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

[fashion345]

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