Back Again...

Hi Everyone,

I am not sure who is left from my era on the med-help site.  For those of you who don't know me, my previous nickname was newgirl and I recently completed 48 weeks of pegalated interfuron coupled with ribaviron.  I was clear at 12 weeks and remained clear through the end of treatment.  Sadly, I just got my 3 month post treatment pcr test back and the hepatitis has returned. I am heading to my doctor today to see what his plans are, though I was hoping that some of you could offer advice from your experiences.

Has anyone here experienced the same situation and what did the doctors suggest?  Do you know if going back on treatment is a waste of time and energy?  Please help, I am not sure that I can make it through a second time.

For those of you veterans to the site, I am so sorry that I disappeared for a while.  I needed to step away so that mentally, I could finish the treatment.  I hope that you understand.

Much Love,
Abby

[ellissg]

I think that depends on your level of fibrosis, and if your enzymes are still elevated, also the Viral Load. Personally, if your level of liver damage is slight, and your ALT isn't too high, I would hit the milk thistle and not treat.

[newgirl2]

My viral load is now at 270,000 and my enzymes are 16.  Thanks for the input!

[ellissg]

Have you ever had a biopsy? I think doing the treatment again isn't called for. I would wait for the next GOOD medicine to come out of clinical trials.

[Amerabrit]

I'm so sorry to read your sad news.
Good luck with your decision, I'm sure you'll make the right choice.

[MajNeni]

Wow, Abby, I'm really sorry about this.  You did respond, and I think Scott is on to something.  None of us know when the next radical improvement in Tx will be available; this plan improves the odds.  However, it's an even bigger fight than the first 48 weeks.  How were your side effects?  Also, you're young, and you have a lot of life ahead of you.
Can you tell at all (by how you were feeling in the past several months) when the relapse happened?  I realize that getting off tx lets you feel better and continue feeling better, and that might mask the relapse.  I had my 3-month post, and luckily I got good news; with my sides, I'm not sure my doc would let me go at it again.
I'll hold you in the Light as you make your decision and deal with this.
Maj Neni

[TnHepGuy_]

<b>newgirl2</b> - I'm very sorry to hear the news of your relapse. I hope that your doc can offer you some options.

Retreatment can definately work. For example, I know of a fellow who just went SVR after his third try. Whether or not there is a 'residual' gain from retreating so close to your previous tx would be a guess on my part. If I had to make a quick decision based upon limited data, I'd consider:

- how well I tolerated what I just went through

- what type of interferon would they want to put me on next?

- how long would I be on this round of tx (i.e. - would I be going 48 again or extending beyond?)

- what data could I dig up on retreatment - and the odds for responders who have breakthrough (as opposed to non-responders). My guess would be that the odds are distinctly better for those who have responded previous (of which you just have during the course of your tx).

- all the next tx's coming down the pike for the forseeable future will include interferon. The next likely addition to the mix appears to be Zadaxin. Which, if all goes well with final Phase III testing and submital - might receive FDA approval for use in two years or so.


Retreatment is not an easy decision - but one worth considering if your goal is to eradicate the virus from your system.



<b>willing & info gurus</b> - I'm sorry to say that I'm not familiar with the study Scott is refering to. Maybe you have some studies/information in the area of quick retreatment after relapse?

[TomWill]

First my stats:
I am a 53  year old Male
Genotype: 1a
Biopsy; Stage 1 Grade 0-1
Alt. Pretreatment: 89, During treatment 27, current 62
Beginning Viral load 10 mil
I had EVR at 6 weeks treatment and remained undetectable through out treatment.
Tested positive .at 4 weeks after treatment

I feel OK most sides are gone, but a few aches and pains remain.

