Viral load: what does it really mean?

[mike716]

I just got back my first pre-therapy baseline PCR of viral load. It was some kind of weird test that can only measure loads of between 600 and 850,000 IU/mL (I can figure why a PCR couldn´t detect less than 600, but why wouldn´t it be able to detect over 850k?)

Anyway, does anyone out there have any idea what 850,000 IU/mL is saying?

Mike

[jmjm530]

Sounds like they ordered the wrong test. A pre-treatment test ideally should have a wider  dynamic range meaning it can detect virons over 850,000 IU/ml. I'm assuming then that your results reads >850,000 IU/ml? If so, you could have any viral load from 851,000 to over 50 million IU/ml. "Heptimax" (Quest Diagnositics) for example, has a dynamic range of between 5 IU/ml and 50 IU/ml. You might ask for that test as a pre-tx baseline.

-- Jim

[jmjm530]

That should have read in part: ""Heptimax" (Quest Diagnositics) for example, has a dynamic range of between 5 IU/ml and 50 MILLION IU/ml

[bandman54]

Mike,

here is a good website with lots of info concerning viral loads etc.
I had some questions for the nurse ...on this site.
look under bandman postings.

She is real good about answering questions.

http://hcvsupport.org/forum/index.php/board,49.0.html

bandman

[Trish77]

They either used the wrong test or that's the only test their labs have available to them.  You'll want to find out which scenario is at play.

Did you get this test in Argentina?    It means that they used a test that doesn't  measure a viral load any higher than that and mine meets or exceeds the upper limit.  If your PCR reads >850,000 IU/ml as Jim suspects, then your lab used a test that only measures up to that 850,000 upper limit.  

My original PCR came back as >1.3 mil IU/ml. What I learned for myself is that, in Canada, the 1.3 mil IU/ml is the highest limit any labs in Canada test to. (That's supposed to be changing soon.)  I was in the middle of searching for getting my own PCR including going to the U.S. when I landed in a drug trial and then got an accurate PCR  as it was done in the U.S. and turns out my viral load was 2.1 mil IU/ml.

Having said that ... viral load doesn't directly co-relate with liver damage.  Where viral load comes into play is that it's been shown that you have better response outcomes with treatment if you start with a lower viral load.  Some people delay treatment for a time to bring their viral load down first, depending how high it is.  

It's important to have an accurate baseline prior to starting treatment.  If / when you get to that place, you'll want an accurate baseline for that, therefore a test that measures at a broad range as Jim has mentioned.  Or maybe you want to know that now.  Up to you and your "need to know" factor.

While studies use a cut-off of 600,000 as the difference between high and low, outside of a study context, 850,000 IU/ml is actually moderate.  However, if your test IS >850,000 IU/ml, all you really know is that you're higher than that but not by how much.  

Hope that helps.

Trish

[CockSparrow]

There is nothing wrong with the tests you had done.
What is supposed to happen is once the upper limit is reached the sample is supposed to be diluted and tested again to give a more accurate VL. This second step wasnt done probably to save a few$. I had the same thing occur to me last Tx.

Newer PCR test have a mind blowing dynamic ranges and can detect up to 69-100 million depending on the test.

HVL is HVL so in a way it doesnt matter what your true VL is.
Well it does as it makes it a little difficult to work out whether you have a 2 log drop but other than that it doesnt matter.
CS

[Trish77]

CS, I went on that little quest.  When I was told the government would only fund on PCR a year, I set out to get my own PCR at my own cost, wanting an accurate baseline to begin tx with.  Then I found out that there are only two labs in Canada that do PCR's, both are public health labs and both only deal with tests that go to a maximum upper limit of 1.3 mil IU/ml.  They are supposed to be introducing tests with a higher upper limit within months I was told .. I don't know yet if they have .. but at that time, it was NOT available to me and I would have had to go to the U.S. to get an accurate VL.  I was wondering if the same situation exists in Argentina, that they are limited to the PCR testing available to them, or if they did simply use the wrong test.  

I agree with you .. VL doesn't matter UNTIL you are preparing for treatment and then you want an accurate baseline so you know whether you've truly had that 2 log drop and that is exactly why I wanted the accurate test.  I was getting ready to start treatment and I wanted the accurate baseline so I'd know if I really had a two log drop or no.

On personal speculation .. I do wonder if VL matters in other ways.  While the impact on the liver may not directly co-relate with VL, there are a number of other health issues that seem to be an offshoot of having HCV and I wonder how much VL plays a part in those.  

