34,000 million, is it too high??

2 years ago I went on a weekly shot & my virus count was around 3 million.  I was on the medicine for 3 months & my count went down 75% (excellent!)  I had to get off the meds as my lung collasped and I was hospitalized for over 10 days.  I kept up w/having my bloodwork checked but decided not to go back on the meds (bad decision!)  My last bloodwork in August showed my count to be 34,000,000. I have had a liver biopsy & its clean.  The doctor put me on a daily shot & rib 4x per day.  My 3 month test results will be in next week & the doctor said that if I don't get my numbers down by 50% then I'll have to get off the medicine.  What questions should I ask if it comes back w/less then 50%??  I'm really confused about what happens next.  I've had hep C for 20 years and am in pretty good shape.  I was in excellent shape (finished my 3rd trialthon 2 days before my meds, now am too tired to even walk up the stairs!!) I feel very lost and some of my on-line research just scares me.  I want to be sure to make an informed decision this time around - getting off the medicine the first time around was apparently a mistake.  What happens if the meds don't work?  Do I just get ready to die?  Any thoughts/comments/suggestions would be greatly appreciated.

[cuteus]

please do a lot of reading on your own in adittion to what your drs and members in this forum tell you. You have to read yourself. There are some good studies on Hep c progression if you do a web search. I like to search in vivisimo.com, find it better than google sometimes.  
Today i found this article at a very good site you should read and bookmark, is about HCV in the brain...:
http://www.hivandhepatitis.com/hep_c/news/2005/ad/110905_b.html
go read on HCV. Nobody knows everything about hep c, but you should know enough about YOU and hep c.

[jmjm530]

NO.NO.NO. If you have little or no liver scarring you're in the best of all positions. If you treat successfully, great, the virus is gone. If you fail at treatment, you've got plenty of time to treat again either with different current drugs or wait for newer ones. Again, we're not doctors here, but from everything I've read, you have every reason to believe that you'll live a normal and productive life span, regardless how your current treatment goes.

-- Jim

[jmjm530]

None of here are doctors but if you give some more information we'll try and help a little.

It would be helpful to know your genotype, biopsy stage and what do you mean by your biopsy said your "liver is clean"? Also, are their any negative tx factors such as being male, being overweight, iron in the live, afro-american, other conditions, etc.

Also, what drugs were you on before and what exactly are you taking now. Are the daily shots "infergen"? How much are you taking each shot? How much do you weigh?

Also, do you know exactly what your doctor means when he wants you to get your numbers down "50%" at 12 weeks. Usually they are looking for a two-log (decimal point) drop in 12 weeks. So if your pre-tx viral load was 34,000,000 (was that it?) then you would be looking for no more than 340,000 IU/ml, not the 17 million I think you are suggesting. BTW is your doc a liver specialist (hepatologist) and if not have you consulted with one yet?

-- Jim

[Karay]

sorry, I feel so ignorant!  I don't know my biopsy stage, they never mentioned it to me.  I was just told that my liver was in great shape, no scarring.  My genotype is 1, I'm a white female - 5'3 & 125lbs.  Unknown about my iron levels other then my last blood test showed me to now be anemic.  I was on interferon and am now on infergen (.50 daily) and 200mg of Rib 4x per day. My doctor is a liver specialist.  He said that my viral load must be reduced by 50%  if not then that meant the medicine wasn't working and that I was actually doing more harm then good to my body.  So I just assumed (again kicking myself for not being more pro-active) that he meant cutting my load down to 17,000 million.  I hope I answered all your questions.  Thanks for helping!

[cquest]

Oh hon, don't worry so much...my vl is 62.7 million (at last count) and the damage is very little...go figure...not the end of the world! You got a lot of fight in ya! Stay strong, something better will come along (I'm countin' on it that's for sure!) If not, then I'll formulate another plan of action...there is always another path out of the woods when you think you're lost! You'll find your way too!
Cin

[jmjm530]

Karay,

It sounds like there's a lot more to your story than being presented. I'm confused about a number of things including why your doctor is only looking for a 50% drop in virus and not a two-log drop. I also question the wisdom of treating someone with Infergen who has no liver damage, if that is actually the case.

Have you had a second opinion for another hepatologist -- preferably someone from a larger, teaching hospital. That would be my first step.

-- Jim

[cuteus]

did you post here two yrs ago? I seem to remember the lung collapse issue. If it was not you, welcome aboard.

