Thanks hepatitisresearcher

hi, great help you are providing. a few more questions if i may. i have NOT treated yet. 1)do you think the hep A or B vacinations can cause the viral load to increase? the reason i asked was my vl jumped from 9 million to 20 million about 1 month after getting the "A" vac, then went back down to 12 million about 1 month later. i know vl's tend to jump around but i was curious about this.
2) probably a stupid question and if you knew the answer you would be a millionare but here goes anyway,  since a high vl is a negative predictor of svr do you know of a way to lower the vl load before starting tx?
3) and one last thing about fibrosure, if you did not have access to fibroscan and could not get a biopsy for "yourself" would you trust the Labcorp Fibrsure test if the result was F0 "no fibrosis" and A1 "minimal activity" for necroinflammat activity score?
4) do you know of a place in the phila/nj area that i could get the fibroscan test done?


THANKS again for the time you have spent here

[jmjm530]

Closest Fibro*scan device I know of would be in Boston. While you may not techincially qualify for the trial without a biopsy, as a private patient of Dr. A you may get one. You might want to call the office in advance and double-check with the scan tech.
http://tinyurl.com/nbavn

I'm also interested in what HR says about getting VL down. Putting aside the fact that your herbologist *guaranteed* he could get it down, I found my own viral load fluctuated wildly. At one time it was over 30 million IU/ml, then a few years later it was 16,000 IU/ml. Then three months after that it was 1.5 million IU/ml. This seems to be in contradiction of some who say it's constant but those are my numbers and other here have also report variances.

I always theorized that if one wanted to treat -- but had the time to wait -- why not take monthly viral load tests in the hope that you might hit a "low point" to be defined as you like, be it 600,000 IU/ml or 400 IU/ml, or just a lot lower than where you started. Then once the low point is hit, treat right away. Of course this is just my personal musings on the subject and it would require both frequent VL tests plus putting off a start date. But back to your hebologist, I have heard anecdotal accounts of herbs lowering (not eliminating) viral load, so if you planned on proceeding that way anyway, you might combine your herbal treatments with monthly viral load tests.

Be well.

-- Jim

[jmjm530]

that should have been "400,000 IU/ml" not "400" although 400 would be nice in a relative sort of way :)

[GrandmaA]

I lowered my viral load before starting treatment by taking colloidal silver. One tsp. a day for 6 months. It was way over 3 million and it went down to 780,000. I would not take it for more than 6 mos.

[NYgirl]

Viral load changes constantly - and drastically.  I would not worry about trying to lower it before treating because that is the job of the interferon and really if you could say lower it by taking an herb or medication - would that really be a TRUE predictor?

If the "real" number of activity of the virus is 1000 - I would say THAT was my real baseline number NOT anything that might lower it/ because it can change all of the time on it's own.

Otherwise it sounds like it could be like cheating in effect.

Plus I wouldn't spend money on any product that really claimed to do so since the only known thing that really kills the virus would be interferon.

[GrandmaA]

Dr. Zhang's oliveessence lowers viral load safely. I know several people who did that. But I didn't know about Dr. Zhang when I had my biopsy or when I took colloidal silver recommended by my cousin, some products are much better than others. Let's keep an open mind so we can keep growing. Once we think we have all the answers, we don't.

[cuteus]

I know of at least 10 members here, myself included, who were considered low viral load pre tx and it made no difference in achieving a negative status by wk 12. we all had detectable virus.  I would take Tallblonde's regimen before colloidal silver, if I was trying to lower the vl.  she managed to get it under 10,000 and keep it there with supplements that were not as questionable as colloidal silver.  but, in my opinion, the pursue of lower vl is useless, if the liver enzymes remain high.

[copyman]

Tallblonde's regimen ? can you elaborate what this regimen is? are you saying that starting with low enzymes is more important or getting them down when on tx? thanks for your input

[Hepatitis Researcher]

YOUR QUESTIONS:

1)do you think the hep A or B vacinations can cause the viral load to increase? the reason i asked was my vl jumped from 9 million to 20 million about 1 month after getting the "A" vac, then went back down to 12 million about 1 month later. i know vl's tend to jump around but i was curious about this.

ANY PERTURBATION OF THE IMMUNE SYSTEM CAN CHANGE THE CURRENT PRESSURE THAT SYSTEM EXERTS ON THE VIRUS. Vaccinations can certainly do that, but I do not think that this would be a lasting probem. For someone with liver disease the A and B prophylaxis is the right thing to do.


