Just found out I relapsed,, soooo upset,, help!!

Help,,, just found out I relapsed at 1300 pcr,,,sooooooooooo upset,,, since I have only been off drugs 1 month,, they want to start me on interfergen,,, what should I expect,, shots daily,, worse sx???

[Trinity4]

Sorry to hear about your relapse.  If your liver damage is not advanced you might want to consider waiting for the protease inhibitors which are expected to be release sometime next year.

Did you know you only have around a 10-15 percent chance of SVR with Infergen?  You really may want to weigh in on all your options.  

Infergen is a tough treatment

Trinity

[fashion345]

I know,,, been reading about this,, my dr. says the time to do is now since the other drugs are still in my system.  thought I could try for a month and see how I do,,, even though I was just starting to get my energy back.  My daughter is getting married 5/14/10 and my only concern is doing this and having a harder time recovering before the wedding showers begin in March.  So confused about what to do!  :(  Can't stop crying!!

[FlGuy]

Sorry to hear it.  I see you are G2b stage 3/4.  Before you committ to anything you might consider how the new stuff trials have been with G2.  Not great with G3 but maybe different with that "easy" geno of your.  In addition, wait another month or so and get another pcr, just in case...

[Bill1954]

Help us out here, Fashion; you’re genotype 2 with stage 3-4 fibrosis, if I recall? Maybe you could post this info in your profile so others can look in and comment; I imagine you’ll be getting a bit of a response.

So sorry to hear of your relapse; has another PCR been ordered for confirmation? It’s unlikely there’s error in the PCR results, but you probably ought to check it anyway.

I agree with Trinity; the odds aren’t too good for Infergen; but of course, some folks do clear using it. After my relapse, I was expecting Infergen therapy; but my new hepatologist didn’t think much of it. He offered to prescribe it, but preferred to change from Pegasys to Pegintron, and go aggressively from there.

You did respond; that at least suggests another course of therapy is a possibility; those that are full null responders don’t really share that option with you.

Fill in the details; others will likely join in to the discussion shortly.

Sorry again to hear the news,

--Bill

[FlGuy]

Deal with the wedding stuff and forget HCV for a while.  Recover, re-charge and enjoy stuff for a while.

[fashion345]

Thank you everyone.  Yes, Bill, I am gt 2b and stage 3/4 from photos that I had from a previous surgery, to a hepatologist at the Plager liver inst, at UCLA and have not had a liver biopsy.

I don't know what to do, my dr. has had success with patients like myself and that is why he is suggesting I do this now.

Should I have a liver biopsy 1st?  

[spectda]

I believe fashion is g2 stage 4.

I am so sorry to hear your news. I can only imagine how difficult this is for you. although the odds are improving for all of us, it's such a crap shoot and we have to put in so much time into treatment. Hopefully the treatment at least gave your liver a rest for a while.

It's a tough call at stage 4, but it seems your odds with telaprevir will be much greater and it will hopefully be available around the time or soon after your daughter's wedding. I know there is no guarantee that it will be approved, but my guess is that it will.

Waiting at stage 4 usually seems ill advised, but then again how much will your liver damage change in the next half a year.

Take care of yourself,
Dave

[evangelin]

I'm feeling so bad for you right now.  I don't know what you should do but I am feeling your pain.
Meant as a small bit of encouragement, My husband is a 3 x non-responder and we really wish he was a relapser because it carries so much more hope in comparison.  Your chances of getting rid of this virus are much better than those that never can even get to non-detectable.  It puts you in a better group.  You are very likely going to be free of this virus one way or another, whether by Infergen or a protease inhibitor.  
My husband has taken lots of daily Infergen and, for him, it wasn't really any worse. It just kind of spreads the yuck days out more evenly, instead of a big hit that starts to improve after a few days with the peg. shots.   It does tend to get you pretty worn down over a long period of time but that varies so much from person to person. Assuming you became non-detectable again soon, I would wonder how long your Dr. would want you to remain on Infergen?
There are some really good people on here that can help you order a very sensitive test which I would certainly want if I were you and you were restarting Infergen.  You would really want to know when you get non detected and it has to be a sensitive test to know for sure.  Bali is a good one to ask.  Trinity and others likely know also.  I think it is sensitive to less than 5 but unfortunately, my husband never came close enough for me to worry about it.  
You have every reason to have hope to be virus free eventually.  
Sending you a hug and a prayer ,
Ev

[Bill1954]

Also, make sure to review a hard copy of the results. We had someone in here recently (Agatha) who was genotype 2 and purportedly relapsed. She fretted over it for a year before she found out her doctor had read the wrong report; he’d used her baseline labs to report her relapse. Simple human error caused her a full year of grief.

