PCR Test sensitivity

[HepCinLA]

If you achieved 'undetectable' PCR test result, what has been the sensitivity level of the viral load test (<650, <50, <5?)??

I just found out that the lab my hospital is using only goes down to 29.  Is this sensitive enough?

[alagirl]

It is my opinion that you should ask for the viral load test again.  If you had gotten it right after becoming infected it is possible, but not probable, that you could have been positive but not yet with a high enough level to give you a viral load.  IF THAT IS TRUE, this is your best time to treat, with acute treaters having the best shot (almost 100%) of cure by treating early in a window a few weeks to a few months after contracting HCV.  If the second PCR test comes out the same way, with no viral load, then you are one of the small percentage who beat this off by yourself and THAT news in and of itself it just absolutely the BEST THING IN THE WORLD!!!!  If you do go that route and it turns out the same way the next time, come back and tell us because that would be really exciting news!

Also, how can I put this delicately?  Oh forget that.  This involves your LIVER, and you only have one.  VERY FEW of us believe what lightseeker is espousing here, that you can be cured from HCV (that is, to achieve SVR from treatment - measured by valid and sensitive tests) and then still have the virus lurking around somewhere to come back and grab you in its grubby clutches.  I think that I might not be putting to fine a point on it when I say that some of us MAY even feel that people who test positive after conclusive SVR may have indeed practiced a behavior that has caused them to be newly infected with HCV again, as opposed to having their old HCV come up to haunt them.

Also, it has not been lost on me that many people of late who try to tell others that SVR isn't permanent are either pro-holistic to the exlusion to Western medicine, or alternately, they cannot, or purport not to be able to use the standard treatments.  

I personally have to wonder if part of the reason they want others to feel that same way is because its easier to explain to themselves why they didn't reach SVR if they can indict Western medicine in general.  And some people are afraid of the hepc treatment.  And I won't lie to you, its difficult.  But it's a  hell of a lot easier than the side effects of hepc.

I feel such people would be better served looking at the newer medical options available, because many more people, even with other concommitmant difficult illnesses, can treat now.  People who would have been excluded before.  I AM a SUCCESSFUL treater for instance, and there is little chance I would have been allowed to treat even a few years ago due to some pre-existing issues.

[FlGuy]

I think Double Dose just found a soul mate.

[jmjm530]

Light: Here is something interesting I heard from my doctor a few weeks ago, He stated that even with a non dectable virus load, the virus is never gone, EVER, all this work and it could come back someday when you least expect it. This virus has no cure, only a time delayed course of action, like being in remission from cancer.
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Studies exist to show that SVR is durable close to 100% if UND for one year post treatment. "All this work and it could come back someday when you least expect it" is extremely misleading as only a few documented cases have been reported out of thousands. And in those cases, other factors may have been involved such as strong immuno-suppresive drugs. My doctor and many other doctors call SVR a "cure" because at least in the clinical sense, that is exactly what it is -- i.e. SVR is durable, in most cases reverses or at least contains fibrosis progression and decreases your chances of liver cancer.

BTW have you had a liver biopsy? There's nothing wrong with watching and waiting, but you need to know how much liver damage you have in order to make "waiting" an intelligent choice. Your 450,000 viral load means nothing. You can have significant liver damage with a low viral load like yours -- or little liver damage with a very high viral load. In other words, viral load has nothing to do with liver damage and hopefully your doctor has told you.

-- Jim

[LightSeeker]

Here is something interesting I heard from my doctor a few weeks ago, He stated that even with a non dectable virus load, the virus is never gone, EVER, all this work and it could come back someday when you least expect it. This virus has no cure, only a time delayed course of action, like being in remission from cancer.  For me that was the shock of my life, I have been unable to get treatment because of many other physical factors surrounding my liver, But with this recent information, what reason do I ever have of doing Interferon. I wish everyone would quit lying to us, making us believe the virus is really gone. I think the doctors just want us to spend billions supporting the medical drugs that damn near kill us. Actually, his words seemed to be the most honest answer I have ever gotten on a subject that I could never get an honest answer for previously. I am going full bore on my alternative formula because, if the virus is never really gone, then at least I am at the best possible position I could be in, no side effects and no more injections. I already do insulin shots. This doctor specializes in many areas and I really could tell he was being serious with me. I am convinced he speaks the truth, so when it comes to viral loads, remember any number under 400,000 is considered very low. After 28 years of infection and decades of past drug addiction I am doing pretty good at 450,000. Might have even been the Milk Thistle and other herbs that kept it low too, along with diet changes and no drinking. For now I join in the fight to bring more valid information to the table and get the two federal bills passed so we can all get the proper information surrounding this disease. If you want to join me in this quest-email me at wildkat608@aol for more up to date information.