2) probably a stupid question and if you knew the answer you would be a millionare but here goes anyway, since a high vl is a negative predictor of svr do you know of a way to lower the vl load before starting tx?

The VL is some indicator how well your immune system is currently fighting the virus and also how much mutational power the virus can muster at the moment.Lowering it before IFN/riba with another HCV interfering drug  or immmune stimulator ( eg Thymosin alpha) might reduce mutant base or ( with thymosin alpha)increase immune pressure. But these treatments are not approved in the US and you have to  use what your local Dr has to offer.
There are some OTC immune stimulators that  might have an effect, but this would be experimental.


3) and one last thing about fibrosure, if you did not have access to fibroscan and could not get a biopsy for "yourself" would you trust the Labcorp Fibrsure test if the result was F0 "no fibrosis" and A1 "minimal activity" for necroinflammat activity score?
This result is neatly on the positive side ( I commented on the comparison fibrosure/fibroscan before). It means you are probably quite low in your fibrosis.

4) do you know of a place in the phila/nj area that i could get the fibroscan test done?

I know of the Boston site - Dr. Afzhal - as jmjm530 mentioned. Also Dr. Schiff in Miami has one. In case these sites are unaccessible to you I have one, but it is too far away for you -Los Angeles.

Is your Dr. not planning a biopsy anyway?

[Kalio1]

I am in Santa Barbara, which is not far from LA. Is it possible to obtain one in LA? I'd love to be able to get one. As a matter of fact, I was planning to fly to Boston to get one.
Please let me know if you find the time.

[sfbaygirl]

Kalio; I was just talking to John about going to Boston to get one! That would be fun to go together (if possible) if we can't get one in L.A.

HR: I would like to get a Fibrosure, as well, in LA. Does a biopsy have to be done shortly before to get one?


Thanks again. Great to have you here.

[copyman]

thanks for your reply to my last questions. to answer your question about my doc (hepatologist) ordering a biopsy, he does not seem to order them automatically even for geno 1 unless he sees other markers such as abnormal labs, protime,platlets,afp,high enzymes,ultrasound/cat scan,physcial exam. all mine normal except alt high normal. plus i told him i was going to treat regardless of what the bx result. he told me that after seeing 1000's of patients he has a good idea what someones fibrosis is. he is distinguished professor of medicine  director, medical school liver center and also director of national liver institute. so i have to beleive in his decision. i did the fibrosure on my own for peace of mind.

one last question for now and probably the most important for me, if you had HCV with a high VL (10 mil +), little liver damage,normal labs BUT was feeling some other extra hepatic symptoms such as fatigue, muscle aches, intermittent ruq pain,etc, would you treat with this current combo or would you tough it out and wait for new drugs?
i have to be honest that this current regimen of drugs scares the hell out of me for side effects during and even more important after treatment and is the reason i look at the pegasys everyday in my fridge and have not had the guts to start yet. if not for reading the horror stories on this and other sites i probably would have started by now but keep putting it off. thanks once again

[jmjm530]

Speaking of vaccines...

Five years ago -- before I treated --  my ALT was 100, AST 86, GGT in normal range.

One month later I took the Hep A&B vaccine.  The same week I took the vaccine, I also started taking some raw Chinese herbs brewed as a tea from a Japanese practioner of acupuncture and herbology. Ten days after that ALT was 262, AST 224. 10 days later I took a Hep B booster shot. Ten days later my ALT was 649, AST 592 and GGT quite elevated. It took around seven months for enzymes to return to pre vaccine/booster/herbs baseline. My hepatologist at the time likened it to an acute reaction and delayed combo treatment that I was about to begin.

One hepatologist said he never heard of the Hep B vaccine/booster elevating enzymes and blamed it on the herbs. Another said he also never heard of the Hep B vaccine/booster raising enzymes but it was possible. He also said it might have been the herbs or perhaps a combination of the two.

Because of this, I stopped with the vaccines for both Hep A and Hep B and therefore to this date do not carry either antibody.

Interested in your take on the possiblity that the Hep B booser caused the elevations. Also, assuming the possiblity that the Hep B vaccine caused the elevations, do you think it safe to take either the Hep A or Hep B vaccine now that I am 8 months SVR with normal enzynmes? My feeling was maybe take the Hep A vaccine, but not the Hep B.

Thanks for any information on this.

-- Jim

[jmjm530]

Looking at my notes, the Hep B booster shot was one month after the Hep A&B vaccine.  By that time enzymes had elevated some but the biggest jump seemed to be after the Hep B booster. That's why I think the Hep B vaccine and/or booster may have played a role. Or as the doctor suggested maybe the herbs also played a part.

