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Avatar universal

retreaters

ive never seen any stats on this, but it seems that if you fail your first treatment, your numbers drop dramatically and you really do enter a kind of black hole. have any numbers ever been compiled to show this. it seems like ive only read of one person who got SVR in their second round. and we have several people around here with 2 to 6 rounds and no SVR.
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Avatar universal
I got the same way during my second, 18 month tx.  The shot made me feel better, energetic, and really good overall.  Toward the end of the week I would feel horrible.  It all reversed from the original patterns.

I think you are very close to undetected, and might explore the possibility of using a 'little' more Pegasys on each shot.  You are responding slowly, as did I, and you need to get undetected very quickly at this point, with no breakthroughs....so a little more 'horsepower' would be helpful.  Also, is there any possibility that you could do the 1,200 mg. Riba dose?  What is your weight?  Both steps would help insure that you get and stay undetected.  Of course, as you are aware, you will need a minimum of 72 weeks (or even a few more) to have decent odds of SVR.  Might as well go for it while you are so far along in the tx.  Any discussion of Procrit?  Can you use it safely being a TP?  

Best of luck!  My second tx at high doses, and for 18 months did the trick, and it still took me almost 19 weeks to get undetected.  I am SVR for almost 4 years now.  Keep pushing, week by week!

DoubleDose
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Avatar universal
From my experience, the body keeps changing due to interferon or else.
I treated 5 times, 2 times before transplant, not only didn't respond but the enzymes went thru the roof. After TP, I suddenly start responding. May be it was a new liver, may be new interferon (pegasys), but during the 3rd treatment the VL finally started going down and so were the enzymes. However, I was only on 400 mg of Riba; it was in 2003 and it seems that the DR should have known that this will never work and indeed I had a breakthrough after 8 months. Only right now I am on serious attempt with almost full riba 1000mg. So far, at week 20 VL is 80. Hopefully looking forward to UND at 24 and going for 72.

The body reaction to IFN and sx also change. I had violent fevers during first txs, now strangely I feel actually less fatigued and overall better immediately after IFN shot! 1-2 days before the shot are the worst.

And as others said, different interferons may work differently. My current Dr who is quite experienced with HCV, was thinking of switching me to infergen if I am not UND at 24.


So, keep trying! Best luck to you.  

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Avatar universal
double dose -that is one incredible war story. you need to write a longer version and post it on a new thread.

nygirl, thanks for the riba warning and other advice, any and all depression that i used to have has been lifting and now is totally gone. i feel real good about this remaining year of treatment. have a great day.
Helpful - 0
179856 tn?1333547362
Be careful not to take too much riba - it's going to backfire and zonk you into such bad anemia it might cause you to have to quit.  Ask me how I know? I started treatment very very thin at 120 and was taking about 1600 a day some days thinking it would "work better if there was more".  Uh no idiot tht I can be...Hemo tanked six points in just over a week - I kept fainting dead away...it was no fun and it took that much longer for the Epo to work.


I found 72 weeks to be ok.  By that time all the problems were long since ironed out and although I was tired...the sides were now tolerable because they weren't as drastic any longer and my body was sort of used to it.

My doctor said he didn't have enough Juice to really be able to prescribe me to do the 72 so he made me go to Dr. J (or any other real specialist I wanted - but I chose Dr. J. because of his reputation and the fact that he was so closely tied to the two studies).  I guess regular GIs have nightmares about malpractice.

My thyroid had already died from the interferon at about week 30 so I guess he didn't want any other parts to crust up and give out.

So - you might need to get a different doc as a 2nd opinion to go forward.

Either way - print out the information on BOTH of the studies so you have it with you.  Going armed with REAL data helps.

There is no reason you should not be allowed to continue until 72.

--------------------------------------------------------------------------------------

I just don't buy that stage 3 can be only 20% damage.  If stage 4 is cirhossis and at that stage the liver CANNOT regenerate it's tissue (but it CAN if it's NOT cirrhotic) then to me it comes as a fact that it's WAY WAY past 20%.  

My doc didn't act that way at all and said at stage 3 that I HAD to really start treating - stage 3 is pretty darn bad dude...there's not much worse.  
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Avatar universal
thats what my doctor told me 20% damage for a 3/3, what is your understanding
of that level of damage?