I sometimes wonder if genotype 2 relapse involves mixed genotype infection; although at this point, I imagine you’ll be managing this as aggressively as any genotype 1 infection so it might be a moot point.

Do ask for retest just in case, though; as you know GT-2 relapse occurs infrequently.

And I agree with FlGuy; give it a rest and let your body get caught up. With stage 3-4, there’s obviously some implied urgency, but not next-month type hurry.

--Bill

[spectda]

I didn't realize you hadn't had a biopsy when you posted many moons ago that you were stage 4. I would definitely have one done asap so you truly know the extent of your damage. It's difficult to make a decision without a true diagnosis of your condition.

[fashion345]

I know I can wait,,, just don't know what to do.  Will take some time and regroup.

How do most people respond with intergen??

[Bill1954]

I don’t know about biopsy; it sounds like you’re motivated to treat again regardless of condition, correct? If you think you might postpone/delay therapy, then a biopsy might be a good idea. If your concern is crossing over into frank cirrhosis, often simple labs can alert a good doctor if the patient is becoming cirrhotic. Do you know what your platelets look like? Has your doctor ever suggested that cirrhosis might be an issue or that you might be transitional to cirrhosis right now?

Bill

[Trinity4]

I'd want a biopsy to confirm the hepatologist's birds eye view even though it's only a small sample of a very limited part of the liver.  I had another biopsy recently and the sole reason is so I can make an informed decision on how and when I should move forward.

I know all to well how badly relapse s-u-c-k-s.  Things will get better, give yourself some time to sort it all out.  If you go with Infergen soon there is no way given what your body has been through that you'll be at the top of your game for the big event.

Trinity

[Trinity4]

As info, my post 3 month PCR was around 137,000 IU/mL and started out over a million.
At 1 year post my viral load was 400,000 IU/mL   Not a big difference there so I'm one of those that the viral load didn't roar back with a vengeance.  I suspect if I had done a 1 month PCR I would have been right around where you are now and I'm a stage 3/4 with normal liver enzymes as of this October.  Go figure!

Trinity

[FlGuy]

I'm going to be in over my head very quickly on this subject.  But, it was my understanding that the "core" sampling of the biopsy shows the condition and function of the liver below the surface of which a photo can't capture.  

[GSDgirl]

I am so sorry that you relapsed.  This great bunch of people have a whole lot more knowledge than I do, just wanted to wish you Luck with however you proceed

Denise

[paen53]

There is another member here, her name is sunshines76 and I believe she was switched to Infergen at some point and may be able to shed some light on that decision as well.

I'm sorry to hear about the relapse and hope you will soon SVR with either the Infergen or the new PI's.

Pam

[fashion345]

Thank you all so much.  I am trying to make some decisions whether to do the infergen, biopsy, or just wait.  If the Dr. would call me back it would help.  Not sure what I would do if you all were not out there

[nygirl7]

A good friend of ours who used to post here DebC treated successfully with Infergen.  It was a terrible treatment and she did 72 whole weeks of daily shots but she did get to SVR.  For some Infergen is impossible to do, it's too hard but then I have read other people who actually thought it was way easier than SOC.

I'm sorry fashion it totally totally ***** but the fact that you did respond is the thing you should hold onto right now.  It just absolutely must have taken the wind out of you but hang in there.....get retested just in case and I would have a new biopsy done too.  Perhaps while you were treating your liver had a chance to recharge and it might have regressed a stage - in that case your options will be totally different.

Dont give up hope.

[fashion345]

Thank you,,, have not stopped crying for 2 hours.  The thing that is soooo frustrating is ,, just when you feel like you may feel normal again and start to get back to things,, you get hit with this...like a kick in the stomach.
I don't know what to do,,, dr. thinks I should do the inerfegen now,, still have 100% coverage on my insurance to order the drugs until 12/31.  Could try it and if grueling, stop.  I know this,, end of Feb, I feel bad on it, I will stop.  Have to be on my toes for wedding showers and wedding for my daughter!  I am at work, have not done a thing since I found out... all about the pity party,,, such a disappointment.  
Not much one can do, except move on from here!

