Should I Wait For Liver Biopsy or Treat Anyway?

[Really Rose]

Went to Hep clinic for first visit and met with a nurse practitioner.  Doc came in for the last five minutes and the practitioner told me that would probably be the only time I

[Really Rose]

Someone resurrected this post and I found it ironic that it appeared so close to the end of my tx.  I was in an emotional turmoil at that time and I became determined to give it my best fight.  Of course, once week 48 rolled by and I questioned my decision, but I persevered.  I cannot sugar coat it for anyone, because there are so many things that can change while on tx.  I had a great support system at home and that was half the battle.

RR  

[dointime]

Oops, I didn't notice that this was a resurrected thread from 2007!   My bad, but Biju - it wouldn't have hurt if you had pointed this out when you brought it back.  

Rose thanks for posting and letting us know what happened during the time after you posted.  It's rather a novel experience for me to get the before and after news all in the space of a few days.  I really hope your treatment gets you to SVR.  At least you are almost done,

Dointime

[IMstacie]

This is a good site, thanks for posting.  I know Rose started this post but I'm getting a lot of info plus people's attitudes towards tx and medical care from the many other subject posts.  I on tx 6 weeks and already blood levels dropped so low I was going to have to stop.  Funny that very day, dr order new blood tests (1 wk after low results) and results were high enough to continue (even though I feel like I'm dying).  So, I'm still in the game.  Anyway (got off-topic), I'm just learning the language, so to speak, so thanks again for the url.

[Bill1954]

Welcome to the forum. In the future, you might want to scroll up and begin a new thread by clicking on the green “post a question” box near the top of the this page.

A good resource for HCV is Janis and Friends:

http://janis7hepc.com/

I’d say the majority of us in here have undergone treatment; I’m not sure how much feedback you’ll get from those that are waiting. Read through Janis and Friends, and continue to ask questions here as well as elsewhere.

Take care—

Bill

[tuesdaynatasha]

Thanks for being here on this blog. I was diagnosed two weeks ago, no genotype yet...hospital forgot to run the test. My levels are at 114,000.
I have no symptoms. I have a biopsy scheduled for Jan 2nd. I would like to hear about the people how chose not to do the **************. What are there levels like and what is there general health like?
Thank you all again.

[Really Rose]

I decided to treat because I had a drug plan, I was 51 when diagnosed and in pretty good health, copious amounts of accumulated sick time, around ½ million viral load, extremely insulted with the stigma that was placed upon me, had no idea where I was infected by the virus or when, angry,  and I wanted to do everything I could to purge this squatter out of my body.  

I gave myself one kick at the can, and unfortunately, I didn’t get the two log drop in the first four weeks (1.6) and my treatment was automatically extended to 72 weeks here in Canada. I was devastated and determined to finish.  I didn’t want to quit the standard treatment in case the virus built up a resistance to the tx and reduced my chances if I had to treat again.  I, in no way, bought into 72 weeks of treatment when I started.  I never dreamed that it would turn out this way.  However, when I have completed this tx, no matter what the results, I’ll know that I did the maximum I could to try and purge the virus from my body.

RR

[IMstacie]

72 weeks seems long.  I thought 48 wks was a normal length for 1a?  Also, I'm curious, why did you decide on the tx after reading all these posts?  I'm in my 6th week and hating it, i'm so sick, weak,  and blood work coming in very low.  But, just when they thought I would have to stop, back up the levels went.   I did not get a biopsy - didn't want one.  I had slightly elevated liver enzymes, not a real high vl.  After much research, I decided on the treatment so I really didn't see a point in the biopsy at this time.  I'm 56 years old and didn't want to get older and less healthier before taking the tx.  I have 2 genotypes 1a and 2b.  