48 male
weight 160
1a  
1.6 mil iu viral
3/3
didnt hit UND until week 20

with the deck stacked that far against me ive got to pull a rabbit out of the hat.
72 with increased riba is the attack plan. i started today with 7 riba and i expect to be in a bad mood by tommorrow. thats why im asking all my questions now.
if i start posting while on increased riba i will probably get myself lynched!
Helpful - 0
179856 tn?1333547362
Being a 3/3 I can't see how anybody could look at it as if only 20% of your liver is messed up.  One more stage and you hit cirrhossis (I can never spell that). Plus it may take you 20 years to get to stage 3 but only a year or two to get a full stage over that - it's not a linear type thing....liver damage.

What were your PCR values so far?  I cannot remember ever reading them (but it's not shocking I still barely remember anything).

I decided for the 72 because I had a VL of 411 at week 4 and still a VL of 419 at week 12.  At week 24 I tested UND.

Using both the Berg and Sanchez Tapias studies I went to Dr. Ira Jacobson in NYC (who was lead investigator of Berg and HaltC) and he agreed that doing the 72 might benefit me greatly as the data showed much lower odds (20% lower) of me relapsing.

My insurance would NOT cover the 72 - saying it was "experimental" and thankfully I was on Intron and Riba and Comittment to Care covered all of my meds for free (and I do make a good living here in NY) - so if you run into that trouble...know they have a great patient assistance program.

I am stage 3 grade 2 and I did NOT want to find myself any higher than that...so that's pretty much why I went for it *but i would have if I had a lower test score value anyway).

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Avatar universal
Diagnosed by GP 6 months into sobriety when LFT's were not rebounding as expected.  Refered to Infectious Disease doctor that was only a couple of years out of med school who ran basic panels and biopsy to establish VL 72,000,000 Grade 1 Stage 4.

Being a Stage 4, I began treatment 1/21/06 w/o any discussion on meds in research or complications which might arise.  Hgb dropped from 13.5 to 11.5 in first week and a started doing more research on web to learn more.  Hgb dropped to 10.5 in second week, doc cut riba in half, and I began looking for new doctor as current one was unable to answer.  Doctor wanted to "throw in the towel" on third week as Hgb dropped to 9.8 but was willing to refer me to a different doctor since I resisted termination of treatment.

Transfered to a knowledgeable liver doctor who had done pioneering work in HCV on fifth week, began Procrit regimen to stablize Hgb, and tested VL at 2,200,000.

Hgb stabilized and increased slightly three weeks later, so upped the dosage with goal of raising Riba back to full initial treatment dosage.  PCR at week 12 was 1,800,000 which should rate of decline had decreased significantly during reduced Riba period.

For next 4 months slowly increased Procrit and Riba with Hgb hovering between 9.5 to 10.5 until Riba was actually increased to larger weight-base dosing recommendation with specialty medical monitoring clinic also observing results of Procrit adjustments.  Considered switching from Pegasys to PegIntron, but decided to remain with Pegasys.  VL had actually increased to 2,400,00 but decision was to shoot for a full 12 weeks on full treatment dosage.  

Continued to battle Hgb bounces between 8.8 and 10.5 until Procrit dosage had reached 100,000 U/SQ per week and further increase was considered too risky by doc, medical monitoring clinic, and pharmacist.  Also had a couple bouts of Neutropenia which required Neupogen to raise ANC back to safer levels.  Eventually switched to splitting dosage to multiple injections over the course of the week and Hgb stablized between 9.7 and 10.5.

Finally reached injecting Procrit 3 times and Hgb had risen to 11.5.  However,  PCR taken 10 months into treating after 12 weeks of full medication dosage showed VL to be 4,4000,000, so treatment was discontinued immediately due to continued rise in VL while on full treatment dosage of meds tagged me as a nonresponder.

Two months post tx showed all numbers had returned to normal, except for platelets which were still low, and AFP was a 6.

The 6 month CBC showed slight rise of AFP to high level of 10, was diagnosed type 2 diabetic two months prior, so further tests of Endocsopy and CT were ordered.  Glucose was normal going into treatment and further tests were not done during treatment in contrast to my requests to do so because of family pre-disposition to diabetes, father actual died from going into shock.

Endoscopy today showed level 1 varices, with no signs of any ruptures, so no banding required and CT is being done next tuesday.

That pretty much covers it to date.

I have of course been doing a lot more research, checking into trials (when information to do so has been available), obtained a second opinion from another reputable liver doctor who is still actively involved with many HCV related trials, and living life rather than following a life of living which is the main reasons why I have not been as frequent on this forum over past months.