[Karay]

jmjm530:

Thanks for your reply - I've never heard of "logdrop".  My doctor has never mentioned that when we talk about my levels.  Is the medicine wrong for me since my liver is not scarred??  I haven't had a 2nd opinion (yet!) but its sounding like I should.

[jmjm530]

Some people with little or no liver damage choose to treat. Others choose not to treat. It's a very individual decision and even the medical community doesn't agree which is the right course.

My personal opinion is that those with little or no liver damage should carefully weigh the benefits of treating against the potential damage these drugs can do. Especially if you have a hard-to-treat genotype like geno 1 because in general, hepatitis c is a very slow moving disease.  You should also be aware that newer, and potentially better drugs are now in trial and may be avaialbe to the public in 2-3 years but no guarantees.

I think a second opinion with a hepatologist is your best course for now. Let us know how things work out.

-- Jim

[MerrieJane]

I am at stage 3 (early bridging fibrosis) and have had hep c for 24 years.  I just finally found out my starting viral load...it was 738,000. That seems low considering the liver damage.  Does this go to show that there is little correlation between the two. I hear that the lower viral counts treat better...something in my favor. I just hope my Dr. didn't put the decimal point in the wrong place!

Also...a little nervous for the 3 month mark...I want to stay on treatment.  I am in week 10.

Gotta go....my 3 year old is having a tantrum at my feet....

MerrieJane

[Karay]

Thanks for all your comments.  I've been under the impression that there are no other options and if my load doesn't decrease then I just pretty much die a horrid death (sorry if I sound morbid!!)  Or does this eventually just get worse and scar my liver or turn into liver cancer?

[LvdByGod!]

KARAY, yes, please try not to be that scared at this point if you can help it...many people have hep c for a long time and die from other things way before the hep c can kill off thier livers...if your dr said your liver is in good shape the most important thing for you to do at this point is get a copy of your biopsy report and see for yourself!!! find out the grade and stage and the other details.

you need to know exactly where your liver is at as far as grade and stage of damage...then you take that biopsy report to your second opinion and get his opinion of how the other dr is treating you...tell him the whole story...and bring all your records...you should get copies of all your tests too and bring those also...blood tests, ct scans, ultra sounds...you will need to refer to these for your own study and to keep record of your progress anyway.

For your second opinion try to find the best specialist in your area, perhaps someone here can help you with that, depending where you live...

also, as jm said, why is your dr asking for a 50% drop...when at 12 weeks all is required is a two log drop...(taking 2 zeros off the end of the number). if you have a 2 log drop you are concidered a responder...and you can continue meds...

it just seems strange that a dr would give someone infergen (a stronger med), if they have little to no damage...infergen is very strong stuff...it is usually used for nonresponders or relapsers...but you had to come off treatment for a lung problem, not because you didn't respond...ask your dr about this...it would be nice to know why you couldn't have just had the normal stuff again...but, he may know exactly what he's doing for your best outcome...so, don't assume the worst until you find out more...

it could be your dr is just very pro treatment...kill that virus and make him die attitude...there is an opinion that the virus is easier to kill in the lowest stages and grades of liver disease...in other words waiting to treat until the liver is damaged may not be the best advice...cause some think this adds to the difficulty in getting an SVR...and if you have that high of a viral load ???

also remember that you're viral load though high, does not tell you how much "damage" your liver has...only the biopsy can do that...damage tells you how you are really doing and if you are moving slow or not...

some folks choose not to even treat until at least stage/grade 2. i have heard that most drs want to treat if you are stage 2 or higher...and tell folks they can wait a bit to treat if they are a 1 or lower...so find out your stage and grade. there are better meds down the pike no doubt so try not to worry...they are doing alot of research and have many new meds being tested even now...so if you have no damage you can probably wait for the new stuff...

your high viral load may be the reason your dr is treating so aggressively...some say high viral loads are more difficult to treat than low ones...so perhaps he's just being really aggresive (aggressive) and trying to kill it now before damage starts...that would make some sense...cause more damage lessens chances to clear...so perhaps he wants to try to kill it off early befor damage begins, because viral load is so high???? find out his thinking on this...

here is the important thing for you to know...as others have said above...and that is that hep c is generally a slow moving disease so even if you must go off treatment again...you have time to try new treatments, especially if you have little to no liver damage, (which it sounds like you do)...this is why you must find out exactly what your biopsy says...just ask the dr for a copy...and ask your dr to explain his treatment ideas to you based on that biopsy...make him go over the whole biopsy with you and explain it...

please come back here and fill us in too...we really care and would love to know what's going on with you and be able to support you...it will also answer some very interesting questions that your post brings up...i hope you will not worry yet...so far it sounds good for you on the biopsy, based on what the dr said...

when you get your biopsy post it here so we can all take a look at it...perhaps we can shed some light on it too...

