Calling all Post 1's

[honey1616]

Hey,,,I'm starting to feel like genotype 1 equals relapse!! Would everyone that is out there lurking or post tx,,,,please let us know your experience if genotype 1 regarding how long you did tx etc...  Thanks so much!!

[Sioux]

Geno 1a 48 week tx. clear at 12 weeks and after 48. I will have my 6mo. in Sept.
I am F/45, Fibrosis grade 2. V/l at beginngin of tx was 10 million
As far as post tx sides. Fibromyalgia.

[Amerabrit]

Honey, now stop that.  I'm a 1 also and you and I are on the same team, remember?  We're not in this to lose.
Sioux.  Expecting really good news from you come September.

[honey1616]

Sioux,,,Thanks and we all will be thinking of you next month!!

Amerabrit,,,I know,,,I'm sorry but lately you got to admit,,,there has been not alot of great news coming through on 1's so actually this thread should be interesting to see who responds and their experiences..

[kennedge]

1a
48 wk tx
post tx 7 month
12 wk 500< (not heptimax)
24 wk 5<
48 wk 5<
12 wk post no virus detected
6 month post no virus detected

[DownThisRoad]

1a genotype, 46 female.  I finished my tx (first time treatment) at the end of May 2004.  The duration of my tx meds was 56 weeks.  I was undetectable at 16 weeks (below 50) and remain undetectable as of my 56 week PCR test.

I will have my PCR test to check for status of the virus at the end of this month (with fingers crossed).

~dtr.

[Amerabrit]

You're right Honey and you're asking a valid question, but with every "study" you have to consider the variables.  Unless those responding to you give you a complete history; i.e. dosage compliance; alcohol consumption; sexual history, drug use and any other illnesses while on tx., etc., etc., I'm not sure how useful the info is?  I am always interested in the answers to those questions myself and have asked them in previous threads but sadly, the answers haven't been posted.  That lack of info is more discouraging to me than the projected relapse numbers. I sincerely hope this thread proves me wrong and we read some complete responses. In the meantime though I'm looking forward to reading your "24 wk clear" post.
Very best wishes to you as always:).

[newb]

1-B. Low viral load, female, 50 y.o. minimal liver damage.
Pegasys and riba for 48 weeks.
Finished tx on 12/31/03.
First  post tx PCR test 7/04.
relapsed- pcr at +200,000
:-(


life goes on........

[DonL]

I am nearing 48 weeks (#43 on Fri), a 1B, low viral load, low fibrosis, and undetectable at 12 and 24 weeks. Just as scared about relapse as you, but what can you do except what we've been doing? Best of luck to you and Sioux and to all of us.

[Showboat]

Hey, girlie....(giving you big hug)  Remember Indy WAS a 1...my hubby WAS a l.....I am a 3a and tried tx 3 times.....(fingers crossed for this time)  I was happy my hubby cleared after his one and only tx. (48 weeks..Peg/combo....he was a 1a)......and as a 3a, I did not clear...so....who knows?  My 6 month PCR is October. My prior tx was mono, and then a blind study...(inter and placebo or riba...I got the placebo...crud!!!)  I am sending you lots of positive vibes and good energy.  I think we all have our worries and doubts and fears...tx is not a picnic and we sure do go through a lot of physical and mental changes.  Whew!!!!!! Peace and love to ya

[ts2010]

Hi honey15637,

I was 1a
52 weeks of Pegasys/Ribavirin (1,000 mg daily)(100% compliant)
Cleared at week 5
Clear all through tx
Clear at 6 month post tx
12 month test due in October

Hang in there,
TS

[missers]

My 45 yr old husband is genotype 1

At initial discovery, viral load 19 million plus

Biopsy showed stage 2-3

He started tx in Feb'03 (Pegasys/Copegus) for 48 weeks

He was an EVR - undetected at 12 week Heptimax

Stayed clear all through tx

Finished tx end of 1/04

Six month post tx Heptimax shows a relapse w/viral load 2 million plus:(

Going for round 2 starting in September

[Indiana]