Upper endo was first positive sign in a long time for me and I'm praying that CT will follow with another.
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Avatar universal
i hate to see that kind of carnage. you do carry your head high for someone
with that history. i would hope that you are very optomistic about the future.
can future interferon exposure make your diabetes worse?
when you say grade 1 stage 4, does that mean inflamation 1  and cirrhosis 4?
im a 3/3 and my doctor says about 20% of my liver is messed up. does that sound about right? if so what percent of liver damage would correspond to a 4?
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Avatar universal
I admire and am truly amazed with the struggles... fight... and Determination of those having to continue to battle this virus and wish each of you the best... Libby
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179856 tn?1333547362
Said: it doesnt appear to me that 1a high vl cirrhosis late responder (me) has much to gain in a repeated SOC.


It seems to me that if you look up the info on consensus interferon (Infergen) the odds are pretty decent that using that form of treatment can be very successful for those who are not successful the first time on regular interferon.

IT is a harder course of treatment (daily shots) but the outcome can be fantastic.

If for some reason I should relapse (PCR UND at 4 months post treatment of 72 weeks regular Intron/Riba combo) I would most likely go that way if I could not get in a trial as a non-responder.
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Avatar universal
I treated three times but the first two time were at suboptimal doses dues to rejection concerns(liver transplant 200). The first TX was 52 weeks & I didn't clear. The second time was 53 weeks & I cleared late and relapsed within 3 weeks. The third time I treated at full doses for 73 weeks and have been SVR since June 2004. Mike
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Avatar universal
im currently selling my doctor on the 72 death march with a target of 8 riba a day
for the remaining 40 or 50 weeks. if my body can stand it i beleive my odds are greatly boosted. i did post a question earlier about proven statistical performance of infergen over pegintron and sonic bandaid said they are virtually equal. they do have better or worse effects against certain strains but it is impossible to predict which one will work better. i asked this question because i considered rotating interferons in my current treatment, based on his answer i didnt see a benefit.
i know that many relapsers use infergen for later rounds but based on what sonic bandiad said i am not convinced that theres any real significant advantage.
by the way, glad to see you in your usual fine form running all around here helping everybody, thanks
Helpful - 0
Avatar universal
You are right!  The Infergen at 2x per day and 15 mcg., was the most brutal thing I have ever endured.  I only did the twice a day for two weeks but it did get me undetected in 2 weeks, and then I was able to stay undetected on 1x per day until the end of the 6 months of infergen portion of the tx.  Its a shame they did not prescribe Procrit for tx on my first go round.  I could have kept the Riba at full force, and probably have gone another few months as well.  I would likely have SVR'ed on my first round had Procrit been an option.

Still, the high dose PegIntron seemed pretty effective as well, on my 2nd tx, and ultimately did the trick.  The key is finding the interferon and dosage that will get you to undetected quickly enough (ideally before 12 wks. and if necessary before 20-26 weeks).  Then all you need to do is keep the dosages at full force, and keep the Riba maxed out for your weight.  Procrit can help in this area.

I won't go into too much detail about the two weeks on 30 mcg. of Infergen, but I can tell you that I had to hold onto the walls frequently to walk, felt like I was losing consciousness often, had every pain in the book, and shook like a leaf much of the time.  I tried to work for a few days during the two weeks.....changed my mind quickly!!!!  I did work running my business full time for the rest of the tx, at 15 mcg./day, and also during my second round for 18 months.  I frequently traveled, met executive level Corporate clients, etc..   Many times I wondered whether they could tell how completely 'out of it' I was feeling.  Climbing flights of stairs was the worst...or rushing for a plane with loads of baggage in tow!!!!!  I have many interesting memories, to say the least!

Best wishes to you.  You will succeed!

DoubleDose
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Avatar universal
I feel very well lately so I am waiting for the other shoe to drop any day now. Actually I am not pessimistic but rather cautiously pretty optimistic. I was really doing well one year post transplant but I wrecked my motorcycle and spent one month in the hospital and another 6 months in rehab so that was a setback. How I feel today has to be considered in light of the wreck so it's difficult sometimes to separate out the wreck from the transplant from any lingering SXs from the treatments. Nevertheless I feel good and extremely fortunate if a bit bewildered at where I am and how I got here. I'd say I have 80+% of my life back and that's good enough for me. Good luck to you, Mike
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Avatar universal
I treated twice.  First I  went for 15 months, starting out on intron, 3 x/ week and Ribavirin, moved to daily Intron when I did not get undetected quickly, and changed at month 9 to daily infergen.  I started the Infergen portion off with 2X per day, at 15 mcg. each injection.  I became undetected quickly, in two weeks, then immediately went to once a day infergen at 15 mcg., all the while using 1,200 mg. Ribavirin.  I had to cut the Riba in half shortly, due to dropping hemo counts, and finished at month 15 undetected (about 6 months total of being undetected after beginning the Infergen portion of the tx).  I promptly relapsed in 1 Month after finishing, due to the huge decrease in Ribavirin, and possibly also because I was only about 6 months at undetected during the Infergen period of tx.  