BLESSINGS TO YOU, WELCOME HERE, AND HOPE TO SEE YOU SOON...

sandi

[cuteus]

in addittion to what jm said, I would also consider the extrahepatic manifestations many get with hep c infection. Although hep c is a "slow moving" disease in most people, the extra hep things can be faster moving and "get you" before hep c does. Just one more thing to research and consider.
http://www.hepnet.com/hkn/c21.html

[strator]

From what I've seen vl are pretty much the same as 3 year olds. Just when you think they're peaceful little bundles they start jumping up and down all over the place for no readily apparent reason. Then they're better again. When my 13yr old was little I thought he had multiple personalities.  Liver damage versus vl is even crazier like trying to project what kinda adults kids will make.. Hey I was a little angel with a stable upbringing but spent my adult life getting into in all kindsa irresponsible trouble. My 30 year old daughter had no stability growing up and was always in trouble as a teen. Now she's happily married to a great guy, they own a nice house,she's a wonderful stable mother and works with toubled kids in inner city schools. I have a high vl and feel fortunate to only be a grade 2 stage 1-2. Go figure. Concentrating on what I can control gives me a sense of progress and less to worry about.
Stay well,
Don

[Karay]

I cannot thank you all enough for all your informative replies.  I actually feel much better about my situation.  I'm also extremely angry @ my doctor.  My appt is next Tuesday & at least now I feel like I'm armed with the correct questions to ask.  I'm just upset that he never mentioned half of the stuff you all talk about (ARGH)  I also plan on going to a teaching hospital in the Boston area as soon as possible.  My concern here is that my doctor maybe giving me incorrect advice (very scary)  He is letting me take up to 4 Advil per day to combat my headaches and bodyaches but now that I am researching things, I have read everywhere that this could actually damage my liver.  What do you all think about this??  He states that its more important for me to finish up my 11 months on the meds then to worry about the effects of Advil.....its all very confusing.

[MerrieJane]

Kalio: I will be thinking about you in a few weeks.  Yes...it is a nailbiter!  My nails are all bitten!  I want this treatment to work...but I have to somehow accept the possibility that it wont.

Strator:  You are right.  Just knowing that I am doing what I can is a relief.. I am trying to accept the things that aren't within my control.  I can just almost taste the sweet success of a SVR though.  I love those letters....SVR...:)

[BillyC]

I'm 52 and have been HCV+ for at least 20 yrs. My liver is at stage 3. I started tx with a 2.8 million viral load. Now at week 14 of 15 micrograms Infergen and 1200mg of Ribavirin daily. The load was 10,000 at week 12. I've tried Interferon Alfa and Peg Intron, both with Riba and never had a load below 80,000. I don't expect SVR, but protease inhibitor VX-950 is in the pipeline. So far, in trials, it shows SVR in 14 days.

[Treme]

I just found out (2 months ago) that I have HVC genotype 1 b.  Had a liver biopsy 3 days ago.  Viral load is 134,000.  Awaiting results of biopsy.  What should I do?

[Marcia2202]

Welcome to the forum!

I think you should wait for the biopsy results before you do anything. Read a lot and educate yourself about this disease. You can find a lot of info and links here and many people are very well informed and can help you.

First I think it would be best if you start a new post with your question, as this one is from 2005 and has is discussing something else.

[adrialo]

Greetings to everybody!!! Well, I have been diagnose positive, I cant denie: Im scared, began to look for information and found myself in many of you. Im from argentina and hope that my english is understandable. Im HCV 1a. How do you cope with this desease, treatment? Next week I have to see my doctor. Thanks a lot, just for reading  I wish the best for everyone of you who are fighting silently each one with are own fears

[Kathy73]

Welcome to the forum!

First I think it would be best if you start a new post with your question, as this one is from 2005 and has is discussing something else.

I'm repeating Marcia2022's post. I want to make sure you get the response you need. Please start a new post.