1B
850,000 IU/ML load
51 yrs old at tx time
HAD Hcv approx 30 years
No biopsy
Low body weight.....6' 165 lbs
No real noticeable symptoms before tx.
50 weeks Peg/Intron & Riba
Took multivitamin(no Iron), vitamins C & E,& Folic Acid with tx.
Lost 25 lbs during tx
Had "Medium" sides....it kicked my a$$
Worked most days I wanted to through tx.
Sex=Male
Sex history?? = Yep...I had sex with women a FEW times in my life....No animals but some "appearence challenged".
Lowered Peg dose by 25% for 3 weeks at 8 months due to low neutrophil count after tooth infection.
Clear at 24 weeks <600
Clear at 4 weeks post tx <50
Clear at 6 month post tx <50
"CURED" at 1 year post tx <50
NO lasting side effects from tx.....except I did lose my Butt.
Have not really been sick a single day since stopping tx
I now feel better than I have in 20 years!!!
Future plans include laughing every day, becomming a sex addict, outliving another Doctor, and helping others through tx.

Did I forget anything Ameribrit ???????

[Galen]

Type 1B, low viral load, minimal damage, did 48 weeks of Peg-Intron/800 mg Riba, finished in 9/2003, CLEAR!!, go for 1 year next month.
Indy WAS a 1 too and is clear past one year along with many, many others.  We have a tendency to fall off this board after a while as life goes on.  There are a few, like Bart, who are clear multiple years.  
Stay hopeful!!

[tigerpants]

49/Female,
minimal inflammation only,
300,000 VL
100% compliant
1a
28/48 then forced to stop due to Dr. Idiot not Rx'ing Procrit or  Neupogen. Immune system failure followed.
cleared between 12 and 15weeks (labs were messed up so not sure)
undetectable by Heptimax at 24 months and 6 months.
Then 30 days after last meds at 28 weeks...
Hello Dragon.  VL at 1.4 million , then 90 days later 3.0 million.
still having  joint pain and still chosing not to retreat until  something better my way comes !
Still see GI (no not the idiot) every  3 months.
Just found out I have eye damage from meds.
My hat is off to those able to do the full  TX.
I the mean time.. I am traveling and doing what I want, except the booze..don't even miss it.
There is a life after relapse..hopefully  a long enough one without damage to be able to keep waiting for that new and improved TX.

[tigerpants]

oopps.. that was 24 weeks not months.. sorry

[relentless]

All clear at 2 months post tx....alt and ast lower than anytime over last 25 years...feeling great after holding my breath for 48 weeks of pegasys and riba. Started feeling better after first week just knowing that I didn't have to take that stuff anymore. Energy back...golf game back...thank you Roche Pharmaceutical and to everyone on this board for helping chart the course through the gauntlet. My formula was stop coffee and switch to on cup of tea in the morning....tons of water all day (woke up to pee all night)...better diet...yoga...walking....great spousal support...never missed a dose.....not a drinker for past 10 years....1b, load 5,000,000, stage 3, grade 3, 30 years infected....prepared for the worst and hoped for the best....4 more months to go for final blood work. Hope you all get through to journey and kichk some HepC butt. Its worth the effort either way!!!

[DoubleDose]

Was a Type 1-B, viral load 1.2 million IU.

First tx'ed in 1998, with 14 months of variable combination tx.  Intron 3x/wk w/riba, intron daily w/ riba, and the last 5 months of that tx: Infergen 15 mcg/day plus reduced dose riba.  Cleared for last five months, relapsed in one month post tx.

Second tx began in 2002, using Peg-Intron for 18 months at about twice the standard dosage, or in my case about 2.8 mcg/kg of body weight, plus 1200 mg. riba daily, plus after 3 months of tx, used procrit 2x/week until end of tx.

No dose reduction until last three months, and even then very minimal reduction of Peg and Riba down to 2.0 mcg/kg on the Peg, and 1000 mgs. Riba/day.

Was undetected on tx from week 19 until the end of my EIGHTEEN MONTH therapy.  

Remained undetected on the 1 month post-tx PCR, on the 3 month post-tx PCR, and on the 6 month post-tx PCR, using both Qualitative and Quantitative tests, sensitive to >5 IU/ml.

I am now 10 months post tx, and will be tested again at 18 months post-tx.  My doc considers me SVR and quotes 1% or less relapse for those clear at 6 months post tx.  He says HE has never seen it in his practice, and has treated several thousand HCV patients, with hundreds of SVR's.