[copyman]

Sorry for this heartbreaking news.

I agree with some of the others that with the odds I would NOT use Infergen.  This is perhaps the worst poison you could put in your body.  For what a 10% chance of SVR! No way.

Stop regroup. Enjoy your daughters wedding then right around that time look at treating with the new drugs.

Hang in there.

[fretboard]

Deal with the wedding stuff and forget HCV for a while.  Recover, re-charge and enjoy stuff for a while.
______________________________________________________________________
I am really sorry to hear about your relapse!  That said I agree with FlGuy and other's here on the forum.  Take care of yourself right now and take it easy.  The new drugs are supposed to be available very soon and since you actually did respond to tx you may just need a PI to move you over the finish line.  Your doctor is right about being a good time but, infergen?  No way, I think you can do better than that with a PI=Telaprevir.  good luck and God Bless!!  

[nygirl7]

Honestly when it looked like I was not going to succeed I had planned on doing the Infergen.  I didn't want to but as someone who didn't get to UND till right before 24 somewhere I figured it would be necessary. My first EOT pcr came back positive (60) but then the rest came back UND. I can relate even though technically I was not a relapse it seemed like I was surely going to be one.

first you have to get a handle on this - it's a HUGE shock and disappointment.  Something would be wrong with you if you were not responding this way, you have to know that in your heart.

Since you have the coverage you could order the meds, get the PCR and see where the cards are.  By that time you will be acclimated to what is going on - and it might not be as horrible as you think by then.

I really wish there was something I could do to change the situation for you but.....hopefully your liver has improved and perhaps you dont even need to treat right now and then you can wait for the new meds that will be available to the geno2s maybe. Look every day how they are coming out with new things.

There are plenty of geno2s on here who relapsed and then treated again successfully.   I know you dont want to, I sure get that, but you have to remember them and realize that you can do this. I'm so sorry my heart is just breaking for you.

[can-do-man]

'The thing that is soooo frustrating is ,, just when you feel like you may feel normal again and start to get back to things,, you get hit with this...like a kick in the stomach.'


That is sooo true, really sorry about this........... Wishing you the best, things will get better.

cando

[fashion345]

Thank you everyone!  Could not do this without all of you.  Still waiting on the dr.,, want to discuss this.  
Think I will take NYgirl's advice and order the drugs, and then decide what to do.

[carol411]

Oh, I am so sorry.  I understand your reaction, it is sooo not fair.  I can't offer any tx advice because I don't know enough, but whatever you decide to do does not have to be decided immediately.  As you said, you have just been kicked in the stomach.  Once you have absorbed the shock you will be able to make a better decision.  My heart is breaking for you too.  

[Bill1954]

A difficult aspect with genotype 2 relapse is that it rarely happens, and the signposts are scarce when it comes time to retreat. I’d imagine your doctor is forced to fly by the seat of his pants a bit; there won’t be very thick pile of stats and supporting studies.

Rethinking this, Infergen might be something to consider. Almost everyone that uses it has relapsed or suffered other types of non-response, so as a group, Infergen numbers won’t look good by design. Plus (and I haven’t looked yet), I bet most of their data is based on genotype 1. When your doctor does call, maybe you could ask him if there are studies that have pulled GT-2 out of the fray, and see if there are any SVR figures for that genotype.

I’m aware of at least one gal in here right now that’s using Infergen and isn’t having any difficulties with it. She’s GT-1 and wasn’t reporting problems or side effects with her Pegintron either; other than a slow response, of course. I’ve heard other anecdotal reports that said it was comparable to either Pegasys or Pegintron; but by and large, this isn’t the norm.

Take care of yourself,

--Bill

[fashion345]

Thanks Bill!  Will ask the dr.

[babs824]

so very saddened by your news. must be a giant kick. i do not have sufficient info to advise. your daughters wedding is a special day so i hope by then you have some resolution so you can move forward. i too am geno 2b and am hopeful waiting for week 12 results. i no longer take anything for granted and your story makes that point more potent. stay close to us here. at least you have folks who really get it. sending a warm hug, babs

[evangelin]

For what it is worth, my husband had worse side effects from Peg- intron than he did Daily Infergen.
Ev

[fashion345]

Thank you babs824.. really appreciate your kind words.

evangelin,,, also thank you,,, knowing about your husbands reaction is helpful.
Did he acheive svr with the infergen?