[CockSparrow]

>On personal speculation .. I do wonder if VL matters in other ways.  While the impact >on the liver may not directly co-relate with VL, there are a number of other health >issues that seem to be an offshoot of having HCV and I wonder how much VL plays a >part in those.

So do I. I have a feeling that the higher the VL the more symptoms.

Until recently Australia only had tests that went up to 800K. Sux doesnt it.
Now when I get to use a test that goes up to 69,000,000 (COBAS Taqman) it comes back at 600K.

So I now wonder what my pre Tx VL actually was, but hey not much i can do about it now.
CS.

[Trish77]

I would have thought the higher the viral load, the more symptoms also, except that doesn't happen with liver disease so perhaps it doesn't really apply to other ailments either.  Perhaps that's as much random as is the extent of the liver damage and also has to do with one's own health profile.  I've been healthy as the proverbial horse my whole life  and it goes on both sides of my family.  I seem to be one of the few people here that doesn't have any other illnesses or ailments aside from my HCV.  Anyway...I'd rather we all had NO viral load with no little virions causing their havoc where they will.

CS:  Until recently Australia only had tests that went up to 800K. Sux doesnt it.
Now when I get to use a test that goes up to 69,000,000 (COBAS Taqman) it comes back at 600K.
----------------------------------------------------------------------
I'm sorry, I'm not following.  Your viral load currently sits at 600K?  

This test, this COBAS Taqman, this is now available in Australia?

Thanks, CS.

Trish

[CockSparrow]

Sorry I tend to talk in IT speak. K=1000
Before my last Tx my VL was >800,000. No Idea how much greater.
The VL test I had done Last month came back at 622,000.
Now I had been taking HR supps for a month so not sure how much influence they had.

Yeh Aust now has the Roche COBAS Taqman assay. Range 43-69,000,000IU.
Guess the other one was COBAS Amplicor but not sure. Anyway its range is somewhat larger.

I certainly feel better than before my last Tx, no more fatigue and insomnia so something is different and VL is maybe one of them.

CS

[Trish77]

"I certainly feel better than before my last Tx, no more so something is different and VL is maybe one of them. "

Actually, that is an excellent point.  Same sort of thing I see people post-tx posting all the time.  Interesting.  Thanks for the perspective.

Trish

[Trish77]

"Sorry I tend to talk in IT speak. K=1000 "

Actually.. I got that without blinking.  600K is naturally to me 600,000.  Just wasn't sure if you were meaning that your viral load is inaccurate because of the test or just what you meant.

Incidentally... isn't K 1064? ;->  
(I know...I know )

[CockSparrow]

> Trish isn't K 1064?
Nah K=1024. I was going to mention that. Then thought it will just confuse things.
Actually it can mean both 1000 & 1024.

I didnt care at the time that my my VL only came back >800K.
Wish i knew its true figure now.

CS

[Trish77]

Argh!  of course it's 1024 .. I can't believe I said that. :(  

As for your VL .. I'm sorry it went that way for you.  We can't turn back the clock .. there's only moving ahead.  You did the best you could with what you knew and you'll do the same going forward.  It's all we can do, yes?  

Take care.

Trish

[CockSparrow]

I can even tell you why its 1024.
There are 256 possible combinations with 8 bits.
1 bit = on or off
8 bits = 1 byte
4 bytes = 1 word
1 word = 1024 (256 x 4)
Computer lession over

Yeh hindsight is a wonderful thing aint it.
CS

[mike716]

Thank you all for the VERY informative discussion on viral load. I will check out the websites suggested and also see if there are any private labs in Buenos Aires that have one of the better tests mentioned, like COBAS Taqman or Heptimax.

I agree that the lab that did my viral load test probably could have diluted the sample and run it again, and they didn´t do that because of the added expense. My hospital is run by accountants, there´s no doubt about that :[

Re viral load ranges, I saw somewhere on a website that 0 - 1 million is considered low, 1 million to five million is medium, amd above 5 million is high. Does that make sense to anyone?

Here´s a full transcription of my lab result - in Spanish, naturally - for what it´s worth:

===============================================
CUANTIFICACION DEL VIRUS DE LA HEPATITIS C
(Carga Viral HCV, Amplicor)
Metodo: Cuantificacion por el metodo "HCV Monitor - Roche",
a traves de la aplificacion de un segmento de 244bp de la region 5 No Codificante. Primers externos - KY80/KY78 biotinilados.