[jmjm530]

I think it's terrific you're considering getting a scan with HR. If I were more local I'd be banging on his door as well. That said, depending on how your current treatment goes, I wouldn't rule out a trip to Boston, if for no other reason to get another opinion from Dr. A. who has a vast treatment database not to mention being being involved with a number of important trials including Vertex. If it were me, I'd see both, especially if a re-treatment decision ever comes up, which hopefully it will never.

Forsee,

Some of your posts lately suggest a new vigor and confidence that is refreshing. Have your lose dose experiments with Lexipro started to kick in, or have you simply changed brands of Sushi?

Be well.

-- Jim

[copyman]

hi jim, i only got the first of series of two hep A vac and due for the 2nd part 1/2007. i still have the first of 3 for the B vac in fridge. i was afraid to take it after seeing my VL increase with the A shot. i contacted glaxo smith kline after this happen and they said it was possible for vl to increase but was not specific, lol i guess for fear of law suit. these companies and docs are so scared to answer anything for fear of law suits.

i still have to give some thought about the TCM herbs. still investigating.....

i'm so confused about starting this tx. i feel my virus just "woke up" within the last few years and now afraid it may start to do damage or is doing damage to liver and/or other organs with my high viral load. my plan is to start tx 1/2007 and do pcr's 2,4,8,12 weeks. if not "completely clear" by 12 weeks STOP and wait for better tx. i still can not beleive that in this day and age of modern medicine someone would have to take harsh medicine for a whole year and only have a 40-50% chance of success!!!! what the hell is going on with this world!!! HCV is labled as a junkie virus and junkies dont vote. on the other hand they found the cure for HIV because gays have a big vote power and pressed the politicians for funding. sorry for the ranting.

[Hepatitis Researcher]

First thank you for your friendly words, they were appreciated. This is a boiling soup of emotions, quite understandable considering the tough spots in which many participants here are stuck.

Your enzyme elevations/duration of such were quite dramatic and indicate a bout of hepatitis induced ( toxic? HCVflare? HBVflare(I take it your HbsAg is neg and your HBV core AB is neg also?) autoimmune hepatitis?) How were platelets, Bili  and Alb during that flare?
You said you had the A+B vaccine and yet still no Anti-A? The HAV vaccine tends to elicit intense responses and there is a lot of unspecific B cell stimulation coming with that. The B rarely leads to much reaction other than at the i.m. injection site. Thus you had two Bs and still no measurable AB > 10 miU/ml?!Did you get the quant AB lab report? ( in the US >100 is considered "POS" in many European countries  POS  is when >10. Something to discuss in itself.
What argues against the herbal toxicity is the long duration of the flare. What about HCV viral loads in these times? I have seen and heard of HCV flare ups lasting a few month but its rare at such ALTs.
Now you are SVR and ask if you could get a third B vac to finally get the Antibody.This is a risk/risk balancing question in your case considering that particular history.Do you have any reason to think that you are exposed to an above average HBV exposure risk?
Everything is speculation at this time. But first some more data to the above questions.

[Hepatitis Researcher]

I can perform a fibroscan here in LA for you provided there is good reason and real medical need for it.We would need to discuss that per tel. A biopsy is not needed.

[Hepatitis Researcher]

YOUR QUESTION
one last question for now and probably the most important for me, if you had HCV with a high VL (10 mil +), little liver damage,normal labs BUT was feeling some other extra hepatic symptoms such as fatigue, muscle aches, intermittent ruq pain,etc, would you treat with this current combo or would you tough it out and wait for new drugs?
i have to be honest that this current regimen of drugs scares the hell out of me for side effects during and even more important after treatment and is the reason i look at the pegasys everyday in my fridge and have not had the guts to start yet. if not for reading the horror stories on this and other sites i probably would have started by now but keep putting it off. thanks once again

You have genotype 1a? You seem to have very little, if any fibrosis, high normal ALT. Sorry, you might have mentioned this somewhere - but this is getting a little complicated to find amidst all these comments- how long do you know you have HCV. I am trying to find out if you are are slow fibroser or a fast fibroser. ( the French coined that term. If you are slow you might be advised to wait for the next wave of improvement that could come sooner than we think if that incredible strange Alinia puzzle turns out to provide an additional powerful drug for a combo. ( Alinia is availabe right now for other indications but we have to find out how it would do in an Alinia/IFN/riba?? combo). Or in two years with the Vertex drug addition.
But you do have a good Dr.,  in the end you will need to follow his advice after you discuss all your options with him.
Should you not treat now you need to follow ALTs and maybe Fibrosure from time to time, to catch the drift.
One last thing if your VL is " >10 " you need to find out how high it really is. It might be 50 Million and that would be of some importance to know. Since you have "normal labs" how do you know you have "little liver damage"?