[meakea]

Fashion...  I'm very sorry that you relapsed...very sorry.  I wish you the best going forward.

[R Glass]

I am so sorry to read this. I wish I had some magical words that would ease your sorrow.

[evangelin]

No, he never even made it to non-detectible even after 15 months on TX.  See how much better off than that you are?  Sometimes it actually helps to know that things could be much worse.  It puts things in perspective.  You can't go by whether or not Joe SVR'd because he is unlike you in that he never has been able to get to a nondetectable status. You do not have that problem so that is why your chances are still so good for beating the virus.
Ev

[fashion345]

Thank you for helping me remain optimistic during a very down time.
I am usually Miss positive and will need a few days to regroup.
Still trying to decide if I should go with drs. advice and start the inerfergen right away and take advantage of the drugs still in my system?

[Trinity4]

Just so you know it's been about a month since your last injection of interferon and that drug has all but left your body.  Ribavirin does have a longer half life but it is ineffective without interferon. It takes around 3-6 months for the ribavirin to leave the system but interferon is usually gone within 3 to 4 weeks.  Your immune system may still be in high alert at this point but for the most part it is surpressing the virus on it's own.  

Trinity

[fashion345]

Thanks for that important info.  good to know.

[foofighter]

Absolutely rotten news. I am so sorry. Give your head/heart a couple of days to deal with the shock. Info and support to help you with Plan B is here.

Foo

[mk_]

My heart goes out to you,. it must be really frustrating. You will succeed next time; 2b shouldn't be too stubborn. Please hang in there. I am still waiting for my first 3 months PCR crossing my fingers. Take good care of your self. -mk

[fashion345]

Thank you all.

[Magnum]

I sympathize with you, but it’s nowhere near the end of the world. Susan and I went through multiple treatment attempts, and although tough for you to swallow this disappointment now, the end result will be worth it.

Rest, relax in the Bahamas for a month and find a suntanned lifeguard to show you around. Travel to Beverly Hills and get a facial and a massage before going to Disneyland. Go to Vegas and gamble. Hop on a plane and go to Venice and Florence. See the pyramids along the Nile. Live life to its fullest, then start with he Protease Inhibitors and destroy the invader once and for all. No big deal...

Magnum

[sunshines76]

I agree with most of the comments above. Yet, on another side, I also agree with your doc's suggestion to start sooner as the other drugs are still in your system. Your vl is still pretty low now, so your doc wants to kill the virus as soon as possible with infergen. We all know the lower the vl at the start of tx, the better your chances are. I was switched from pegasys to infergen without any break for that same reason. 18 weeks on pegasys, I took my last weekly pegasys shot on Saturday, and then I took my first daily infergen shot the following Tuesday, while I suspect Pegasys from my last injection was still doing its work in my body. I guess that could explain why my first 3-4 days (nights) on infergen was pretty miserable.

As for the comments about only 10-15% chance with infergen... It is true. And my doc kept me thinking about this such a small 10-15% chance till the very end of tx. When I got my first UND after being 4 weeks on infergen, I was told that my chances were still between 10-15%. I stayed UND througout the tx, and only at the very end of tx my doc smiled and said that he would put me now in a 90% chance for SVR, since I responded to infergen so well. I guess, if you are not UND by week 4-5 on infergen, then stop and wait for new PIs. But if you get to UND on time and stay UND - your chances are much better.

I wrote more about my personal experience with infergen, check your inbox. Thank you :)

[Trish77]

I'm very sorry about your relapse, so upsetting.

I can see the merit for at least trying with the infergen.  You did respond and your viral load is very low at this particular point. You have a ways to go until your daughter's wedding and you can see how you manage with it.  Your doctor also seems to have some experience with using infergen, he's not a newbie with this.  Since your viral load is so low you can see when you go UND with it as Sunshine is suggesting.  Since the meds are free right now, I'd think order them, start infergen, see when you go UND, see how you tolerate it and take it a step at a time.  If you ARE going to do it, I wouldn't wait too much longer, I'd be pumping those drugs back in there and get after that virus. That's my unlearned opinion.

[Trish77]

Here is some information on response rates to treatment with infergen, some actual data.  