RESULTADO:

CONCENTRACION: Mayor de 850,000 UI/mL

Limite de deteccion: mayor o igual a 600 UI/mL.
Rango de linealidad: 600 a 850,000 UI/mL.
============================================

Can´t tell if it´s Monitor, Roche, Amplicor or what.

I´m pretty frustrated about this result because I asked right off, when I was first diagnosed HCV+, for a cuantitative test and they did just the Yes/No PCR. Sorta tricked me (so as not to say "lied to me"). Now I wait another month and I get this "more than..." routine. So I am not a happy camper at the moment.

Sure, maybe viral load doesn´t correlate with progression of fibrosis/cirrhosis, but I believe in my case it will mean the difference between antiviral therapy or not. At 64, with HCV 1b, if my viral load is very high I don´t have much of a chance. OTOH, if it´s really just 850k, maybe it´s worth trying.

Anyway, thanks again to all of you for your help. This forum is a life saver. You are the best.

Mike

[willing]

good chance mh may zap the link
http://****.com
but from the report it looks like  they used  Roche's amplicor monitor, probably the most commonly used test world-wide until the emphasis on more sensitive tests.

As far as tx planning goes,  the low/high vl cutoff as a predictor of success has moved down to about 400,00 in recent studies. Not knowing how much you're over 850,000 may be annoying but it's not information that would guide any decision. If you do start tx, you'll want a baseline test with a higher range so you can measure VL decline in the early stages - an important predictor.

[mike716]

} As far as tx planning goes,  the low/high vl cutoff as a predictor of success has moved
} down to about 400,00 in recent studies.

What does that mean, exactly? Since I´ve got more than 400,000, in my case a lot more apparently, my chances are real bad?

Isn´t viral laod used as part of the info to guide the decision on tx?

What baseline tests can you suggest when starting tx?

Thanks. I´m new to all this and there's a lot to learn.

Mike

[willing]

I'm just headed out so don't have time to dig out references  - will try to post some later. In a nutshell, your pre-tx VL tells you nothing about the stage of damage/progression. The virus itself does no significant damage to liver cells but  reproduces at such a phenomenal rate (much faster than HIV/HBV) that what gets measured in a blood vial is a measure of how effective your immune response was at eliminating the fire-hose of virus spewing out of the liver. The lower the VL the better your immune system is doing on its own, and, once reinforcements arrive from the drugs the more likely it'll succeed. So high/low VL tells you nothing about how much collagen is building up in your liver (which is a side effect of the  ongoing inflammation there). However a low VL (and the magic number seems to be 400,000) correlates with successful outcome.  Regarding the baseline test, calling the lab you have access to and checking their test menu is probably the best approach. The Roche amplicor monitor kit does not require the huge automated COBAS machine, which may be one reason they used it.  They should be able to increase the range by just doing a dilution : rerun the test same pcr  in a 1/2 dilution of your serum.

[beatrice57]

Normally VL is not necessarily providing the info to guide the decision of tx or not- but the actual liver damage - and here we go from the less intrusive ones like Acti- Fibrotest, Fibroscan to intrusive ones like biopsies and laprascopies (je ne sais pas si ceci se dit en anglais,!)
But in the end it will be your decision
In Israel they have now developed a sort of a breath test, which is supposed to give you indication of the stage your liver is in ... and  Medex
www.****.com
www.****.com
interesting but not quite here yet
take good care of yourself Béatrice

[lolitriqui]

I will translate this for you:

Quantification of hepatits C virus
( HCV Viral Load, Amplicor)
Method: Quantification using the "HCV Monitor-Roche" method through the amplification of a 244 bp (base pairs) segment of the non-coding region number 5. External primers- KY80/KY78

RESULT
Concentration: More than 850 000 IU/ml (international units/ml)
Detection threshold: more or equal to 600 IU/ml
Lianeality range: 600 to 850 000 IU/ml

Basically this means that your viral load through RNA amplification is more than 850000 which means it is very high, higher than what the method can quantify. Just bear in mind that viral load is not a very important predictor of response to treatment.


..... my wife translated; she is from argentina and a physician; you can go for the better tests to any better hospital in buenos aires; she worked at sanatorio otamendi, it's privat and very fancy; you'll get good tests there but she doesn't know what they cost; it's more for the upper class; you can try though, it's right across the street from las clinicas,  and the univ. of buenos aires school of medicine; intersection acuenaga/cordoba if you go by cab; ciao good luck

[lolitriqui]

I will translate this for you:

Quantification of hepatits C virus
( HCV Viral Load, Amplicor)
Method: Quantification using the "HCV Monitor-Roche" method through the amplification of a 244 bp (base pairs) segment of the non-coding region number 5. External primers- KY80/KY78

RESULT
Concentration: More than 850 000 IU/ml (international units/ml)
Detection threshold: more or equal to 600 IU/ml
Lianeality range: 600 to 850 000 IU/ml

Basically this means that your viral load through RNA amplification is more than 850000 which means it is very high, higher than what the method can quantify. Just bear in mind that viral load is not a very important predictor of response to treatment.