[Forseegood]

Hello Mr. Hepatitisresearcher! been avidly reading your posts like everyone else, thanks so much for all the info you've been giving us...very generous of you....btw, I'd sure like to get on that bus to your fibroscan machine! I live in Los Angeles (not too far from Cedars), and it sounds like Kalio and SFbay girl are coming too, do you give twofers? (just kidding) really very interested in this...I don't know if you are willing to give out info, or how to go about finding out about this...please let us know....thanks soooo much...I have heard that it was here and I've been trying to research where and how, this board offers many nuggets of interest...once again, thanks so much! have a pleasant weekend!

[Eisbein]

When you get a chance, would you PLEASE drop down to 11/09/06,
to the thread titled:

Likda K's thread cont/hepatitisresearcher/Willing/Ina/ others, by
JimJim 530.

Doubledose, Willing and myself asked a few questions.
We would love to hear your comments.

Do stay a while,
Ina

[sfbaygirl]

Okay, Forsee pack your bags, Kalio and I are bringing the bus 'Further' down to pick you up for our Fibrosure's. LOL I guess you don't have to pack, since you live close by. I am ready!...(not for Nuelasta either). Since I haven't had a bx in years, I really want to know whats going on with my liver. Do you have my email? Send me a note and we can talk about this, if you want.

[Kalio1]

I have not had a biopsy as one was not recommended because I was treating. I then talked the doctor into a CTscan when I relapsed which showed cirrhosis. I don't know what qualifies as "medical need" but will give any info. you need to establish that need and see if I meet your criteria. My email contact is the name I use here and cox.net. I am unsure how else to obtain your phone contact number to discuss this further.
I think I know who you are as I followed your clues in previous posts. It is quite an honor to have your input here, thanks again for taking the time to share your valuable expert opinion with us.

[jmjm530]

Copy,

Thanks for your response.

Tough decision you're facing. I know. Been there, thought I'd do that. Then this. Then finally that :) It took me several years to finally decide.

You know my opinion. Everything being equal, if you're a geno 1 with little or no liver damage, wait and monitor. I know that Alinia has shown great in vitro (test tube) promise, but to date still haven't seen any success stories in this country, in real live humans. HR is optimistic that used perhaps in combination with interferon and ribavirin, Alinia may be one answer. This is encouraging. What I do know, however, is that within the next 6-12 months we will have SVR data from the VX-950 trials. In fact, Dr. A. already talks about encouraging "early" SVR data in his audio address on the Clinical Options web site. I take "early" to mean folks non-detectible after EOT for a period less than six months.
Given this, if it were me, I'd put off any treat or not to treat decision for six months to a year, if I had reason to believe I had little or no liver damage, and perhaps even if I had more damage, but that's just me and certainly no advice.

As to the "monitor" part. Your Fibrosure score of F0 is very encouraging. Next step if you want might be Fibroscan. Dr. A. in Boston seems like the right choice considering where you live. Dr. S. in Miami would be another. Both are excellent clinicians and hep C researchers. So, it just wouldn't be the scan but it would also be their knowledge base of treating large numbers of Hep C patients. Advice here is great, but nothing beats sitting down opposite an excellent hepatologist who has your full medical records in front of them. The step up of course, would be a liver biopsy. Still considered the gold standard although some think it may be relegated to silver in the not too distant future :) You say you live near NYC? Have you considered consulting with either Dr. A or Dr. D? Neither has Fibroscan, but both are excellent clinicians and would probably facilitate a needle biopsy if indicated.

Good luck with however you proceed. And please keep me updated on that DR. of TCM if you decide to go that route.
------------------

HR,

Yes, this place can be a "boiling soup" at times, Duck Soup at others :) Hopefully, you see it for what it is, as your presence is well appreciated here.

I'm going to try, but it may be difficult to come up with test results five years back unless the computers or my previous doctor(s) kept them. In those days, I really paid little attention to Hep C, and barely knew that ALT was different from a BLT :)

What I do know is that this was probably my second go-around (or possibly third) with the Hep A/Hep B vaccine. The first time was probably a year before and no noticable bad reactions although I may not have been monitoring enzymes at the time. Just don't remember. The first vaccine didn't stick based on follow-up antibody tests. I don't know which ones were ordered but I was being seen by a leading hepatoloigst so I'm going to assume the right tests were ordered. Part of the reason it may not have taken is because I may not have followed up for the second or booster shots. In fact, if memory serves me, that's why I took this second round where the enzymes shot up.