[GoofyDad]

Most likely the first test established that you show positive for antibodies - meaning you were exposed to the virus at some point in your like, and that it got past you first line of immune defense. Since you have no active virus now - it sounds like your immune system was able to beat the hep c into submission - meaning it did on it own what the shots are designed to help it do.

You just hit the grand poobah lottery of life!!!  Congratulations - go celebrate!

[suzonne]

i was diagnosed 8 weeks ago with hep c, went back to the doctor today for results of all the blood work and he said that it was not detected, i m very confused he said i did not need to take the shots. they did the hcv, rna, pcr, qn tests  whatever all that is, i just wanna know does this mean its gone and i have nothing to worry about? cuz he told to me just go get tested again in about a year. Can hep c just go away or is it that it just lays dormant and i would need to have it checked periodically

[avidreader]

Thanks for all the good info. I'm off on vacation and plan to come back all primed to fight the good fight.I tilt windmills for a living by developing housing for mentally ill and/or addicted chronically homeless adults so this ought to be a piece of cake although I find it is always harder to advocate for oneself. I appreciate the insight of your experience.

Tracy

[avidreader]

Sorry--the above post was meant for you. Riba brain fog big time. It will be interesting to see if I can make it to the airport in one piece tomorrow and remember my ID and my meds--I figure anything else I can buy if I forget it ;-)

[cuteus]

when I found out I still had detectable hcv at wk 12, I reclassifeid myself as a slow responder, my initial low VL did nothing to benefit as suggested by some studies.  I started asking tnguy and revenire for studies to make my case for extension. Unfortunately I did not get another PCR until wk 26, so I had to use that PCR as the starting point for extension.
I found this study, extremely small sample but all genotype ones, and there weren't many studies addressing only geno ones.
http://www.natap.org/2003/may/053103_1.htm (an Israeli study)
I also printed the TERAVIC-4 study (done in Spain, my ancestry) and the theory was also confirmed in studies in Germany:
http://www.hepcnet.net/boards/medsforum/index.cgi?noframes%3Bread=587,  and as a sideline in several studies. I only printed the ones I mentioned, you might find more.
There is no much emphasis on doing long treatment research, it seems the focus is on dosages and the current standard tx length.
As I said in another thread, when you are looking to make a point you will grasp at any study that might confirm your theory. I was grasping for SVR and extension, so I searched and read forums and personal experiences were added to the medical data I had accumulated. I still had to fight my GI to let me go longer, but he finally agreed. Almost a yr later and HCV is still gone. WOuld I have achieved SVR with 48 wks? maybe. Did I want to chance a relapse? NO!
good luck on your quest

[v eggie dip]

I would love to keep in touch with you, you can email me at beth.***@****

Best of luck next week

beth

[johnisme]

Hello, saw your post about needing patient assistance with procrit. Not sure if this will help, but this is a site for assistance for people who can"t afford it.....http://www.procritline.com/ on the right side of this site under patient assistance you can click on it for the form. They also have a number you can call for help... The number is 1-800-553-3851.... Hope this helps some.... Take care and good luck to you.


                John

[go-girl]

Thanx crush, will go to site as soon as I leave he

Hi dip, my fourth test came back low again and my glucose a little high. @%#@@ Hep nurse called and said Schering called them and said if my GP would fax them down @ New Jersey that I have been stable on synthroid that they would okay it and I could possibly start tx next week. I hope "Macob" posts on here to tell me how I might be able to get EPREX/procrit  help, she was able to get it, she lives in B.C. as well. the pharmacist called Pharmacare here for me to see if I could get special authority from my doctor for cheaper or free, they said no, i think she said you can't get it with extended either, I may be wrong,a lot of things were going through my head. If I get anemic guess I will be SOL I don't have $1800 a month. She mentioned going through the Anemia Institute, I googled it but didn't get anywhere, I hope she responds to my post.