..... my wife translated; she is from argentina and a physician; you can go for the better tests to any better hospital in buenos aires; she worked at sanatorio otamendi, it's privat and very fancy; you'll get good tests there but she doesn't know what they cost; it's more for the upper class; you can try though, it's right across the street from las clinicas,  and the univ. of buenos aires school of medicine; intersection acuenaga/cordoba if you go by cab; ciao good luck

[Trish77]

"Isn´t viral laod used as part of the info to guide the decision on tx? "

No.  It has been by some doctors but it shouldn't be.  My first doctor used viral load as his ONLY guide to suggest tx for me and that is an inaccurate foundation upon which to base treatment.  I didn't know any better at the time, this was all new to me and my first doc had me reeling out of his office with numbers like >1.3mil IU/ml and that I needed treatment .. and I thought I was done for too.  Only I found out I wasn't.  So perhaps you're feeling like I did when I got my first PCR results.

My reason for going for a second opinion was BECAUSE he wanted me to treat based on viral load alone and that told me he didn't know as much as I would have liked from my treating doctor.  When I explained to my next doctor at the university hospital I now get treated out of that my first doc wanted me to treat without a biopsy based on viral load, his eyebrows immediately went up and so did those of the other doctor in the room and they just looked at each other without saying anything.  And we moved on.  So those docs weren't basing any treatment on viral load.  In fact .. they based treatment more on how ready I was myself for treatment.  They quizzed me on that and they were willing to go ahead as a result.

You are not "done for" if you have a high viral load.  Viral load is NOT an indicator of liver damage.  I think alot of us could post what our viral loads are compared to what our biopsy results turned out to be and that would tell a great deal.  My doc was very concerned about my viral load and I turned out to be only Stage 1 Grade 1 liver damage.  Interesting, eh?

To have an accurate baseline is important when you DO decide to treat.  How well you're responding is based on how much your viral load is dropping .. and if you don't know where you started, how do you know if you dropped 1 log or 2 logs or by how much.  It puts a big question mark on everything.  So, to me, an accurate baseline is very important.  

I could dig up studies because I know that adds validity as it does to me too .. but I'm a bit tired and I just wanted to add in personal experience and knowledge gained along the way for now.

I hope this helps, Mike.  Hang in there.

Trish

[medicmommy]

Some of the newest research I've come across is finding that the viral load seems to directly correspond with the "state of the immune system"...Meaning, when the immune system takes a hit, the viral load increases, briefly giving the hep c a chance to get a toe hold...when the immune system recovers, it fights the hep c back into a corner...so, if the immune system remains weak, the hep c's damage accelerates...
Otherwise, the viral load just remains a number to measure treatment responses to...
Hope this helps...                                                              ~Melinda

[willing]

here's a couple of background references re the earlier points:

"Prediction of treatment outcome in patients with chronic hepatitis C: significance of baseline parameters and viral dynamics during therapy."
http://www.ncbi.nlm.nih.gov/pubmed/12601358

and
"Managing chronic hepatitis C in the difficult-to-treat patient."
http://www.ncbi.nlm.nih.gov/pubmed/18036096

pubmed ids 12601358  and 18036096 in case the moronic mh link-censoring filter   strikes. Full text for the latter, which includes a description of other prognostic factors such as age, race and fibrosis  is available on the medscape site (you have to register).

[willing]

PS - also, if you read further, you'll quickly confirm that the test's 850,000 cutoff is not a high value in the overall distribution of pre-tx VLs - values in the millions are very common.

[jmjm530]

In your case I do not see viral load as an important  factor determining a treatment decision.

While it's true that a low viral load (that definition varies study to study) produces somewhat better SVR results, most people who have HCV (and therefore most people who treat) do not have low pre-tx viral loads. The other point is that high pre-tx viral loads deliver about the same SVR results as very high pre-tx viral loads. In other words, if you have 3 million or 30 million pre-tx viral load, your chances of SVR are about the same. Most important point is that viral load does not correlate with liver damage.