I understand that it's purely speculation, but assuming the antibody tests were correct -- that the vaccines never took hold -- are you saying that the "flare" in enzymes were more suggestive of a Hep B vaccine reaction as opposed to Chinese Herbs? Are you saying that this flare may have resulted in a temporary autoimmune hepatitis. My doctor did liken it to an acute reaction but maybe he meant autoimmune hep.

No, I'm not at risk for Hep B, but was just covering my bases because of my Hep C history. What's puzzling is that it appears I didn't have the reaction the first (or possibly the second) time  had the vaccine. Just the third.

So...if it were you...would you take the Hep B vaccine again? The Hep A vaccine? Both? Neither? And if I did decide to take the vaccines, what would be the worst case scenario? A temporary flare in enzynes again? The virus returning (my current hepatologist said this would not happen)? Or something else?

From what one hepatologist told me when the question of alcohol came up was that in a sense -- now as a SVR with stage 2 damage and hopefully decreasing -- that I didn't have to treat my liver any differently from anyone else. Certain drugs and alcohol levels are toxic to anyones liver but that doesn't mean I couldn't take these drugs -- like Statins -- or drink in social moderation. So, while never discussed, I extrapolate that if for for some reason I didn't take the Hep A or Hep B vaccine, and then for some reason became exposed to either -- that my liver would not be damaged any more than someone in the population who hasn't had Hep C? Is this reasonable or would an episode of Hep B or Hep A on top of my history of Hep C be quite serious? Just trying to weigh the risks and rewards of taking the vaccines versus not.

Thanks again for all your help.

All the best,

-- Jim

[sfbaygirl]

Hi! You are up early too! Check your mail, I sent some info on the Scans.

Linda

[jmjm530]

To make a long story shorter (the long story just got lost when my notebook ran out of battery :) ) --

While waiting for my first Hep A/B vaccine, I noticed the vial said quite clearly something to the effect "Shake well before injecting". The first nurse didn't shake it. The second time they didn't shake it. And the third time -- shot administered by a doctor -- they didn't shake it, even though I asked.

Called the manufacturer and ended up with someone up the knowledge chain who said, yes, the vaccine should be shaken or it might not take. One of the nurses suggested that the vaccine is mixed well enough just by the process of sucking it into the syringe. The doctor told me they never shake it. Again, it's written clearly on the vial.

In your opinion could this have anything to do with why the vaccines never took? Or perhaps how I didn't get enough vaccine to build antibodies but enough to get an autoimmune reaction.

In the event I ever do get another vaccine shot, probably don't have to tell you who is going to get their shaky hands on the vial before the nurse :)

-- Jim

[jmjm530]

To your original question -- was that just the hep A vaccine or the combo hep A and B? Also, did your enzymes rise after the vaccine or just your VL? If I read Shiffman right, a VL variance from 9 to 20 and then back to 12 million is insignificant and could simply be accounted for by testing variances. Enzyme elevations -- like I had -- are another story as I assume the tests have significantly less variance. Like HR suggests, Fibrosure appears to be most accurate at the ends of the spectrum so a reading of FO should be very encouraging.

-- Jim

[sfbaygirl]

Now are you going to pull out or just push in, when you give that injection? None of my docs or Nurses shake, rattle, roll, or pull out when giving me a shot. No peanut butter and jelly please! LOL

[sfbaygirl]

Yep, that new vigor that Forsee has is refreshing. I think I need some of whatever it is your taking. NO vaccines for me though! LOL

[jmjm530]

SF: Now are you going to pull out or just push in...
-------------------------------------------------------------
I hope John -- is that your husband's name -- doesn't have access to your computer. LOL.

But seriously, my current doc lets me do pretty much whatever I want now, so if I asked for the vial I'm sure he'd hand it to me and let me inject myself although it would probably be easier to make sure the vial was just shaken and let the nurse do it. Actually, I planned on making a real point of it the last time but the doctor walked into the room with the syringe already full.

[sfbaygirl]

Yep, John reads what I let him ;)  He has been very interested in HR's posts. He even asks if Brian is visiting. I have come to hate that!

