they are till Monday.

Jim - congrats on the clear PCR, even if it is early.  Your karma will see you to SVR, you certainly deserve it putting up with all of us!

Dyce, glad your sx are better - hang on in there.

[dyce]

Ha pretty, sorry to hear your feelin a little rough there. Let us know how the labs look. Your gonna be fine , just keep up the good work!

Dyce

[jerialice]

ok-
my liver is still in great shape, altho i have had a bit of ache on my side off and on. i responded after 12 weeks on combo treatment. and stayed clear until after treatment - 48 weeks worth.
the positive results came back after 6 months off, so i don't know when it really kicked back in?
i have geno 1 and am only taking 800 riba due to my weight and bad side effects from the pills. i only wiegh 111 lbs and was down to 107. i am a small person anyway.

has anyone actually cleared after a relapse? i am at 9K give or take- should i get another test? we went thru quest which is the supposedly hot lab for these type of tests. my doc kept telling me i responded so great that i would clear for sure, that was part of the shock- wah. i feel ok and in fact was feeling great. it's 2 weeks in so
i am just hoping the sides won't be so awful this time...

[jerialice]

we did not talk about time, altho i seem to remember 3-6 months being thrown around the room. i was so stunned, i missed it. she just gave me samples of this new injection type dealie that sucks! ihave wasted 4 shots of it cause ya can't get the thingie right.... i am going to be able to get back on pegasys i guess. i go backnext friday and will have better sense to ask questions. we test again on week 12. i started out with 1/2 mil load back in '04.
i wish they could give us better info- this is a hard treatment for no gain.

i was real healthy before i started this time, so i pray i will not be so knocked down.
plus i am mad!!!! last time i was depressed-that was the year from hell. have you talked to your doc about infergen?
thanks!

[cuteus]

I think you are very brave to jump back into the tx wagon after living med free for so many months and enjoying some normalcy!  i agree with jm, 800mg is low if you are a geno one.  When did you clear the first time? were you undetected 12 wks into tx? for folks that are still detectable at 12 wks, extended tx seems to be improving SVR. Keep us posted.

Imbetter, try to get the test repeated asap, to rule out the false positive! what a pain in the a$$ to see those results! If the next one confirms the positive, it would seem that your strain of hcv has found a way around the meds and is shielded from its power. If it was a false positive, how much longer will you treat? The same thing happened to lvdbygod and Ina, but their drs did not repeat the PCR, so they will never know if it was a true breakthrough. Ina seems to be on her way to SVR after almost two yrs on tx, she is g2 also. Lvdbygod will be done soon, after over two yrs on tx also, she is g3. Let's hope for a negative next time!

[jerialice]

hi everyone and kalio-
took 2nd shot friday and seem to be doing ok. last time around i didn't have problems until the 3 month. i hope to breeze thru it this time (!) i still don't know how long to take tx for since my load was so low. does anyone think that makes a difference? also i will start rbc support much sooner. is one better than the other? procrit is what i used last time, but i think there is another type????

also has anyone heard about viramidine? it is a ribe replacement that is supposed to be less destructive. i am determined to get this stuff out of body, altho i realize many folks just live with it. i am blessed in that i am still a great health, no obviuos liver probs. a few aches here and there which my doc says is swelling of the sac around the liver due to the ongoing fight.

did any of you guys have bad dizzyness? hope everyone is hopeful and taking this the best you can. it's gotta get better.
jerialice