So in wrapping it all up -- I would make the tx decision based pretty much on liver damage as determined by your upcoming biopsy. If you have significant liver damage, then you have to deal with it one way or another regardless of viral load. If you don't have significant liver damage then you have time to wait, again regardless of viral load.

As far as the tests used, it would be more helpful to get a pre-tx viral load test -- esp a baseline test right before tx -- that can measure viral load much higher than the test you used. That way you could track initial viral response better if you so choose.  Once treatment starts, it's important to use a test that goes below 600 IU/ml. Ideally you want to go down to 5 or 10 IU/ml. The more sensitive tests will correlate better with study data determining RVR, EVR, etc.

All the best,

-- Jim

[Trish77]

"Some of the newest research I've come across is finding that the viral load seems to directly correspond with the "state of the immune system"...Meaning, when the immune system takes a hit, the viral load increases, briefly giving the hep c a chance to get a toe hold...when the immune system recovers, it fights the hep c back into a corner...so, if the immune system remains weak, the hep c's damage accelerates... "

If you have links to this information, I'd be very interested in reading this, thanks.

Trish

[jmjm530]

""Some of the newest research I've come across is finding that the viral load seems to directly correspond with the "state of the immune system"...Meaning, when the immune system takes a hit, the viral load increases, briefly giving the hep c a chance to get a toe hold...
===================
This sounds like a reasonable explanation of why those with pre-tx viral loads seem to have better SVR results. In fact, I've speculated that one could in theory try and time treatment with periods of low pre-tx viral load (i.e. better immune activity). That said, like Trish, I'd be interested in any supporting study data.


"...when the immune system recovers, it fights the hep c back into a corner...so, if the immune system remains weak, the hep c's damage accelerates... "
-------------------------------
Vrial load can fluctuate wildly, so not sure how helpful this is, assuming it's true. Also interested in any supporting study data.

[Mikkimoe]

So then why is it that when I take my Enbrel shots (A Biogenetic TNF blocker for RA) that my viral load is always lower the day after the shot and higher the day before. (I thought Enbrel would weaken the immune system but guess not).  I am chartng this per the trial that stated Enbrel may be a good 3rd component - Better SVR and lower sx (although my sx are pretty bad).

Here's what I have so far - S/B UND now just waiting on the results from last weeks PCR  although it was the day before Enbrel - so we'll see.

Date           VL
Jan 25-08 - 41,540 after Enbrel
Feb 6-08 - 3,730,000   before Enbrel
Feb 26-08 - 677,000   after Enbrel
Mar 27-08 - 2,240,000   before Enbrel  Started tx April 5th
April 17-08 - 203    after Enbrel
April 29th - probably UND - waiting results - but day before Enbrel

Question for you - The Tagman that they use at UCI only goes to the low end (200)
Should I be concerned with getting one more sensitive with the numbers I have so far?
I am considering stpping Riba at 4 months per another trial that showed no dif in 2B's to stay on peg 6 mo and rib 4 mo.

Thanks,

Mikki

[DragonTamer]

I start tx in June...still dazed and confused and still struggling  to learn all the medical lingo from you guys, to follow all the forums!  My VL, I was recently told, was 3 million 700 thousand.    3,700,000   from the sounds of these conversations, it does sound like I am in for quite  a battle!  However I am GT 2b...do you think I have a better chance of clearing because of this, even with such a high VL?     Are there any 2bers out there who had  such a high VL to start with?  

My doc said it was high but had seen much much higher...    Can any one suggest what I really should be doing BEFORE TX...eating not eating, taking  that will boost my immune sysyem "safely".  I used to take immune boosting suplements like Astragulus...   but I am so afarid to take anything now that might mess up the treatment.  All my doctor said was " start training like you are going to be in the olympics!"   So should I be eating a lot of carbs then!!!!????
This high VL thing really has me frightened now. :(

Thanks for any info you can give.
Dragon tamer

[Mikkimoe]

Hi - did you read my post right before yours? I am a 2b had a high VL and am well on my way to being clear - don't sweat it - 2b is a cake walk.

There are many posts on what you ask just plug it into the search feature.


Study - learn,

Good luck

[DragonTamer]

Thanks....   I did read it but was confused about but what is "Enbrel"?  Is this another form of Tx you are doing?  I think you talked of doing a trial....  I am just going the good old fashioned way. :)    Again I am trying to study and learn the lingo... there is just so much of it!  sigh.

Thanks will check out the search feature.

Good luck to you too!  Thanks for the positive energy...I pray it is a piece of cake!  But there are so many others who have not had that experience, I am trying to stay positive!
I know that is key.