Am anxious to hear about your herb program, take care

[friole]

Aubbie - absolutely wonderful news Love those odds 80-90%. How sensitive was your test - do you know?

Crushed - the Copies vs IU --You are right that all the tests are so different.  I just try to use IU's and identify them as such.  Wish everyone would identify in IU's, personally

Avid -- How odd - that you are going to take a trip with your sister.  Me too.  Mine is coming to my house in a week and we are going to take a little trip.  She is 17 years my junior, but we are close.  Since normally we do hiking, I had to tell her about the Hep C because I know I cannot do any of the really strenuous stuff (like hike the South Rim in Big Bend).  Still, we will go to a national or state park here in Texas and enjoy a few days of quality time.  I look forward to it.  Have a great time with your sis.

friole

[strator]

That is great news, both your results and attitude! Wish you well and hope you get some relief from the aches.
Don

[Aubbie]

SOUNDS like everyone is doing great!!!!! I am clearing and continue on for the year!i AM VERY EXCITED THAT MY mD SAYS 80 TO 90 % CHANCE OF CLEARING NOW WHERE BEFORE it was 40% to 50%!!!! I am excited and my 2nd mom is too, my MD clinic NPS are excited and administation at clinic showed care, but my kids are not excited (oh they say good) but this is a REALLLLY good thing!!!!! I'm so excited and I know the Lord is with Me ! I will do something special maybe! I am not going down on Rebetol and my RBC AND WBC went up a little.  HGB still low and I have to say the worst part of TX is energy and extreme bone pain and muscle weakness!!!  Lungs are affected too but I AM THANKFUL THAT I AM BLESSED TO HAVE THIS TX! I COULD NOT have made it withouy this site , I read alot and dont get on too much plus I have been shopping alot , I got backpay from Disability and I have to ride motorized car at stores but at Mall I just sit and rest and walk a little and rest. WEEK 17 yesterday. I continue on and thinkiny POSITIVE is the answer aloong with you inteligent supporters and GOD BLESS ALL! I see jmjm is taking a break from us gotta go read it and my advice is THINK POSITIVE!!!!!!!!!! Aubbie

[v eggie dip]

you have a low viral load...even though your a genotype 1 you have a better start with a low viral load...

did you get the answers back yet about the thyroid issues?

*dip*

[crushed]

try this

http://janis7hepc.com/Viral_Loads.htm

[go-girl]

WOW I am so confused about all the #'s thrown out about PCR, haven't a clue. I had better start understanading as I may start tx next week. It seems different labs read differently, am I EVEN using the right terminology?????? what are copies? maybe some one can put me onto a site where it is put in laymens terms so I can dig it,DAH

On my labwork a few weeks ago while prepping to go into a study, one of my results said HCV-RNA TAQMAN 903000 IU/ml I take it this is my viral load....

What does this mean
HCV GENOTYPING,TRUGENE
HCV GENO 1b (that is my type,what does this below indicate)

HCV GENOTYPE EXCLUSION MET?        Clinically Significant
HCV EX?       No                   YES*       No

THANX

[avidreader]

Thanks for the note. Yes--I am going to request a 16 week PCR. I figure I'm going to have to fight with insurance to extend treatment and for their (and more importantly my) sake I don't want to extend treatment for one day longer then I have to. I'm off to Europe next week for a whirlwind vacation with my sister who lives in South Yorkshire. We realized recently that it has been over 24 years since the two of us have spent quality time together--all of our visits over the years have involved kids and family vacations and husbands, boyfriends and lovers so we decided it was time to do a girls road trip. We've cashed in millions of frequent flier miles and are going to London to see the Producers and then on to Paris to be good to ourselves, then back to England and then home for me. All in 8 days--this will be a true test of my stamina. I figure I'll start dealing with the possibility of increasing doses, getting a 16 week PCR and negotiating a treatment extension when I get back. Hurrah. We will definitely have to keep track of each other!