It seems the best responses are for those who have responded to INF/Riba treatment previously - which you did in going UND at 7 weeks in - and for those with lower fibrosis - F0-F3.  That last one may or may not apply to you. Depends...you've been on 48 weeks of treatment and there is some degree of reversal of fibrosis for many people after treatment.  Might be worth doing that biopsy just to get an accurate picture of where you are now.  Raises chances of success to between 10 and 31% at the highest end.

Patients demonstrating partial response (>2-log drop) with previous treatment and low fibrosis scores F0-F3 had SVRs of 10.7% and 31.6% for the 9 mcg and 15 mcg arms

http://www.allofdrugtest.com/infergen-with-ribavirin-in-hepatitis-c-treatment-failures.html

The best SVR rates were seen in:
Patients achieving the greatest reduction in baseline viral load with peg-IFN/RBV therapy, especially in patients demonstrating > 1-log drop with initial therapy
Patients with fibrosis scores of F0 to F3 at baseline demonstrated SVRs of 7.8% in the 9 mcg arm and 13.1% in the 15 mcg arm
Patients maintaining full dose of INFERGEN/RBV therapy had SVRs of 7% and 17% for the 9 mcg and 15 mcg arms respectively
Patients demonstrating partial response (>2-log drop) with previous treatment and low fibrosis scores F0-F3 had SVRs of 10.7% and 31.6% for the 9 mcg and 15 mcg arms

Infergen treatment is apparently best for those with less fibrosis or non-cirrhosis and those who responded to previous treatment within certain parameters and you did.

http://www.ncbi.nlm.nih.gov/pubmed/19291790?dopt=Abstract

Because you'll be treating with ribavirin again with the infergen, that is still in your system and perhaps that's what your doctor was referring to - not the interferon.

The other factors that stand out to me is that you did 48 weeks of treatment, went UND at 7 weeks and yet relapsed.  So...just maybe...infergen is the way to go for you.  And if infergen does not work, then you DO have the PI's still in the arsenal.  

A tough decision regardless.  Good luck with this.

Trish

[spectda]

I've been thinking of you and what you must be going through to adjust to this new challenge and having to make new decisions about treatment after all the time you put into it already.

Although i have limited experience regarding treatment, I have been wondering if your relapse might have more to do with your ribavirin dose then your interferon choice. You didn't seem to have that tough a time getting to und, although a week four und with g2 would have been better, week 7 is still a good response.

I am not saying you shouldn't try the infergen, just thinking that also hitting it hard with riba might increase your chance of svr. I don't know how it effects svr late in treatment, or soon after treatment. I just thought it was worth mentioning.  

Perhaps I am incorrect, but I always had the impression that riba plays a huge role in preventing relapse. If anemia is truly and indication of good riba absorption and potential for svr, then it seems that you had a slow response to the riba. At 4 weeks tx you reported hgb of 13.7, and at 29 weeks 11 hgb. What was your starting hgb?

Where you prescribed weight based riba, or was it 800 mg which I think they often use for treating g2 regardless of weight?

There are people on this forum that relapsed and used much higher dosages of riba during their next tx and were successful. Bill posted a small study where they had very high success rates with very high dose riba.

Anyway, i just thought I would mention this if it hasn't already crossed your mind and you haven't already discussed it with your doctor

Take care and you know we are all thinking of you,
- Dave

[Bill1954]

Spectda likely was referring to the high ribavirin study by Lindahl, ’05; I’ll caption and link the abstract here for reference, although I believe it was specific to GT-1. Those ten Swedes must have been feeling poorly for a year, huh?

I completely agree that properly dosed ribavirin is associated with SVR; it wouldn’t take much to review your lab history and see if you’d tolerate higher mg/kg/day ratio in the future:

http://www.ncbi.nlm.nih.gov/pubmed/15660393

“Improved treatment regimens for patients with chronic hepatitis C, genotype 1 and high viral load are needed. Increasing the dose of ribavirin has increased the response rate, but experience with doses of more than 1,200 mg/day is limited. The aim of this study was to investigate the safety and tolerance to treatment with a high and individualized dose of ribavirin in combination with peginterferon. Ten patients with chronic hepatitis C, genotype 1 and high viral load were treated with peginterferon alfa-2a and ribavirin for 48 weeks in a prospective trial. The initial ribavirin dose was individualized and calculated from a pharmacokinetic formula based mainly on renal function. Ribavirin plasma concentrations were monitored, and the dose was adjusted to reach the target concentration. Hemoglobin was monitored, and patients were treated with erythropoietin and blood transfusions when indicated. After dose adjustments, the mean dose of ribavirin was 2,540 mg/day (range, 1,600-3,600) at week 24. The main side effect was anemia, which was controlled with erythropoietin. Two patients required blood transfusions. One patient was withdrawn at week 24 because of a lack of viral response, and one patient at week 39 because of side effects, primarily interferon associated. At follow-up (>or=24 weeks posttreatment), nine of ten patients had undetectable HCV RNA and thus were cured by standard definitions. In conclusion, a high dose of ribavirin according to an individualized schedule is feasible but associated with more frequent and serious side effects such as anemia. The viral response merits further evaluation.”

