Any Geno 1 SVRs from Pegasys?

I would like to hear of any longterm sustained viral responses in genotype 1 a or b from people that were on the Pegasys and riba combo treatment. If you have had SVR of 6 months or more, please respond to this thread.

I just want to know if Pegasys has been a successful hep c drug for anybody with genotype 1. Please give details of how long you were on treatment, if it was successful.

It didn't  work for me.....
Thanks

[mikesimon]

I did Pegasys and 1000 ribavirin for 72 weeks and am still undetectable 7 months after finishing. I had done regular interferon and Peg-Intron for 48 weeks both times. I never coeared with the regular interferon and relapsed 2 weeks after stopping the Peg-Intron but I was only taking 800 mg. ribavirin. Mike

[layla]

Geno 1a, had a 2 logdrop at 12 weeks but was not undetectable. Did 71 wks full dose tx. SVR since July 04. LL

[Ambush]

1A, Pegasys, Riba 800mg/day (with a reduction in dose around 10 months in), not quite a 2 log drop at 12 wks, clear at 24 wks, completed 60 weeks in July '04, 6 month PCR in January "undetectable".  I'm sorry it didn't do the trick for you ~ keep at it, you'll get there.
ambush

[moonbaby]

1a, Pegasys/Riba 1200mg, 48 weeks, SVR since July '04. What are your stats?

Love and Light,
Moonbaby

[raheem]

I was a 1b guy and did 48 weeks of Pegasys (actually only 29 weeks at 180mcg. and 19 weeks at a reduced dosage of 135mcg.) as well as full dosage 1000mg. Copegus and I'm almost one year SVR now.

[sunspot]

Please explain what is meant by a log drop. I'm on wk 3 of Pegasys and I'm learning.

[Better Angels]

A log = 0. In other words, for each log drop you take 1 zero off the number. Example, if your viral load was 200,000 then a 1 log drop would take you to 20,000, a two log drop would take you down to 2,000.

What everyone "hopes" for is at least a 2 log drop by week 12.

I'm "hoping" for you too...

Debbe

[rearfang]

I noticed that only 2 responded to this post that reached SVR after doing only 48 weeks. I will start tx soon and know that doubledose and others are strongly advocating longer tx. I would like to think 48 weeks will do it, but I have doubts. How many others achieved SVR after 48 weeks?

[rearfang]

Hi Laika,
I had told you a week or so ago that I was going to wait and tx at the end of June, but I'm rethinking my decision...just want to get it over with. I am scheduled for my bx in a week, and want to try to start ASAP, though I don't know exactly when that will be. I know you start next weekend. Good luck to you. I'll let you know when I'll be starting.
Lauren

[Foreign girl]

I am an SVR for a year now

Foreign girl

(Formerly 1B)

[Laika]

I know the feeling you're having.  I was going to wait til my busy season was over, in Aug., but after getting my bx back and finding myself a stage 2, I didn't want to wait. I'm on for this Fri...after all the delays, doctor changes, waiting for labs etc., it's this Fri.  Maybe your bx will help you decide when it's best to start.

Laika

[relentless]

1b, 48 weeks pegasys, 1,200 copeg, SVR at end of tx 6/04.  Cleared at 12 weeks.  I figured it doesn't matter either way since I won't do tx again unless there is a breakthrough so I haven't tested since end of tx.  Feel great, so I consider myself SVR...LOL  Good luck to all.

[relentless]

Here is a site that lists the progress of over 100 folks on tx.  Check it out.

http://us.share.geocities.com/auggieaz/board.html

[md1johnson]

I was on peg intron 800 rib for almost a year never cleared . I'ts been about 2 1/2 years now my cancer marker is way up. last time it was check it was 8.5 now it's 50. Is there anyone gone fron hepc 1a to liver cancer. If so can you tell me what to look for. thanks for any info

[DH Bill]

Male, 55, 1b, 48 weeks Pegasys full dose, 1400 mg riba for 1st 24 weeks reduced to 1200 last 24 weeks by insurance company. Clear at 12 weeks, 24 weeks, SVR at post 6 months, damaged thyroid (hypo). At about 8 months post tx I'm starting to feel almost normal again. It was a long row to hoe for me but I did it!