Actually, I talked to John about coming to Boston to see Dr. A and getting the fibroscan. My brain doesnt' remember the difference between them now, but I haven't had a lot of sleep. It is just 6 am. here. I think it is time to get some kind of scan, for tx decisions before I end at 48 weeks. My doc won't give me the script for CT or BX b/c of insurance. It sounds like I may need one for this fibrosure though. I am sure if I am paying, he will write one.  I have been worried about the 10 week PCR that was Not Quant, but I believe detectable to >75-200.

I LOVE Boston.  John went to college there and we go for reunions. I can't eat clams here anymore. The seafood is so superior there!

[jmjm530]

That was the purpose of my first scan which I had during treatment. Since my bx was 3 years old, I wanted a more recent indication of my liver health before making a final decision on whether to extend beyond 48 weeks.

The scan showed around stage 3 -- possibly a very high stage 2 -- and ruled out cirrhosis 90%. Based on that, one doctor recommended 48 weeks, i.e. not to extend. Another consultant, also recommeded 48 weeks based solely on my RVR (non-detectible week 6)regardless if I had cirrhosis or not. A third doctor -- my treating doctor -- wanted me to extend because of age (59) and histology (stage 3). His point was that some of the extension rules (36 weeks past non-detec, etc) were for younger folks with healthier livers. We finally negotiated 54 weeks which was 48 weeks after being non-detectible. After agonizing over the decision, I did the 54 weeks. It should also be mentioned that this doctor's PA, thought I should have stopped at 48, again based on my RVR.

Yes, see HR if he is willing and definitely go to Boston and see Dr. A if you can. Regarding Boston, I'd make the appointment because he may be booked months in advance. However, the fact you need an opinion prior to ending treatment should get you in sooner, if you make that case to the right person (not the appointment secretary) -- perhaps the scan tech, a NP, or the doctor himself. That's how I got in as fast as I did.

-- Jim

[sfbaygirl]

Thanks! I already have Dr. A's number. He sure looks like a grump,  but so do I these days ;0  

I have 20 more weeks to go, so hopefully that will be enough time to get in for another opinion. I forgot you did 54 weeks. That was a hard one, but worth it now that you are SVR and just about back to your ol' self.

Duck Soup, huh. Now I have this picture in my mind of that movie and the people on this board. Too funny! LOL

[Forseegood]

Boston and Los Angeles too huh? do they give Senior junket rates? God I hate that word!!!! when I turned 50 they sent me that AARP Magazine. ..I jumped on it and through it into the trashcan before anybody could see it, ha ha!... Add just a little shallow about aging along with my many other flaws...but I'm the same old me, like to think of myself as a crunchy-granola peacenik, sunshine and moonbeams, for the most part...

gee, these left coasters are up early...but I'm going back to bed, got a guilt trip about those pancakes I just ate, better sleep it off...

[copyman]

not sure if i understood your reply to me. maybe you or perhaps jim could explain, you wrote:
Should you not treat now you need to follow ALTs and maybe Fibrosure from time to time, to catch the drift.
One last thing if your VL is " >10 " you need to find out how high it really is. It might be 50 Million and that would be of some importance to know. Since you have "normal labs" how do you know you have "little liver damage"?

as i posted before my "labcorp quantasure plus" pcr's were,
6/06- 9 million, 8/2006- 19 million (after hep a vac), 10/2006- 12 million.

i did not have a biopsy but my fibrosure test showed F0 & A1, no fibrosis & minimal activity

i'm kind of puzzled at what your wrote in the last paragraph about it could be 50 million and how do i know i have little damage. what did you mean i need to find out how high it really is? i did 3 pcr's in the last 6 months, is this not accurate enough? and i thought you said the fibrosure was a good test for fibrosis? thanks again

[jmjm530]

I'll give it a shot from my end. Basically, what I think HR is saying is that if you're not going to treat now, you should monitor your liver -- the watch n' wait approach. I agree.

For me, Fibrosure seems one way as long as you stay around FO. My understanding is that in the mid-range F2-F3, Fibroscan becomes less useful as screening tool. Again, Fibroscan is the next step up and then needle biospy as I mentioned in previous post. H*ll, get all three, I know one of our members TallBlonde did, or said she was going to.

HR also seems to feel that monitoring your enzymes and VL are important parts of that equation, but I'm not sure I'm in complete agreement there.

As long as you're relatively confident that you have little or no liver damage, then I wouldn't be overly concerned about viral load or even enzymes.

Many of us, including myself have had viral load fluctuate wildly, and no studies I'm aware of show that viral load at any point in time correlates to liver damage.