Good luck, Fashion—

--Bill

[jusjames]

i too am very sorry to read this terrible news ...

[Trish77]

I would agree that it would be worthwhile looking at the ribavirin dosage in conjunction with infergen if you go this route.  Your hgb never seemed to get overly low and indeed went up at one point, correct?  Certainly worth discussing with your doctor, I think.

[mikesimon]

Factors Affecting Efficacy in Patients with Genotype 2 Chronic Hepatitis C Treated by Pegylated Interferon Alpha-2b and Ribavirin: Reducing Drug Doses has No Impact on Rapid and Sustained Virological Responses

Posted: 07/19/2010; J Viral Hepat. 2010

"....Multivariate logistic-regression analysis showed that only platelet counts [odds ratio (OR), 1.68; confidence interval (CI), 1.002–1.139] and RVR (OR, 11.251; CI, 5.184–24.419) were independently associated with SVR, with no correlation being found for the mean dose of Peg-IFN and ribavirin for RVR and SVR. Furthermore, in the stratification analysis of the timing of viral clearance, neither mean dose of Peg-IFN (P = 0.795) nor ribavirin (P = 0.649) affected SVR in each group. Among the patients with RVR, the lowest dose group of Peg-IFN (0.77 ± 0.10 μg/kg/week) and ribavirin (6.9 ± 0.90 mg/kg/day) showed 100% and 94% of SVR. Hence, RVR served as an important treatment predictor, and drug exposure had no impact on both SVR and RVR in combination therapy for genotype 2 patients....."

[mikesimon]

I neglected to cite the source for the previous quote.

http://www.medscape.com/viewarticle/724836

Mike

[Willy50]

This is somewhat in response to Bills post that was in response to spectda's.....

Some recent findings about predosing RBV

http://www.hivandhepatitis.com/2010_conference/aasld/docs/1214_2010_a.html

Keep in mind, this is not the high dosing, double dosing, extended dosing.

I hadn't seen people post this or talk about it and thought that this might be as good a place as any to add it in, although it may also deserve it's own thread.

Willy

[desrt]

"... Those ten Swedes must have been feeling poorly for a year, huh?"

With no follow up except the 24 week post-tx PCR we don't know how many of those patients actually survived the tx or were left with permanent health problems. "The operation was a success, but......"
Not everyone has your incredible tolerance to riba.

[Bali05]

thanks for that link Willy.
I agree it really deserves its own thread.
the data almost exactly reflects my personal experience.

[spectda]

"Keep in mind, this is not the high dosing, double dosing, extended dosing."

I agree, I would however tend to believe that it is about response based dosing. That is why I mentioned it in the first place.


At the same time the information Mike posted certainly doesn't make a strong argument for increased riba in G2 tx.

"Factors Affecting Efficacy in Patients with Genotype 2 Chronic Hepatitis C Treated by Pegylated Interferon Alpha-2b and Ribavirin: Reducing Drug Doses has No Impact on Rapid and Sustained Virological Responses"

[mikesimon]

I think willy and ball are right - it should be in its own thread because it says nothing about G2s and what it does say isn't too clear to me anyway. It is a rather brief discussion and hopefully when we see it fleshed out we will know more.

Mike

[willing]

sorry to hear the grim news. I expect some time to adapt and adjust is probably the best strategy. While making plans for going forward, gathering more information seems crucial. (1) Figure out how much liver time you have left. Diagnosing staging by photograph seems very suspect. I got some great photos of my liver from my last laparoscopic bx. The surgeon was quite proud of his shots but the hepas were not remotely interested. Short of gross anatomical distortion on the surface there's not much information. A bx will collect a cell by cell snapshot of inflammation and fibrosis,  A Fibroscan will assess the overall stiffness of a  much larger area. A bx is not usually recommended for g2s because of the high success rate but for you it seems a key item of information as it determines how long you can wait. (2) Investigate likely causes of failure. Three of the usual suspects are inadequate rbv, ferritin and IR. If you have enough VL data from early tx you should be able to track how ifn responsive you were. Often, fixing one the logjams above can yield dramatic improvement for the easier genotypes. (3) check out new tx options - eg bms790052 is about to recruit for a g2/g3 trial. There are some much better options than infergen on the horizon - but first you'll need to know how much liver time is left.
All the best.