[newb]

Thanks for the responses. I'm so happy to hear that Pegasys did the trick for so many people. I guess I can't blame it on the meds when it didn't work for me.

Moonbaby, my stats at tx start: Fem, 50, vl: under 500,000, biopsy; stage 0-1, though many extrahepatic symptoms such as fatigue, joint pain, numbness of extremeties, etc. Cleared at 12 weeks, and stayed clear throughout tx. Six month pcr showed virus returned.

I'm uplifted by your answers. It sounds like the trick is to go for 72 weeks, though that didn't work for Revenire.

Best to you all.
newb

[cuteus]

I did 72 wks of pegasys/copeg, waiting on
pCR right now.
Rev did not do 88 wks full dose, the riba was stopped after wk 51 and the interferon kept the viral load undetected the rest of the 88 wks.
hcv is full of mysteries, sometimes it seems to follow no reason. people with mild damage, low vl, evr and relapsing; then you get high vl, more damage and svr on the same meds and length of tx...too many puzzle pieces.

[cuteus]

ok, after 72 wks of the above mentioned meds, not always religiously on time with the riba, the 3 month post tx PCR is still negative. there is still a 17% of relapse until the 6th month post tx. after that, it is a 2% relapse rate, so 3 more to go...
The NP got p***ed off because I took the test on the 14th instead of the begining of March when she told me.  That would have made the test 15 wks post. oh well, so shoot me...
the next test will be in June (about 27wks post tx), they are really going to make me wait!!! ...maybe...non-compliance can go a long way...
My energy and outlook is a lot better than before Tx, and before diagnosis. But I am still in the woods for a little while longer... but
July is still hot enough for that long awaited Miller!

hang in there newbies in tx...it works and it does not mean long term damage from meds to make it happen!

[Tallblonde]

Congratulations on your great news!!

Susan

[DH Bill]

HEY, HEY, HEY! I'm so very happy for you. You are in the "Beyond 48 week Club" of the ones tougher than me. I didn't listen to my doc either at that point. I was a lot more confident when I passed the 3 month cause as you know it usually says I'M BACK before then. BTW I did enjoy my Miller.

[MajNeni]

Cuteus,
Heartfelt congratulations on passing the 3-months post tx milestone with flying colors!  I'll hold you in the Light for continued SVR.  I hope you are continuing to enjoy recovery of things you may not even have realized you'd lost over the years of HepC and tx.

Newb,
I was 1b with high VL; cleared in 48 weeks Pegasys and Copegus on my third try.  You can read details under the thread, "Allergy Medicine Post Tx"---Cao, 2/16/05.

[LvdByGod!]

Dear scott, i've been looking for an opportunity to say how sorry i am about your non clearance...i apparently wasn't arround the forum when you announced it...i was so sad to hear about it here and there while reading the posts...you really desearved to clear, helping and continueing to help others in so many ways through your extended and long treatment...i hope and pray that someday in the not too distant future you will be clear and free of this horrible disease...my heart goes out to you and all here that have not cleared...

i gotta get my groove on in that way too...as i am 3a and 14 months on tx...finally having "2" clear pcr's in a row now...

but, i also must say that my dr put me on one size too small of a dose for my wieght in riba,and it is interesting that i didn't begin to clear until i lost enough weight from tx to put me in the right catagory for my weight....

i was 265 on 1200 mgs of riba.
i should have been on 1400 for that weight.
then i lost 50 lbs and am now clearing finally.
230 lbs is the cut off for 1200 mgs.
so now i am taking the correct dose for my wieght.
1200 mgs at 217 lbs...

i also too often forget a dose of riba and that is a bummer...
must keep on being a faithful riba druggie...

scott, thank you for all your help to us...my prayers are with you...

sandi

[Califia]

I just read your post and my fingers are crossed, but my strong suspicion is that you've made it. to the other side.   Pretty altogether fabulous!     Please keep posting about your recovery process, yes?  I  know a lot of us here would find that instructive.   Actually everything you've done here has had a strong impact on my own treatment process.  Luckily, a very GOOD impact.  ;)

[Califia]

Thought I'd add to your comments about riba dosing, as it could be interesting to get feedback on my recent conclusions about why, in my case, it might indeed be worthwhile to mess around w/ things at week 36.  (Keep in mind that these conclusions are themselves mutating into new quasiconclusions even as I type.)  I reread the published Swedish pilot study and two things in particular really struck me.  First,  it took them a whole six months to titre up to the full astronomical dosages.   Second,  there was quite a spread in dosing and also in patient size.    Granted, they were adjusting dosages according to serum concentrations of riba, but weight can't help but to have a large impact on the quantity needed to achieve certain saturation levels, doncha think?

