Newly symtomatic

[SanchoPanza]

Hi everyone! I've known I carried the Hep C virus for ten years now, but because my liver funtction tests have been in the normal range (Ast, Alt in the 20's), I suppose I've been in denial, hoping that I would somehow remain asymptomatic. I recently turned 58 and have been experiencing weakness, confusion, and muscle and joint pain. I'm now wondering at what point I pursue treatment. From what I've been reading, it's not clear whether or not those with normal lft's are good candidates. I just found this site and I'll be doing quite a bit of reading here. Any info would be greatly appreciated.

[sfbaygirl]

My PCP knows I know more about Hep c than he does and is willing to listen to my assessment of what comes next. You need to get a referral to a GI and having a "rock star dr" is the best thing to start with. Gish is the guy. I also know one at UCSF- Davern. Very through and knows his stuff. Gish has other Dr's in his practice so you may see one of them. They got me in quickly and I was amazed at what a good Hepatologist can make. They spend most of their time in research.  Start with the best so you don't go through what I did. I had an awful GI throughout tx who wasn't up on the studies or anything else, he mainly dealt with colonoscopies. So my advise is to start with the best so you can put your trust in him to do the right thing on tx.  
good luck!  

[Trish77]

I concur with everyone else.  Get the biopsy, the blood tests, find out what condition your liver is at and what genotype you are.  The more information you have, the better informed a decision you'll make.  From what I've read about 30% of persons have ALT/AST levels that don't concur with the state of their liver damage, so to go on that alone is to deal with  incomplete and potentially misleading information.  If you're symptomatic, I'd get the biopsy.  It doesn't mean it's advanced, it just means you should KNOW.

Good luck.

Trish

[SanchoPanza]

I've had the same PCP for 20 years. His name is Bashour. He's a good cardiologist, but I don't have heart problems and he doesn't know too much about Hep C. I'm shopping around for a new doctor, probably a local internest. Thanks for the tip,sfbaygirl, I'll check out the Gish group.

[sfbaygirl]

Yep Walrus hit it on the head, get those tests. I noticed you are in Daly City. I am near you. You could check out the Gish group in the City. They are the best!  I had a consult and still talk with them.  What Dr. have you been to?

[IAmTheWalrus]

Welcome, Sancho!

I don't know if I would jump to TX, but I would certainly jump to get a thorough assessment: genotype, viral load, and liver biopsy. This information is needed, at least, to make an informed decision on TX/ or not TX. MDs know a bit more about the progression of this disease than they did years ago.

You may not now, or ever, need to be on TX. But getting the information now might indicate treatment that could save you from liver cancer of a liver transplant in the future. Depending on various factors, including genotype can have a significan bearing on how long YX is needed and what the chances of success (SVR) would be.

Best of luck,
Walrus

[SanchoPanza]

Thank you for the warm welcome! I had been feeling a bit isolated and it's wonderful to know that there's a place where I can communicate with others in the same boat.  I guess it's time for me to re evaluate this situation. With age being a risk factor, I feel the need to act sooner than later. Reading dry scientific journals is never as informative as advice from the "horses mouth"! I hope to be here learning and making new friends for some time to come. Thanks again for your input!

[sfbaygirl]

Welcome to our forum. You will find tx/ dont tx people on this board. Good thing as you can decifer which argument holds true for you.  Do you have a Bx?  A Viral Load?  It will be important to find out how much fibrosis you have. Perhaps you have little damage and perhaps a lot. Some of us at stage 1 just want to get rid of it. I became symtomatic and was determined to start tx and did. I relapsed when I couldn't finish the extended tx I needed. You will read how bad the sx are and how they can ruin you life post tx. I have 2 post tx sides that will never go away, but I really wanted to tx and sorta don't regret it. If I had been able to do the full 72 weeks, I think I would have been cleared of the virus. It wasn't to be. But you should read all the back and forth re; tx or not tx before you decide to do anything. My good buddy Forseegood has read them all and moreso, she wants to tx. More power to her and I will be here for her always.  Lots of info and good friends here, so stick around and learn and make friends.

Good luck to you!  

Linda

[Forseegood]

love your name! Don Quixote is one of my favorites! anyway, I'm with you...I've always had great labs, and relatively low liver damage, and frankly, if I wasn't symptomatic, I'd prob wait till the new drugs are farther along in the trials, but I've been symptomatic myself, and I'm 54, so I figure I'd better go now...I thought by now the trials WOUILD be further along then they are, but no such luck...am looking into what they are going to do in March, but from what I see, the trials still aren't configured to my liking...we'll see...but I'm going pretty soon, and no one has dragged their feet longer then I have, on this board anyway, to my knowledge...welcome

[FlGuy]

Welcome to a place where many of us tilt at the hcv windmills.  If it's been a while since you have been fully assessed, it may be time to get thee to a hepatologist to get the 360 view of your health and liver.  AST/ALT don't tell the entire tale and sometimes they act contrary, so don't consider them the barometer for your condition.  I think that would be enough metaphors for a single post.  Good luck and regards to Don.