For example, my viral load was 30 million IU/ml around five years ago. Four years later (without treatment) it was 16,000 IU/ml. Then three months later it was 1.5 million IU/ml. Using VL as a guide, one could have made the case that I should have treated when VL was 30 million, but actually waiting until my viral load was 1.5 million probably gave me a better shot at SVR even though that was not the reason why I waited.  

Liver enzymes as well can be deceiving. ALT 100 for example, is not twice as bad as ALT 50. It's not linear. So unless your enzymes become sharply elevated -- as mine did per previous post -- then not sure how much useful data you can get from liver enzyme fluctuations. But I'm sure HR has opinions here as well.

Be well.

-- Jim

[jmjm530]

Second paragraph in my last post should read in part ---

"For me, Fibrosure seems one way as long as you stay around FO. My understanding is that in the mid-range F2-F3, *Fibrosure* becomes less useful as screening tool.

[jmjm530]

The following paragraph in previous post should be omitted as it doesn't really track:

"As long as you're relatively confident that you have little or no liver damage, then I wouldn't be overly concerned about viral load or even enzymes."

The overall point I was making is that viral load and liver enzyme activity don't necessarily reflect liver damage. Liver damage is best measured by needle biopsy, fibroscan and perhaps Fibrosure within certain limits. There are also a number of other blood markers -- some older like platelet count and alt/ast ratio -- and some newer like Hydaluronic acid, YKL-40 (chondrex) and TIMP-1, but that's another story.

-- Jim

[jmjm530]

last sentence was a little jumbled but the point was that in order to determine which is more accurate, the biopsy itself would have to be scrutinized more closely to remove the variables of absolute sample size, relative sample size and pathologist bias. Currently, the trials simply have a single pathologist review whatever slide the patient submits.

[sfbaygirl]

I just read my recent labs 11/1. My ALT is 37 and AST 21 In March I was 87/62 pre-tx. Does having higher ALT mean anything? So what I am hearing, Goof, is maybe being up where we are is normal for us? Dunno. I hope so!

[Kalio1]

Yes, I agree. I would say that is my "baseline" reading. Sine then, even though my enzymes have "normalized" on tx, they are still in the 20 to high 30 range. Not sure if that is from tx, now my normal reading or what. I do know I have cirrhosis but I don't know my fibrosis score, so Fibroscan seems an ideal tool for me to help determine if I should consider maintenance that my doctor suggests I do. Im not so sure I can/want to endure that but the Fibroscan can help with that decision. Im going to try to get it if I can qualify. Much easier to drive a few hours than fly all the way to Boston, though I do love the "other" coast very much and would enjoy a visit, I'd prefer to do it OFF tx!

[jmjm530]

I wouldn't read *anything* into those enzyme numbers while on treatment. My ALT bounced around a lot during tx from 16 to 40, but it wasn't until *after* treatment that they stablized at 18-20, or so. This is quite normal, it's the treatment drugs.

I agree, having a scan in your backyard is great if HR will have you. Plus he seems like a terrific guy not to mention extremely knowledgeable. Hey, I might fly out and join the party :)

I only mentioned Boston in the event you had to treat again. In that scenario, you might want to talk to someone like Dr. A. regarding re-treatment options regardless of Fibroscan. Remember, Fibroscan results are just one part of the puzzle. Give the same results to three different doctors and you might get three different opinions as how to proceed.

Be well.

-- Jim

[jmjm530]

The ratio is meaningless if your on treatment ,or if both are within "normal" range, per my previous post. At least that is how it was explained to me by my hepatologist.

[sfbaygirl]

The early bird catches the worm on the left coast. We can't have those right coasters get the upper hand on us. I went back to bed too, after checking up on those right ideas...

Pull out your AARP card, girl, we're heading off in search of knowledge. Like Ken Kesey. Too funny, I threw my first AARP card in the trash, after making sure it was wadded up so no one could see my name on it. Now they come so often, it is hard to hide them. I gave up. LOL Haven't kept one yet, but I was thinking it may be a good way to get discounts.

[sfbaygirl]

My doc never did any palpitating...my previous one did. You said you think the Fibroscan may not be a useful tool for F2-3. Why is this? Is it not as accurate with more liver damage? Did you get another biopsy after the Fibroscan?

[GoofyDad]

I already know of course that I have more-than-significant liver damage. Even I can feel the bugger poking it's head down from the ribcage when I take a deep breath, and comparing it to say calf's liver, it feels pretty firm to me. Interesing that once I do that little test, maybe every couple months, Mr Liver gets pretty agitated for a couple days and lets his presence be known.