Keep the dosage high enough, keep the riba up there at max levels, and do whatever extended time is indicated for your particular case.  It can be eradicated, you just need to get EVERY SINGLE COPY...which may take awhile!!!

[layla]

I am with ameribrit on this one for sure. How relevent is the info unless you have all the tx information. I imagine just the fact of doing 48 wks over 24 changes the number of people who can do full doses. There are so many things to factor in to make any sense of this. Anyway I'll let you know if I am SVR in about 6 months. The good thing is it does happen!!! LL

[snook_man]

I know personally from family and friends, of five people that where genotype 1's, and three relasped..I worry about going through this whole deal for nothing everyday, and was probably part of my initial fear and anxiety attacks when I started back in May.. And keeps me from jumping right back into it...We honestly do not know, and Dr's do not HONESTLY know whether or not we are going to achieve SVR..They just Rx the only thing out there right now that has shown effective, regardless of sx's and risks..That is why it is so important to do ALL the research you can on your own, before hand, as too know and be CONFIDENT in YOUR decision to TX..Look at Rev's determination to kill his dragon..He has all the odds against him, he did his homework, and made the choice to go for the gusto!!I know that he is cured, and probably has the liver of a 5 year old by now..
I believe that extending so long, was HIS decision based on his own information found, and his stubborn attitude that got him through 83 or so weeks now!! Damn, if you are responding to tx, it is up to you  to research your labs, ask for all the tests,and to find out exactly when you cleared, as to know whether 48 weeks is enough..Dr's will stand behind recommendations made by lawyers, and pharmacutical companies as to recommended lenght of tx over YOUR personal need to achieve SVR..Better believe that, as lawsuits are putting the medical field on the defense..
Yes, there are a few, that do not respond at all to tx, but the % is low, and new approaches to tx are finding ways around that also..
Whether or not, others have cleared, or relasped, or not responded, you should know by now, that EVERYONES case is different. This disease effects each person differently, and no two cases are the same..All you, or I, or any of us can do, is make a CONFIDENT decision to give it our all, and stand behind that decision regardless of the outcome..It is one hell of a thing to ask of anybody, as it is one decision I personally have found myself fighting every hour of the day, but one we all must make..One of these days, soon, I'll be confident in my decision, and I will be cured too..Be confident, the odds are getting better, and extending tx from time of undetectable pcr is the key..Many Dr's are just realizing the importance of tx extension, and everyone of them are learning as they go..I feel if you are already tx'ing, you made the decision already, and there is no turning back!!! Put all your focus into your labs, and continuing on course..Question your Dr, and make him realize your wealth of knowledge and determination to rid yourself of this thing!!Some Dr's actually love to be questioned and see an informed patient. Just my 2 cents, sorry to use you as a reference there Rev, but you SHOULD be an inspiration to anyone questioning the odds..Personal determination and the most up to date information, can overcome the odds..Best of luck to us ALL!!!!!

[AK - Hepper]

1B
52 weeks pegasys/riba, starting v.l. 376,000
12 week pcr v.l. 990
24 week pcr v.l. <5
44 week pcr v.l. <5
4 month post tx pcr v.l. 741

[styopa]

1a
49 yo male
stage 3, grade 4
VL 8.5 mil
48 wks of tough tx
undetected at 12 wks of tx & 4 mo post tx
going in for one-year post-tx blood work tomorrow
nervous as hell, feeling great otherwise!

[honey1616]

Hey Guys,,,You have some great points here and yes,,,There is no going back so staying focused and just saying,,,this is the best I can do,,,Thats all we can do and I have to let it go at that.  I looked over SVR and could not find a pattern for that either so guess that is not the answer. I'm so happy for all of you that have reached SVR!!  And for all the ones coming up for 6 month post,,,,you will be in our prayers!  The hardest section to address is those of you who relapsed as of course that is all of our biggest fear and my heart goes out to you!! I pray that if choosing to do tx again,,,that will be the time for you to clear and for you that are waiting for something new,,,Best of Luck!!

[Helyn]

Hi.  I did answer your answer to my initial question!  - I just got to it - haven't had a chance to be on line at home in a few days.  

Take care, and keep in touch.  This support group is wonderful!
Helyn

[Amerabrit]

You forgot your credit card number:).