I got my news of relapse after my 48 weeks of treatment about 3 months ago. I just had an appointment today with Dr. Godofsky  an infectious disease specialist here in Florida. He made a presentation at the 39Th EASL conference in Berlin Germany on

[Martee]

I will be ending treatment Memorial Day weekend. It'll be 53 shots for me and the riba of 600 mg. for the year.
  I am very sorry that you both relapsed. Everything was in your favor.
  It is also very depressing for me to read your posts for the obvious reasons. I had EVR at 7weeks of treatment, maybe sooner. I know because my PCR was done at the end of my 7th week. (so I am assuming 7 weeks)
   The one thing you both have in your favor is the fact that you have little liver damage. I am 49 yrs. old (48 when I started) a lb, and stage 3 grade 3 liver damage.
  Needless to say I am really scared to stop treatment and get tested.
   I wish you both luck and endurance to keep on fighting. I just hope I'll have the strength to do the same should my results not be favorable. :)

[DH Bill]

Abby, sorry to hear this. This kind of news is always a reality check for us.

Everyone, I do 40/48 this Thursday and this subject is on my mind (what's left of it)

My stats are similar to Tom Will except my vl was 315,000 before tx. I wonder what factor this has on relapse if any or is it just a **** shoot???????

My doc has me scheduled for a 3-week post test but doesn't want to hear from me til 6-month post (he is such a geat dude) I have had a rough week!!!!!!


worrywort bill

ps

Want to hear the highlight of my days lately??? Every day this new neighbor comes down the street in a "lookin good" bright red 1955 2-door chevy. I can hear him coming down the street, ya know, that special sound of a very hot, very fast small block chev engine...he's not going fast... just cruzin : ) : ) : )

[Hepmom]

This is actually newgirl - I am writing from my mom's nickname.  Maj, great to hear from you and I am so delighted that your results came back good!!!  I know that you really struggled, so the news is such a blessing.  

I just returned from my hepatologist who is going to biopsy to see what the damage is at this point.  He is really hesitant to put me back on treatment because I had such a hard time with it.  For those of you that don't know me, I am 25 years old and pretty petite. I lost about 20 pounds, had horrible insomnia and of course, fatigue.  I had debilitating bone aches and horrible rashes, as well as nausea and severe depression. I went on short term disability to get through the last 3 months.  My blood counts were pretty dangerously low, and I was on procrit for the final few months.  So, to say the least, he is a little worried about putting me back on the treatment.  He also mentioned that it is highly unlikely that I will clear the second round if I did not the first.

I will most likely seek a second opinion, just to be on the safe side.  Thank you all so much for your input and I would love to hear any more experiences.  I will keep you posted as to the results of the biopsy.  God bless you all!

[Tony-z]

I remmember you!!!
Sorry to hear the news. Please keep in touch on how your liver is and what you are going to do next.

                  God Bless,

                     TonyZ

[doll face]

I am a 40 year old female 1a was on pegintron and rebitron combo tx for 48 weeks relapsed after two months. I had a real hard time on tx the first time around but never thought twice about NOT retreating. I wanted to start right away while I was still used to the whole routine. Couldn't start for almost a year due to my moving and not finding a doctor here that I liked. Finally talked a doctor back home to treat me long distance ( I go home every two months for check ups) I am now on Pegasys and copegus combo I am on week 46 of 72. I cleared at 12 weeks this time around instead of the 24 it took last time.The sides are much easier this time also. I do have hypothyroidism due to the medications but that is not uncommon.

You have to decide what is best for you and give it your all whether it is retreatiing right away, or waiting for something new. For me there was no option I was going to try anything I could to clear this and if it doesn't work this time on extended tx then I will deal with that then, but I am not going to sit around and hope it goes away because it doesn't.

How was your first time on tx? In what condition is your liver?
What has your doctor reccommended for you? Best of luck in any decision you make. We will be here to back you either way.  Kim

[cindee]

Hey girl, The exact thing happened to me. I am 48 yr old f..geno type 1a...@ start of tx viral load was 6 million plus. I had an early viral response and was good thru tx. Tx was Very hard on me...any and all sx and all @ the same time. I had trouble w/ cbc's and low platelets. I didn't lose weight, I gained it! My liver doc didn't do post tx blood test until 6 months post. I knew something was wrong, because I didn't get to feeling better @ at 4 months post tx. so I talked him into a blood test. It came back poss.! So I went to Duke medical to see if I could do any trial studies there. Duke doctor told me to re-treat.