Doc says just to wait it out as it's going to be a while before it gets better, if in fact it's going to head in that direction.

I have a little bit of the jitters going as I'm switching jobs and I have a choice of one that's a job I'm pationate about, but with less benefits, including lack of long term dis. and life ins vs. a job that I would like with better pay and benefits. If I took the pationate one, which I pretty much have, well I'll performing without a net. But I can't live life as though I have one foot in the grave, right?

[GoofyDad]

What's the deal on ast/alt ratios and assessment of damage? Just got a new LFT panel done and ALT is still running twice AST. It's 43 on a revised scale with a high threshold of 65 (new assay) so it's within range but plenty of room to go lower. Maybe it's just symtomatic of a high mileage liver, like an old Rambler wagon belching blue smoke and bouncing down an old country road....

[Kalio1]

One thing I took note of was hepresearcher saying enzymes should not be over 25 as my doctor says the same thing. Makes you wonder why the "normal" range goes up to the 60's. Do you think it could be a med. or something you are taking causing it? Are ou exercising a lot more? Maybe your "normal" is higher by nature? Just guessing here. The new pipeline" anti fibrotic drugs are looking very promising so don't get discouraged!

I tracked back some and found that prior to the outpatient procedure I think I got this from, my ALT/AST's were in the 10's. Dang. Even in the acute phase mine didn't go over 150 or so. Makes me wonder if that isn't a bad sign somehow.

It's infuriating and confusing. I hope overall you are feeling better and better and getting back into the swing of things. Stay warm up there, I heard it was getting down into the 30's.

[jmjm530]

My understanding is that if AST is higher than ALT it's suggestive of more serious damage. *Suggestive* not conclusive. However, if both enzymes are within "normal" range, then it doesn't matter is AST is higher. Of course that brings up the topic exactly what is "normal". For example, my enzymes were "normal" at times during the last 35 years when I had HCV. Normal in the sense that they were in the normal lab range, like maybe ALT 45. However, now that I'm SVR, my ALT is like 18. So which is really normal? I'd say 18 is normal and the 45 was elevated for me. My lastest enzymes were something like ALT 18, AST 20. Because these are definitely in the normal range, the fact that my AST/ALT ratio is over 1 doesn't mean anything. At least according to my doctor. I think if you google "ALT/AST" ratio you'll find more but not sure if they take into account the two types of "normals" as discussed.

Bottom Fibroscan and needle biopsy will give you the best indications, with blood markers including ALT/AST ratio, platelets, INR, etc. following the pack. Also don't discount some good palpatating fingers attached to a hepatologist.

In a funny way, that's really what the Fibroscan device is. Instead of detecting liver stiffness by palpitating, it does so by a form of ultrasound connected to a computer that translates the "stiffness" into a number that is then correlated with a Fibrosis stage. Full circle, heh :)

All the best,

-- Jim

[jmjm530]

If your enzymes were in the teens before contracting Hep C, then that's probably your normal range, regardless of what the lab range is -- assuming of course that we're comparing lab results from the same lab, etc. Since I've got infected over 35 years ago, I couldn't find any pre-Hep enzyme levels, but as stated above, my post tx enzynme are in the high teens or low 20's compared to several "normal" readings during the past 30 years that never got lower than say ALT 40. That said, not sure exactly how much can be inferred from "normal" enzymes but in the higher range say ALT 40 *after* treatment as Goofy may have. Does it reflect undue activity or is it related to the treatment drugs? Don't think this has been studied very much. Where I come out is that it's hard to tell too much from any one part of the pie, you really want to see all the pieces.

[jmjm530]

Rev: The non-invasive tests don't have the same accuracy as a biopsy, yet.
-------------------
Without debating which is more accurate, the funny thing is that Fibroscan's accuracy is being studied/validated based on how well it correlates with liver biopsy results on the same patient. For arguments sake, let's say Fibroscan ends up correlating 85% (I'm just picking a number) across the Fibrosis board after the thousands upon thousands of patient's data (liver biopsy and Fibroscan) is fed into the computer from the current FDA trial.

So the question is this -- again assuming the correlation turns out to be 85% -- is Fibroscan 85% as accurate as needle biospy in measuring fibrosis OR is liver biopsy 85% as accurate as Fibroscan? Unless the biopsy results that the can is being compared to were also compared to multiple biopsy readings on the same patient, and reviewed by multiple pathologists -- which is not how the trials are being run -- then we will never know which is really more accurate. Hope this makes sense.

-- Jim