[Really Rose]

Interestingly, a lot of time has passed since this post.  I did wait until I had the biopsy done and it came back indicating very minimal damage to my liver. However, I did decide to treat and I am currently on week 67 of a 72 week treatment.   At this point I am very exhausted.  It has been a long time.  I got through it without any rescue drugs (as they insist that they don’t work so they don’t offer them here) and had some close calls to get reduced.  I lived with the constant threat of getting pulled off treatment if I indicated any sides I was having trouble with so I basically kept my mouth shut as I would get into some scraps with the nurse practitioner.  


RR

[dointime]

I was diagnosed in 2006 and nearly went crazy with wanting to get the virus out of me.  So I did a telaprevir trial which didn't work followed by SOC which also didn't work.  The tx drugs really screwed me up for 2 years and I still have the virus.  What I have learned from this experience is that it was psychologically impossible for me not to treat when I found out I had the virus, but it was not a smartest thing to do.  I did get a biopsy prior to the trial and I found out I have mild liver damage, so I didn't have to treat right away, I just felt driven to do it.  I wish I had found this forum and asked this question like you have done.  

I am waiting for the new drugs now.  I don't know if I could wait if I thought I had a chance to get rid of the virus now, even knowing what I know now from experience.  But from a rational point of view it really is best to wait for the new drugs providing your liver is not very damaged.  

Good luck,
dointime

[Biju]

Dear
now Iam 32yrs old. at15yrs during blood transfer(1992)cought HepC.
Recently found HCV positive 5.3, Viral load 21lacIU/ml. LFT Normal.
Ultrasound normal. Genotype1.Liver biopsy normal Necro inflammatory score 1/18.
fibrosis score 0/6.
Should I start treatment or Not.

[colorado1]

Hi every body!
I have HepB  . I am looking for Hepatologist In Colorado could any one please recommend me .I will be really thankful for that .
Please email me : ***@****.
        Thank You

[copyman]

very common that the "referred" pain from gallbladder with radiate to the shoulder blade

[ElizabethMac]

Hi......You know how I feel about this.  HAVE the biopsy as soon as you can!!  Find out where you stand.  It's important to have a starting point.
Great site...will be searching other areas.  E

[worry06]

I know how you feel when you found out you have hepc.  I found out during the routing visit when my liver enzyme elevated so high.  The real problem that I could not get over is all the reason that I could contract this disease is not posssible for me, I never have blood transfusion, drug use, different sex partner,.......I went crazy to figure it out and cried every day, could not eat because I was worried about my kids might get from me.  When I found out that one of my kids also have it, I wanted to kill myelf. Because of the people from this forum are so supportive, I forcus on the treatment instead of the guilt. Thank to everyone here.

[Really Rose]

You are all giving me excellent pro reasons to wait for biopsy.  

I am very raw here with this diagnosis of Hep C.  I wake up at all hours of the night thinking about it and every waking hour is consumed with it.  I want it OUT of my body.

However, when I finally get myself grounded I do hope that I think more clearly.  (and you all have helped here since I found out about having Hep C)

I cannot rope in the anger.  Furthermore, I might have proof that when I was at a maternity hosptial 19 years ago for my second child they did find an "antibody"in my blood.  They came three times in one day to draw blood and asked me at least five times if I had a blood transfusion.  I was led to believe it was an RH negative / positive interaction between my blood and my son's.  The reason why I know this is that I wrote it in a journal that I was keeping during my stay.

I am obsessed with this failure by the hosptial and the Canadian blood bank to notify me that I had some type of hep as I know that they could identify hep then but could not tell you which one.  I would have lived my life very differently.  I have asked for my files to be copied and sent to me and I was so confused at the time I even had them type my blood and put that "antibody' on the bottom of my card. I know I have the card here and cannot find it.  I will someday.  However, it would give me an idea if I have had this for at least 19 years as I have no idea where I did get it.

I'll wait for the biopsy.  Thanks so much for your input. Rose

[mauilady]

Definitely get a biopsy!  If you're at stage 1, or 1-2, you can choose not to treat.  Any higher, you'd be crazy not to.  I'm 1b, stage 2-3, grade 1-2, so I started Tx (Peg/Riba, 1200mg) Jan 5th.  Turned out to be one of the lucky ones, as at week 4 my VL was undetectable, so I qualify for 24 weeks Tx instead of the 48.  But you can't make any decisions until you get that biopsy.