[DragonTamer]

Wow did my home work on Enbrel and found out on my own about Enbrel, as you suggested....copied this below from a long list of concerns....  But I believe we all react differently to meds...but as a newbie this sounds to risky for me and I will stick with the old and true for now.  I am so glad you have had a positive experience with this. Apparently from what I read there are a myriad of lawyers waiting in the wings for someone to sue....as they are want to do!!!  So I did not want to give them  that free advertising here! I'm sure you have checked this all out before starting it and hopefully your doctor discussed the risks. I am just too too new to have the courage I guess to try something so new. I was looking into newer tx such as this but I could not find anything that said it was safer than traditional tx. I'm just frightened right now perhaps I wil get a little bolder the more I learn and live with it!
Keep up the positive!


Enbrel Side Effects
Enbrel side effects have included reports of infection leading to death in some instances. Entering the U.S. market in 1998, Enbrel patients suffered Enbrel side effects so serious that it led the company to change Enbrel side effects labeling. In addition, Enbrel manufacturer sent a Dear Doctor letter to physicians warning of the serious and deadly Enbrel side effects that could occur.

Symptoms of Enbrel side effects that may signal infection is present are fever, bruising, bleeding, or paleness. If these Enbrel side effects are experienced, the patient should consult a physician immediately. It is more common for patients with a higher susceptibility to infection to experience Enbrel side effects. Other Enbrel side effects involve serious nervous system disorders like multiple sclerosis, seizures, and inflammation of the nerves of the eyes.

If you have suffered from Enbrel side effects and would like to learn your legal rights and options, please contact us.

[Mikkimoe]

Enbrel is just for us Severe RA folks - been on it 4 years and it was a miricle - got out of my wheelchair and went back to riding my horses - If you want to read ugly diclaimers check out the Peg nd the Riba - Yikes

At any rate I have several pages of questions that I made for my first apts. I'll copy some below - the folks on this site are real savy and can help you out.

Also just do as much research as possible - lot's of good links on this site and here are a few and more.

http://www.ncbi.nlm.nih.gov/sites/entrez/  PUBMED for current research

http://www.clinicaltrials.gov/  search for medical trials

http://www.hcvadvocate.org support and political organization

www.hepatitisc.org.au

http://www.beincharge.com/bic/application

www.janis7hepc.com  good GENERAL education/disability info

http://clinicaloptions.com/Hepatitis.aspx  free to join updates on medical research

http://www.nlm.nih.gov/services/ctresults.html several government links

http://www.hivandhepatitis.com/hep_c/hepc_news.html   info for both diseases

General Questions first visit

1. Geno Type – Stage (0 to 4) – Grade (0 to 4)?

2. Viral Load - 2 Log Drop)
G or GT: Genotype
GI: Gastroenterologist
HCV or Hep C: Hepatitis C Virus
HVL: High Viral Load (≥400,000 IU) (≥600,000 IU) (≥800,000 IU)
Hx: History
ITT: Intent to Treat
IU: International Unit (1 IU = 2.5 VL Copies apx )
LVL: Low Viral Load (<400,000 IU)
PCR: Polymerase Chain Reaction
RNA: RiboNucleic Acid
RT-PCR: Reverse Transcription-Polymerase Chain Reaction
RVR: Rapid Virological Response (4 Week PCR – UND )
Rx: Prescription
SOC: Standard of Care
SVR: Sustained Virological Response (UND 6 Months post TX end)
Sx: Symptoms/Side Effects
Tx: Treatment, Therapy (can also mean Transplant)
UND: Undetectable Viral Load
VL: Viral Load
VR: Virological Response


Hope this helps - good luck

[DragonTamer]

(((((Thanks)))))  for all of this!!!!   Had no Idea you were in that rough of shape... so glad to hear you are up and riding again!!!  A miracle indeed!!   These disclaimers are so bloddy confusing, you are right. You can find something negative about everything.
When it comes down to it we have to live with our choices. My doc is not offereing any other choice to me right now...and I do like and trust him... so my adventure begins in June!   Thanks so much for being a great help and inspiration.