To review:  I'm afraid of subjecting myself to unnecessary toxicity, but I also know that my chances of doing 72 weeks via Kaiser Permanente are pretty slim.  That means optimizing my treatment as much as possible now.     A week ago after reading the Lindahl study, I pushed up the riba from 1000 to 1200 mg.   The next day I really felt ill, but since then I've not only adjusted but actually feel better w/ the extra stimulation.   I am reexperiencing chest sensation, but so far it seems benign.  As for further titring up, maybe, but not for another week or so.   And maybe it's not even necessary to escalate further.  

How do I rationalize this?  The lowest riba dose used in the study was 1600 mg.   The lowest patient weight  (at the start of the study) was 178 lbs.   Now, granted, trying to figure out how to achieve the study's target concentration of 15 mol/L is impossible, but that level of saturation was an arbitrary choice to begin with.  And unless one's doctor is cooperative, blood measurement is impossible anyway.    So given the dosages and weights indicated above, I'm thinking that at 130-135 lbs I may get an optimal boost by moving up to 1400 mg, but not beyond that.   Anyhow, I'll see what happens to my Hgb levels and sx tolerance.  

Could this possibly make any sense?

[TnHepGuy_]

Congratulations!!! You've got a great leg-up on getting the 6 month a-ok, too! I think your extended strategy did alot to help ensure the best outcome.

It'll be real sweet when you get to join the SVR gang.


David

[cuteus]

scott: excellent essay!  right to the core. I admit I was terrified about the lower riba before 20 wks into tx, the forgotten pills, etc. the fog kept the pills quite hidden sometimes.  because of that, the detectable vl at 12wks into tx, the desire to go through the ride only once, I pushed the calendar to 72, the fear would have kept me longer in spite of the mental and physical exhaustion, but I had to follow my GI's protocol and let go...YOU will reach your goal, I have no doubts, none.

chev and Susan; Thank you for your thoughts, I want to feel complete relief, but I must still be cautious,  your support is greatly appreciated!

[LvdByGod!]

do any of you guys have the reference for that high riba dose study handy? thanks

[TnHepGuy_]

<a href="http://www.natap.org/2005/HCV/012505_01.htm">High-dose ribavirin in combination with standard dose peginterferon for treatment of patients with chronic hepatitis C</a>

[Oreos]

1A (hopefully former 1A).  Finished up 48 weeks of 180 mcg Pegasys and 1000 mg Copegus 4 months ago.  Haven't been around here much lately.  Guess I needed some space.  Just got my 3 mos test back and undetectable and my ALT is 18!  I cleared the virus at 4 weeks.  My vl at start of tx was 264,000, alt 91 and level 2/3 fibrosis.  Tried Intron A and Reba a few years ago and only lasted 7 weeks (couldn't handle the sides)    

Great to see so many fellow 1's winning the fight.

Thanks for the post.

[Califia]

Good work!   You must be a pretty happy camper.   Have you had any thoughts about biopsying again or are you just plain finished with it?

[honey1616]

Cuteus,,,lol,,,yesterday,,,there sure was alot of news flying around here!  I'm so happy for you and yes,,,,I think you definitely have made it.  You might just have secured that SVR with you determination,,,72 weeks is looking like its the magic number for a definite clearing of 1's.  You never complained,,,I mean,,,a role model for tx so doesn't surprise me.  Congratulations!!

Oreos,,,Great News for you!  I hadn't seen you in awhile and was wondering how you were doing!  Its really nice to come here and see so many clearing and so many 1's also...It gives us all so much hope...I bet a nice feeling to not have to worry about meds anymore and think about hep all the time...Enjoy!

[TnHepGuy_]

I would think that weight would definitely be one of the major factors in riba dosing as related to serum concentration, but certainly not the only one. Many differing individual factors (eg - liver function ability, renal function, genetic factors, etc.) surely come into play when determining the level of concentration.

