BTW the strategy is to remain UND as long as possible so that even if a relapse occurs then the time until the new drugs are available will be that much sooner. My wishful thinking is the new drugs will be available by the end of 2014.
I have been on this INT + Riba treatment for 53 weeks now. I think I'm at the point that I can't even imagine what it must feel like to be off it, and more importantly free of this thing after 30 years, 4 treatments and a transplant.
I'm doing 18 months frijole. I started mid-May 2012. Doc said if I can tolerate go forward so it was more on me to decide. He knows that me off treatment with VL is a rather bad scenario. I went from perfectly good liver to stage 2 in about 9 months before treatment began.
Since having went UND and feeling better then being UND and on treatment is preferable to being off and with VL. I certainly feel better despite the usual INF sides. Secondly they already have sunk a very large amount of $$$ in my case and remaining on treatment is not much compared to that. Lastly it's pretty common to put transplant patients with HCV on maintenance INF to reduce VL in an attempt to mitigate damage.
The VL tests I've been taking are good down to 18. I will get the labcorp test next time. I wonder how many people who test negative down with the test (sensitivity down to 2) are SVR.
regards, David
"The reason I ask all this is after being on "the treatment" for a year now with 5 months to go, man,... Plus I'm better off on the treatment than off (if not SVR) because the HCV was damaging my liver very quickly. I've been UND since week 8 ."
I am a little confused. Are you going to do 17 months of treatment? If so, how did you get any doctor to sign off on that? You have been UND for 48 weeks already? I think the French are doing quite a few studies that include cirrhotics. I think they have some kind of law that trials must include some of the worst cases - more of a real population - not just individuals that have livers in good shape. This means their death rate and their SVR rates may be less than those shown in other studies.
I always got QuantaSure VL tests run when I was treating. I did like the comfort level of knowing I was clear to 2. My first treatment in 2005-6 I also requested them. I had a VL of 40 at week 12 and that helped me to understand my relapse. Had I had the standard testing with a minimum read of 50, I would have thought I was UND at 12 weeks and would have been shocked at the relapse. Getting the Quanta Sure did backfire on me once. I had that test before I treated and was over the top. It only reads up to 2million - so I really don't know what my pre-treatment VL was.
If you have been UND for so long, I cannot see the merit of having more than one test run at the same time.
frijole
Thanks all. I will request this one to be done. If you read the thread by the Dr. he makes all the same logical arguments that I would make for testing and tapering. Basically in my case it would be worse to still have the virus and be off the meds rather than be UND and on the meds.
I did read the report pooh. Not much new information there or rather it mostly follows the same results as non-liver-transplant patients except that OLT (liver tranplant) patients are much more likely to have adverse reactions. Well, I've made it through over a year with a few hiccups (the 12 weeks on Incivek being the worst). I'm in a kinda of steady state right now but always closely monitoring WBC and platelets. But the SVR rates patient specifics in the study that could be compared to my specific situation was pretty much what I've seen all along - anywhere from a 60% to 90% success rate. I didn't quite achieve an eRVR so it's a little gray. My doctor was very cautions since I was one of the first ones to try triple. Therefore I was on low dosages of everything but still almost achieved eRVR (90% SVR rate and might even stop treatment if I had been perfectly eRVR but like I say the downside of not being SVR for me is great thus this hand-wringing.
I called labcorp and the test (140369) for people w/o insurance is about $750 but "more for people with insurance." I have insurance but I'm thinking along the lines of what medicalreseacher said and buying several or more simultaneous tests (to increase statistically certainty) which I'm sure my insurance probably wouldn't go for.
If you read the thread medical research participated in it's fascinating.
http://www.medhelp.org/posts/Hepatitis-C/Hepatitis-Researcher-or-Anyone-one-else-with-a-good-idea/show/393732 The tapering and talking about the test and rationale for more test is very interesting.
regards, David
Have you read this report, David. You probably have, but if not, it is interesting.
http://www.hivandhepatitis.com/hepatitis-c/hepatitis-c-topics/hcv-treatment/4104-easl-2013-triple-therapy-for-hepatitis-c-is-effective-after-liver-transplantation-but-comes-with-side-effects
David...I agree with Bali . The 14609 has the same sesitivity (2) and indicates "Pos." or Neg" seeing as you are UND.. prev.
As bali mentions ..they run the PCR first and if below the given parameter then cont. with the Qual.test.
Given you are already UND .and have been for some time this test is extremely sensitive and all that is needed.
Best to you..
Will
You really don`t need a Quantative test since you are already UND
since wk8.
The same test you are mentioning is available as a Qualitative test.
NGI HCV UltraQual # 140609
Mean Sensitivity level of 2.4 to 4.1 HCV genome copies/mL (1.0 to 1.6 International Units/mL)
www.ngi.com/downloads/hcv_ultraqual.pdf
It costs less and is faster approx 7 days.
The QuantaSure.can take twice as long.
When they do the Quantasure they run less sensitive PCR first
you don`t need that you are already UND.
Plus the UltraQual will say HCV Not Detetected when negative
kind of nice to read .....
Just did this it as my 2 year post tx.
The NGI UltraQual is THE most sensitive and reliable qualitative PCR
available. The only thing that comes close is TMA (Heptimax) but
that one is prone for false positives.
Cheers
b
I completely understand what you mean about wondering if now might be the time to have a more sensitive PCR done. I wad the COBAS -TaqMan Test that detects:
"HCV RNA levels as low as 43 international units (IU) per mL, and can detect as positive more than 95% of samples containing as few as 13.9 IU/mL (in plasma) and 10.5 IU/ml (in serum) and as high as 69,000,000 IU/mL in a single specimen."
and around week 40 or 42 I requested the Quantasure you mentioned. It might have been a mental thing but I vow I did not rest easy until I had it. Like you I just needed some type of assurance this is all working.
I looked at my EOBs and it is a costlier test but my insurance covered it. It was talking the NP into it that was the challenge.
Anyway, I say go for it if you have the chance~
Keep us posted and best of luck :)
I agree the labcorp NGI Quatasure test is the way to go. I used it several times. After a long treatment I wanted to be sure the dragon was gone! If that test says you are UND you can rest assured you are.
FYI that person was not a quack. "Hepatitisresearcher" as he was known here did invent the NGI Quanture. He is a scientist & MD. I think he posted here about 20 times back in 2007/2008.
At the time he was one of only 5 locations in the USA with the "experimental" Fibroscan.
I wish he was still around. He was a wealth of knowledge with Hepatitis
Best of luck and wishing you a <2 on the Quant test.
Also not a quack, follow the link
"I couldn't tell if the guy responding was a quack or not (said he worked at Labcorp and developed the test and then quit posting). He sounded like he new what he was talking about but only posted a few times."
http://www.medhelp.org/health_pages/Hepatitis/HepResearcher-doctor-on-various-topics/show/38?cid=64
Hepatitis C Virus (HCV), Quantitative, PCR, NGI QuantaSure™
Test Number: 140639
Limitations:
The NGI QuantaSure™ assay has a quantitative range of 2 to 2,000,000 IU/mL or 5 to 5,000,000 copies/mL.
Follow the link and type the test # in to the search to see it
https://www.labcorp.com/wps/portal/provider/testmenu