Take care and keep riding girl!!!!  :)

[Mikkimoe]

Hi there - just noticed that the questions were not attached above...hmm

Here they are - just some notes I had to my self for the doc.
General Questions first visit

1. Geno Type – Stage (0 to 4) – Grade (0 to 4)?

2. Viral Load - < 2 mil easier to treat

3. Any chance of HCC – Carcinoma?

4. What other test will need to be done?

5. New Treatments Coming up – Stat-C, Protese and polymerase inhibitors?

• Type of Interferon (Peglated etc) Ribavirin?
• Complications and at what stages?
• Will you prescribe rescue drugs should I develop hemolytic anemia or low white cells?  neupogen and procrit
• How often will I be getting  PCRs (ideally with 2b I had week 1-2-4 -6 8 - then every month.
• Will you prescribe weight based riba or mfg recommended dosage? (you'll want weight based)
• What if I can’t tolerate the tx – what are the guidelines to stop tx?

6. Current Med Interactions?

7. Diet – Protien, Iron, Multivitamines, Acidolphidus etc. Teas, Coffee, water

8. Dr. – How many HepC patients do you treat now? What are complications? Contact if emergency. Does he recommend a Hepatologist?

9. Insurance – does it cover meds? Support Groups?

10. Get copies of all labs?

11.  Current Symptoms: fill in your own...do you need to see GP for symptoms?
• Fatigue
• Headaches – migraines
• No appetite, food no taste
• Problems with eyes – dry or running varied vision
• Insomnia
• IBS
• Night sweats – chills
• Joint and muscle pain
• Heart pounding – palpitations
• Tinnitus

I think your past this point - but anyway there is statistics that prove there is a much better SVR rate if you go with a Hepatologist.

Take Care,

mikki

[mike716]

Thanks, everyone, for all the info on viral load vs. tx and liver disease. Crikey, but this HepC is complicated and confusing.

The idea about serial dilutions using a low-range test like the Roche Amplicor Montior is excellent. I've emailed my GP at the hospital with the request to re-do the PCR, this time with dilutions. I mean, what the heck, they've done two PCRs on me, told me both times they were quantitative, and I still don't know my viral load which personally I find it very hard to believe doesn't matter. How can it not matter how many millions of virus are in your blood, if only because they are occupying the immune system when it should be doing other things? Also, because it looks like part of what damages the liver is the immune response to the infected hepatocytes. Ain't nobody gonna tell yours truly that the number of infected hepatocytes don't matter, cause that's jes plumb loco,

Anyway, I haven´t read all the posts to this thread yet, didn't have time because I was starving myself and doing laxatives all weekend in prep for the colonoscopy/endoscopy this morning (perfect results: no esophageal varices, and the colon problem due to diverticulitis and not apparently liver-involved), so I'll probably post again here later.

Cheers to all!

Mike

[mike716]

Hi, lolitriqui. Thanks for the info re Sanatorio Otamendi. I'll check it out.

But please tell your wife this: A lab in Rosario named CIBIC S.A., which administers Fibrotest in Argentina for the French inventers of the test, is refusing it to me because my hospital in Buenos Aires doesn´t have it on their list of approved procedures, My hospital doesnt approve any procedures that cant be done by my hospital, because of the costs. And Cibic won't take the order from another doctor, apparently for fear of my hospital.

So if I go to sanatorio Otamendi, what do I have to do, lie about being a patient at the Italian Hospital? Please ask your wife.

That's what it's like here in Argentina, see? Everyone's afraid of everyone else. Like it was a police state.

Mike

[willing]

congratulation on your good endoscopy results. I go in for my pre-screen Weds. and am hoping for something not too alarming. Trish has done such an outstanding job about nagging you on the bx there's not much to add but, with all its faults it's still the best indicator of where things are. Also, you may already know all this, but collecting the specimen and reading the resulting slides are two entirely separate activities. For the former you want somebody who will collect a large enough sample without fragmenting it and without hitting something else in the process. Once you have slides, they're part of your permanent record and you can easily get more than one pathologist's opinion about amount of collagen, level of inflammation, bridging, etc.

Re - the hcv kinetics, I know it's counterintuitive. A standard post here is from someone who has just found out their VL is in the millions and now wants a referral for a good funeral home.  You may want to look at
http://www.ncbi.nlm.nih.gov/pubmed/9756471
the original hcv kinetics paper, or some of the many follow ons.

Here's one at medscape with full access
http://www.medscape.com/viewarticle/543530_1

Probably the single most striking point is "the daily production rate of the virus was estimated to be 10**12 virions" (from the above review) - ie the virus is so remarkably prolific that any measurement is basically only an indicator of the effectiveness of suppression.

[Marcia2202]

Congrats on your endoscopy results. It must be a burden off your shoulders. Go and get the biopsy done. :-) and good luck with it.