If your goal is to elevate your serum level to try and replicate (as best one can lacking blood testing) the pilot study, I think your 'guesswork' approach is a good one. I also can't argue with your approach of 'squeezing in' a higher riba amount, given that you were late in clearing and given that chances are that you won't be able to go beyond the standard 48 regime. And Shiffman's study may not be relevant to what you are doing for at least two reasons. First, they used 'normal' doses of riba. Second, they didn't take into consideration serum amounts and individualtity. Thirdly, and perhaps most relevant to this discussion, they looked at post 20-week dose redution effects (from standard quantities of riba), not at post 20-week effects from dosage increases above standard amounts (which would be in line with your particular case). Comparing with Shiffman's results with the pilot study seems to be apples and oranges.


Keep poppin' those little riba pills like they're Pez.


TnHepGuy

[TnHepGuy_]

Congratulations!!! That really is great to hear. And you are well on your way now to reaching the much coveted SVR. Please keep us posted as to how you continue to do.


Best to you.


TnHepGuy

[donAlfonso]

Been off the board a few days, Cuteus what great news to come back to. So cool!!

Rev, I was pretty sure you would have good bx result, glad you've confirmed it.  As I slog through my extended/full dose tx, I now feel confident that if nothing else, I will also drop a stage (or 2?!!)  Something good has to happen, as I am now totally numb and mindless, sort of like the guy in the novel/film "Being There".  BTW, I didn't laugh at the "washing the dishes" remark, been there, man.  I definitely won't finish tx w/o Procrit.  Had to stop in January when my RBC got to 48 (felt great to see that number, as that's what it used to be when in cycling form).  Started again last week as crit fell to
32 in 4 weeks.

Everyone, it's so helpful and inspiring to read your stories.  Usually if I say "Thanks for sharing," I'm kidding, but this time I mean it!

dA

[Califia]

Thanks so much for your comments.   Corroboration is a sweet thing!  This is all very left field and it's good to have, well, friends with a brain cell or two or three that I can share this with.   And according to your recent news, it looks like your liver's not too shabby, either.  ;)

[Oreos]

Thanks everyone for the kind thoughts : )

No, I don' think I'll go for another biopsy unless I need too.  Right now I want to enjoy life again!  Looking back on last year seems so surreal.  For those of you on treatment, there IS life afterwards and every day is a gift.

[cuteus]

I am grateful to have so many caring people in this forum sharing in the positive news of my negative reading so far.  This forum kept my sanity afloat even when things here got so insane at times. it was here that I learned I shoud push the tx as long as I could tolerate it, so that the first shot was my best and only. It is uplifting to see that even those who got angry with my words sometimes, can rejoice in the good news.

Califia, I hope your strategy works for you, truly. If you have extras at the end of tx(48 wks) use them! I had 7 vials left because I got 3 month refills at a time and my tx ended before the refills were used up. I donated them to a common friend in need. I wish I had more to give you.  I started disliking Kayser after my sister's stories of her encounters with them.

TNG, Majneni, Honey, dh bill, my most sincere appreciation. David; your persistance in educating us about tx and hcv was instrumental in my insistance to push tx further, TY.
Don alfonso; I can not see you not achieving svr, with the medical support behind you and your committment to see this virus gone for good.  Push tx as long as you can safely handle it. I think it is the key for many of us.
be well, everybody

[Califia]

Hey, thanks, this means so much to me, truly.   And don't worry 'bout me:  I've got a consult w/ the heavy hitters on 3/14 to pick their brains about tx extension.  Being armed with an outside letter from the bright lights in hepatology can't hurt, I figure.  We do what we have to do.... and of course, further suggestions always welcome!

[pegory]

I was a 1b and did pegasus and ribavirin for 48 weeks.  I'm SVR 1 year after completion.  Wishing you the best.

[Vosper]

Ten months post treatment and feeling like my old self only better, no more chronic fatigue, swollen joints. and post treatment sides have finally run their course.
Pegasys 180 mcg weekly, 1000mg ribavirin daily, full treatment all the way, plenty of sides mostly to do with falling wcb, my lowest hgb at 10 mnths 10.8, finished with hgb 11.2, neutrophils 1600.  No other medication other then the Pegasys.  My six month rna showed SVR...hooyaaaaa.  Undetected 12, 24, and 48 weeks.
I hope this helps.
All the BEST
Vee