[friole]

Avid -- I hope you are catching this post.  I was so glad DD came in and said that yes you absolutely do have a 2 -log drop.  I have been trying to get the time all day to do the same.  
You and me and Jaroman were not quite clear at 12, but we are all doing very well.  I will be very interested in all of our future PCR's.   I tried to get an order from my GI today for a 16 week PCR but he is leaving town and told the nurse to tell me to have the hemotologist order it.  So I still think I can get one done.  Are you going to request a 16 or 20 week?  I think it is a good idea to see exactly when we do clear.

NY -  whoopie.  You betcha that is a 2 log drop.  What an outstanding number 411 is.  Go hug your mama and do the hootchie coo.

wMich - Lee, since you were clear at the 615 test, I would absolutely ask for the more sensitive test next time.  Crush posted the Quest websight.  Let me see if I can do the same for LabCorp:

http://www.labcorp.com/cgi-bin/search.cgi?q=hepatitis+c&ps=10

BTW when I first started posting I asked if everyone on the board was speaking in copies or international units.  I never did get an answer, but the international units seem to be the more acceptable standard.  On LabCorps test which are done at NGI (National Genetics Institute) copies times 40% (or .4) give you international units.

friole

[crushed]

yea the whole copies/mL vs IU/mL had me confused as well. i at first thought everything would be in copies because for the non doctor types (ie: me) i can grasp that but the arbitrary IU where you need a factor just seems cumbersome. i suppose for the medical community the IU works for their needs of determining log drop but for those of us infected we want to count every one of the little buggers. FWIW every test i've seen was in IU/mL and something i read recently indicated that this was the accepted standard of reporting.

[avidreader]

Thanks for your reply. I figured my post would be lost in all of the board angst and I almost missed your post trying to dodge and weave the bickering. You are, or course right. I think I was in a heavy RIBA fog this morning when my doctors office called. Now I'm feeling pretty silly and math challenged. I am thinking along the same lines as you--I am already taking 1200 of RIBA with minimal side effects, but I'm a too big for my britches 200# 5'8" female (although I think the Pegasys diet is beginning to work its' wonders.) So--I've been thinking of asking my doc to up the RIBA--I went up on my own to 1400 mgs for 2 weeks with no big increase in sides. The interferon won't be so easy--I'm on the premeasured Pegasys and with my HMO they probably aren't going to approve anything out of the ordinary. Which is why I'm already concerned about getting them to approve treatment extension. I'm going to have to start hitting up my doctor and nurse friends to scrounge me up some free Pegasys I think--I absolutely don't want to stop at 48 weeks just to relapse and start over. I just have a feeling the my HMO has a cookie cutter one size fits all approach to treatment. We shall see, but thank you for being such a cheerleader--I needed that!

[wMich]

Thanx much to everyone for the info, links and encouragement. I'm definitely putting aside some $$ for one of the sensitive tests at the 24 week point.  - Lee

[DoubleDose]

Best of luck to you, and have fun in London!!!!  My kind of trip!  Arm yourself with lots of research articles regarding the far lower odds of relapse by extending therapy for type 1's who do not clear by 12 weeks but do by 24 weeks.  The increased odds of your attaining the SVR should far outweigh the insurer's prospect of having to pay for another long tx for you, or long term maintenance therapy.  Also, most highly experienced doctors will readily go to bat for their patients on this issue, and usually wrestle the insurance company into submission pretty quickly.
Plus, you just cannot afford to undergo a successful therapy, only to experience a relapse because it was not for a long enough period.

Your doctor should be able to track down some compelling statistics regarding extended tx for this sort of situation.  
You are truly on your way to SVR....just keep pushing...and don't take 'no' for an answer.  I did 72 weeks of high-dose Peg-Intron, with full dose Riba, and constant Procrit...and am now over two years SVR, after ending therapy!  I had relapsed one time prior, after a 14 month tx, which was not extended for the appropriate duration!

Have a 'jolly good time' on your trip!

DoubleDose