I finally got the referral to the hep, so I'm happy, but waiting. Really want to get the biopsy done, but again.... waiting.

All the best for now,  Marcia

[lolitriqui]

well, i remember as i first went to do some checkups in argentina; i lived 5 years in mexico before i went, so i spoke the language somewhat; argentinians are in general not afraid of anything as far as i can tell; it sounds like more a communication problem; also their medical system is based on the french system, which means they don't get paid for unnecessary procedures; much like mayoclinic does it here in the states they generally don't try to hussle up procedures you don't need; however medicine is very good there; el italiano is a very good hospital; my wife did her cardio rotations there during her residency; sanatorio otamendi is private and you can get whatever you want; it is very upscale so the best docs in argentina go work there; i will show your post to my senora later today, she is working right now; talk to you later...
ciao

[lolitriqui]

sorry mike, still couldn't get her to the computer; NYC .... very busy....

[mike716]

Thanks for the info on biopsies. I'll keep it in mind. I hope they get a good, big specimen, and that the guy who looks at the slides isn´t myopic.

I had some better news today: Fist, I went back over to the university teaching hospital this morning, collared the chief hepatologist at the outpatient clinic, and got into a heated discussion with him about biopsy vs. other tests. After showing him the pics on FibroTC he gave me the order for the tomography. Then I got an email from the radiology secretary at my hospital (a very sweet person who has been at bat for me) to the effect that she talked them into doing the tomography for me if I pay for it. Only thing she left out was the cost . So, if I can get the folks in Sevilla to get moving, it looks like I might get my FibroTC after all.

Now, now....don't get all p****d off at me, I'm gonna do the biopsy, too, just as soon as my hepatologist wakes up.

M.

[mike716]

I've kinda calmed down since Monday. I love everyone today, even the Argentines.

By the way, since you guys are apparently New Yorkers like me, do you happen to be part of the New York tango scene? I was a member of that clan for a few years myself, back in 2000-2003.

M.

[lolitriqui]

love argentines, yeah i know, it's hard... i have a few in the house....no tango, except when i am sitting at the dinner table; i like to listen more; check out www.la2x4.com.ar 24/7 tango radio buenos aires; my wife though always looking for something tango; she goes to her dad's house and translates them from lumfardo to spanish or something like that; can you believe that??? my wife says it is difficult to understand your problems long distance; just listen to what your doctors recommend; hope you got osde or some insurance, thats the one i had there; she thinks you sound like a real easy patiente or paciencia; now i don't remember what she said; you travelled the world, right, you know what i mean; anyway, i took my interf. shot sixteen pills and went to the dentist today who drilled me two crowns... i am a little dilirious and sort of can't believe what i hear when i ask my mirrow, mirrow on the wall who is the fairest one of all and he says not you you bald guy anymore... ciao  if you need more stuff translated, please feel free to post it and we'll translate, as long as it aint the bible....

[mike716]

I am very into tango myself, as a matter of fact, and am told that I have a real argentine dance "style", unlike most of the New York tangueros (but, then, flattery was always very effective on me :] ). Tell your missus that I go to the Salon Canning and Niño Bien milongas and that I take classes from Alberto Catalá at a gimansio in Belgrano.

FYI, I'm bilingual in Spanish, having lived first for six years in Buenos Aires in the 'seventies when I was a TV journalist, then five years in Spain, and now back in Bs As since 2003. (If you think I'm making this stuff up about being bilingual, like some Americans do, check out an article I published last year in the quarterly journal of the Argentine Institute for Economic Development, at http://www.iade.org.ar/uploads/c87bbfe5-4e61-efb5.pdf . And here's another at http://www.globalizacion.org/desarrollo/PerkinsConfesionSicaroEconomico.htm

Thanks for the translation, though [big grin].

I don't have any insurance. That's the problem. I'm in the Hospital Italiano Plan de Salud. That's all. I'm stuck there, unless I want to pay out for private treatment, which I may have to do if my hospital keeps screwing up.

Listen, forget all this grabage, I'm so sorry to hear you're feeling bad with the tx. I feel like crying every time I read the posts here. You're all such brave people...and I'm such a coward, I'm afraid to even go for a biopsy...

Mike

[lolitriqui]

no, no, believe it all; no problem.... you crack me up, you sound like the maniak i am....i meant if you need any medical mumbojumbo translation... let me know; have fun down there; nothing a bife de lomo can't cure
ciao

[mike716]

My Argentine girlfriend is cooking a big steak for me this evening, and I will make a toast to you and your lady with a small glass of malbec red.

Mike