So as soon as we got out of the parking garage, I was on the cell phone and made an appointment w/ another doctor. He only treats hep patients. I see him on May 21st and I hope and pray he will re-treat me. I don't care for however long it takes. I've already signed a release form for him to get all of my past records. Scott, (who is here on the forum) told me he had read a study that if we heppers are treated 18 months instead of 12 the replase rate goes down to 17%. I read the info too. (THANKS AGAIN SCOTT)!  I want to feel healthy again and I want to kill the dragon inside of me....so here I go again!!!

I will pray for you to make the right choice for YOU. I wish you the best in your decission, and I'm sure you will make the choice which is right for you. Take care and let us know. I will be posting my info as soon as I hear. BTW my v.l. dropped to 1,930,000, so it did something good...I'm just so happy I was only a relapser and not a non-responder! You will be in my prayers, Sincerely much love, Cindee

[kennedge]

dang abby

i remember we started the trip about the sametime...and yea knowing you are northern california (SF) folk made ya even more like family then a distant relative...sure did miss ya towards the end of tx..a second opinion is a good idea and even aother pcr seeing how those things get screwed up sometime ..i don't remeber who it was but they went from positive to negative after tx in a couple of months...maybe the immune system finnaly getting reved up to take on the duty solo.....and as you know some people respond to the other name brand tx with less sides...so..wishing you the best.. keep us in mind as you know we are here

ken

[LvdByGod]

IS THIS THE INFO YOUR LOOKING FOR? it's the first thing i came across that sounded kinda like it...hope so...

newgirl, i remember you too, i'm so sorry this happened...with 50% odds i knew half of us would relaps...it just stinks...i do hope and pray for better tx in the future...i'm clear now but,i don't know what will happen with me either...no one does...but, i will retreat,unless something happens to prevent that, because i am a responder and i have bad damage...i hope the article below will be encouraging to you...i admit i only read the first part of it...so i hope it's good news...love ya, sandi  

p.s.you are in my prayers...along with all who relapsed or didn't respond...let's all pray for new meds and continued health until that day...until then though we gotta work with what's available...


http://www.hepatitisneighborhood.com/content/understanding_hepatitis/treating_hepatitisc_1414.aspx

[latrobe]

sad to hear your news....i know the hard times you've been through...i  dont post much, but i recall you and your mom posting here.  wish i had a magic bulle to help you...you're young and time is on your side.  take a dee breath and think about the next step.  love to you..and just survive.
-m

[Micro2]

Hello newgirl 2, I remember you and I am sorry about your report. I am still here (lurking mostly). I did 55 weeks on combo and dropped mt VL to 15 heptimax. I was moved to pegasys mono therapy for 4 months and my VL jumped to 2.7 million. My hepatologist recomended a second round of combo with increased ribavirin. I started right away because 4 months off of riba made me feel well enough to attack asap! I am 12 weeks into second tx and boy how easy it was to forget riba sides!! Any way, its both good and sad to hear from you. If your interested, I will get my 12 week VL results on Monday so I am on pins and needles (literally!)

[willing]

Hi Abby, good to hear from you, even if the news isn't so good. I'm another NorCal'er at about the same line in the parade as you (coming up on 4-months post).I believe the article Scott is referring to is <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14734149">Sou et al<.a>. It's not too applicable (mono therapy, only 24 weeks of orig tx) but it does seem to suggest sooner may be better than later. Personally, I'm a pretty strong believer in viral sequence: if your strain in interferon insensitive it doesn't matter how much ifn you throw at it. Doubledose's success (CONGRATS DD!) clearly show the meds can overcome a prior relapse - but the odds are pretty slim. My $0.02 would be to focus on stabilizing any fibrosis - possibly by maintenance dose ifn if the scarring is already far enough along - and, like Kennedge said, it's still worth doing that 6 month PCR. All the best.