FYI: I was told the same thing: that they wouldn't order a biopsy until I had committed to treatment.  But it was actually more like once I expressed an INTEREST in being treated, next step was the biopsy.  Good luck, and keep us posted!

[GrandmaA]

That really seems strange that a pain in the shoulder would be gallbladder. The gallbladder is behind the liver. I had mine out and felt a lot better afterwards. I had multiple gallstones. The surgeon said they were coming out the top. I'm the first person in the family to have my gallbladder removed (and to have hep. C). I think a cousin has it.

I had a biopsy. That's the only way to know if you need to treat now or you can wait.

[Really Rose]

Gramma, the pain seems to come around the side up under the shoulder blade.  

Worry, I am so sorry to hear that your child tested positive.  

How many of you here are treating or have treated?
Rose

[r4c7]

In January 2007, I was in your situation, Rose. I knew I was a geno 1b, but hadn't started treatment and hadn't even had a liver biopsy. Well anyway, I decided to have the liver biopsy first. That way, both my hepatologist and I would know the stage and grade of the disease, which turned out to be early stage 3 fibrosis, and grade 3 inflammation.  After the biopsy was completed, I was referred to a local hepatologist. I was hessitant to go to that hepatologist without doing some checking on my own first. So I got on the Internet...and and I glad I did.

I found a hepatologist in Louisville, Ky.  His name is Bennet Cecil.  I have since discovered he's one of the top hepatologists in the country.  But since I live in Colorado, there was obviously no way I could fly back-and-forth to Kentucky--right?  So I called Dr. Cecil's office.  He recommended an outstanding hepatologist in Colorado.  The long-and-the-short is that I found a top-flight hepatologist with many years of hep c experience, who has managed every possible hep case imaginable.

So the bottom line, Rose, is that if at all possible you need to find the best hepatologist in your area to help you navigate through this difficult and  confusing disease. He is THEE best person to tell you whether to wait for the slew of new drugs, like Telepravir, or proceed with current FDA approved drugs, which may be enough to get you undetectible.

Hope this helps.

God bless!!!  

[pigeonca]

Another reason to have a bx is in order to track (hopefully) improvements in your liver's histology.  Sometimes, even if one doesn't become SVR, treatment can bring inflamation and fibrosis down a stage/grade or more, and you want to know about that, especially if you don't clear.  Same with viral load.  Depending on how fast your viral load drops, treatment durations can vary.  Knowledge is not only power - it's survival.

[bobbyullc]

good move,

i have also wondered about liver reversing stage 1 to 3 damage on it's own when you clear. it would seem like stage 1 and 2 should go down easily as it is only swelling. i googled it and could get nothing? heard anything?

[worry06]

I meant I hope my liver fibrosis may be reversible (??).  

[worry06]

Hi RR,
I was so scared when my GI sent me and my daughter to do bx.  I wanted to have my daughter treat first without bx then I will be next.  I came to this forum, I asked questions and learned a lot of thing from their experience. So I decided to have bx for both of us.  It turned out that I have stage 3 fibrosis, the next stage will be cirrothis (it is not reversible).  My daughter have no stage, she has only inflamation.  Based on this, the plan of treatment changee, I decided to start my treatment in June hoping that cirrothis may be reversible (??), time is not on my side.  Bx is not that bad as I anticipated, my daughter slept through the procedure (she had it done in Children Hospital).  Wish you luck.

[jmjm530]

Best to get a biopsy before you decide to treat or not. If you have little or no liver damage, you may be better off waiting, as current treament drugs can sometimes leave you off worse than when you started.  Also, if your clinic doesn't do a viral load test prior to treating, maybe you can get one from your primary care doctor.

All the best,

-- Jim