[bostoncream]

for relapsers with stage 1-3 disease and good interferon sensitivity (12 week svr)  the svr rate is much higher than reported above for nonresponders (10 -15%)  as high as 35 - 40 % for infergen retreatment  also the new therapy wont be available for everybody they have already established some eligibilty requirements and exclusion tests like il28b test and are working on othersive done peg intron and pegasys now im on infergen  i cant really tell any difference in the sides -and all have been minor for me

[paen53]

Do know of any of the eligibility requirements that they've established? And how exclusive is the il28B test? Only CC's? This is all news to me.......Did you get this news from your Dr.?

[bostoncream]

the cc type clears about 80% of the time on soc (peg / riba)  this is better than triple therapy offers also as i understand it there will be very close monitoring of patients on triple therapy and if things start to go bad they will stop treatment to reasses the case also genotype 3 is an unlikely candidate

[Bill1954]

Here’s a link to Labcorp’s IL28B test if you’re interested:

http://people.genome.duke.edu/~dg48/L8464-0710-Service-Announcement-FINAL.pdf

[Trish77]

"for relapsers with stage 1-3 disease and good interferon sensitivity (12 week svr)  the svr rate is much higher than reported above for nonresponders (10 -15%)  as high as 35 - 40 % for infergen retreatment "

Some of the docs I looked at mentioned the stats you're quoting but I didn't find any studies in co-relation to that?  Best I found is the one I posted where it was as high as 31% for F0-F3 and demonstrated response to SOC in first 12 weeks.  Do you have any links to supporting data?  I'd really appreciate that.

[fashion345]

Thank you for caring and feedback.  Right now, I most likely will begin the grueling shots every day of infergen.  Had a great day today celebrating a girlfriends bday.  So nice to have some relief.  I have decided if the sx are too difficult on the infergen,, or more difficult then the interferon/riba 48 wk tx I just completed,,, I will stop.
At that point I will wait until either new drugs are out or atleast until the Fall to start again. Need to be at my best for the wedding.

[paen53]

I applaud your call on this. By week 4, you will know whether or not it is working and can stop and gather your strength for the upcoming wedding if it isn't. If you're UND, you'll know that the likelihood of SVR is so much greater. I can't imagine it otherwise -  you did respond to SOC and have a very low VL to start and now the big gun should blow them to smithereens.

Did your Dr. say how long you'd be on the Infergen? Is there a chance you can run another PCR just to be sure you've relapsed before you jump into it again?

Hang in there, Fashion!

[Mary4now]

Wishing you good luck and a strong body to get through this.

[pcds]

I would get a second opinion about what to do from here.  I sent you a message with the name of the mayo doc that did the trials in Scottsdale, who I will be seeing in March and some other resources.  I was upset when I stopped tx after 13 weeks still detected. Wasted abuse to my body, I can't imagine how difficult this is.  Reading the posts, it sounds like your plan is good, get the meds.  Part of me thinks, you've come this far  why not give it a go?  Part of me hates this treatment that soon will be out of date so why trust in the poor results so many can have with it.  It's a tough decision you have to make.  Remember in the end you will get rid of this virus.  And so will I.  I must tell you I am currently enjoying feeling normal.  It's nice to have a "breather" before dropping into tx again this summer.
Judy

[Trish77]

Good luck with this.  Always a tough decision, situations like this.  Wondering what your decision is on whether you will get a biopsy or not?

Trish

[fashion345]

Thank you all again for your wonderful advice and feedback.  I will be seeing my dr. on Tuesday and will know more.  I believe he stated that he would do a liver biopsy if I did not treat now.  I am going to try the infergen and if I clear at 4 wks, will decide if I can tolerate going forward.
I am sure anyone that relapsed, questions,,"What did I do to cause the relapse" which is what I am doing.  Obviously a silly point as the virus is so strong, that it can reoccur with anyone.  Can't help but wonder.