I waited for two years and did a second round using PegIntron (probably stronger than Pegasys from everything I have seen and read), and I used a dose approximately twice the standard for my weight.  I also used 1,200 mg. Riba, and had to use Procrit throughout most of my 18 month tx!!!  I became undetected about 19 weeks into tx, hence the 18 month extended period of tx.  I was a 1-B, and seemed to be a slower responder (not a non-responder).  

My doc had tons of experience running many different trials, and treating relapsers in private practice as well.  He guided me to an SVR, and knew all the obstacles to look out for.  I have been SVR for almost 4 Years now, and hope to remain so forever.

The tx'es were not without their pitfalls, since I have developed many post-tx problems, including fatigue, low libido, blood pressure and pre-diabetic issues, metabolic syndrome, some autoimmune issues similar to Lupus, erectile dysfunction, etc.  Still, I probably feel better in many ways than before the tx'es.  I am healthier overall, and seem to be getting a little better every year (I hope!!!).  

Keep working at the tx, and make sure you use a doctor that knows how to get the response curve that you need to obtain SVR.  I think choice of interferon can be important, as well as dosage, length of tx, and maintaining high Riba levels throughout.  Get undetected before 20 - 25 weeks into tx, and a good doc should be able to get you to SVR with excellent odds.  Get undetected before 12 weeks and you should be a shoe-in for SVR!

Good luck!!!

DoubleDose
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Avatar universal
I'm happy to hear you're feeling somewhat better. I wish you well. Mike
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Avatar universal
i was reading some old posts of yours the other day (i think you were treating at the time) and was wondering what the specifics were. very interesting and revealing info for people with a tough case. the 15 infergen twice a day, isnt that like 5 or 6 times overdose? that must have smashed you something fierce!
kudos to you as another invincible Warrior God.
i am afraid to try the high interferon doses at this stage, they seem to exract a high price for success. im hoping increased riba alone will get me out with a lot less long term risk. glad to see your still hanging around popping in and helping us newbies out.
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Avatar universal
i knew you SVR d after a transplant (thats got to be pretty a hairy ordeal by itself) but didnt know you paid so dearly for the SVR. i dont recall you complaining much, have you been able to defeat fatigue and pain etc?
if youve gotten 70% of your life back that seems like a minor miracle to me.
you definately go down in my book as a Warrior God. by the way thanks for all the help youve given me personally, im feeling real optomistic about getting out of jail on this first round with 72 and a high riba dose plan. have a great day!
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Avatar universal
thats encouraging news somewhat, i wish we had some real statistics to look at.
i should know your treatment history but forgot. tell me what it is if you get some extra time.
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Avatar universal
so youre one of the warrior gods? how many rounds have you been through?
ive already decided that if i dont get out this time, i will maintenance dose
until FDA releases. it doesnt appear to me that 1a high vl cirrhosis late responder (me) has much to gain in a repeated SOC. but i have no hard numbers to prove this.
  
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Avatar universal
I know of one person who treated 5 times to SVR, of one who is now on third tx and finally UND, and one other who recently confided that they treated 7 times before attaining SVR.

What I've been told is that the probability of succes in retreating is different if one was able to reach UND than for those, self included, who did not.  I was also told that the chance of clearing for nonresponders is less than 1% on successive treatments.  Of course any chance is better than none for someone who is infected.

However, it seems that for some reason insurances do not view it in the same manner.  I guess if they actually had to cover a nonresponders re-treatment that it might mean taking fewer people on the meetings to the Caribbean, or less open bars or fewer rounds of golf when their there, and heavens knows that we can't have the heads of the medical insurance companies enduring such suffering..
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Avatar universal
I am a GT 2 that relapsed after 24 weeks of tx. Right after the 6 month pcr I started tx for 48 weeks. Clear at 4 22 48 post tx clear at 20 and 26 weeks.it can a does happen. But you are right no reall start on odds.

good luck

rock


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214582 tn?1194026839
I think I got SVR second round... I never went for the year out test yet... but my 4 mo post pcr was still undetectable...

so I take that as a pretty good sign being as after the first round I had relapsed by 12 weeks post... & it came back with a vengeance too... I should know for sure fairly soon.. just gotta drag my butt down there & do it.... only dragging my feet because I have to pay full price out of pocket!
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96938 tn?1189799858
Human optimism and the triumph of hope over experience.  Sort of like a second marriage.
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