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24 week UND!!! Are PCR's unreliable?
Good Morning Vietnam!
I got 21 week PCR yesterday and called the dr. I read to me UND, but wasn't sure b/c of the language. Of course I am happy of this result, but it is so hard to understand.
The comments in parens are the 12 week PCR;
Hep C RNA >1.9 (8) (this said Not Qnt last time)/
<1.9 log IU (same as before)
*(8) Viral load is Result for HCV RNA is LESS Than 75 IU/ML
...Results below the limit of detection (1.9log IU/mL) will be reported as >1.9 log IU/mL. Results between 1.9 and 2.3 log IU/mL (75 to 200 IU/mL) will be reported as "HCV RNA detected below the limit of quantitation."
Would you say this means I am UND? Why the Not Qnt last time? Ultrasound says fatty liver versus cirrhosis, this is scary as he said it could be one or the other.
The GI told me that PCR's are SO unreliable that he doesn't put too much stake in them. Interesting! He says he was one of the first Dr's in the world to do PCR's and has done them by hand. Claims that the same blood sample can change from hour to hour as far as VL. If this is the case why do we put our lives in the reports of PCR's. I asked about getting a more sensitive test or TMA etc. He said they are all the same. He will do a Qualitative next time...I really thought this was something to discuss here. If PCR's are so unreliable and fluxuate, then why do we say someone that has a breakthough with a few copies stop tx?
I got 21 week PCR yesterday and called the dr. I read to me UND, but wasn't sure b/c of the language. Of course I am happy of this result, but it is so hard to understand.
The comments in parens are the 12 week PCR;
Hep C RNA >1.9 (8) (this said Not Qnt last time)/
<1.9 log IU (same as before)
*(8) Viral load is Result for HCV RNA is LESS Than 75 IU/ML
...Results below the limit of detection (1.9log IU/mL) will be reported as >1.9 log IU/mL. Results between 1.9 and 2.3 log IU/mL (75 to 200 IU/mL) will be reported as "HCV RNA detected below the limit of quantitation."
Would you say this means I am UND? Why the Not Qnt last time? Ultrasound says fatty liver versus cirrhosis, this is scary as he said it could be one or the other.
The GI told me that PCR's are SO unreliable that he doesn't put too much stake in them. Interesting! He says he was one of the first Dr's in the world to do PCR's and has done them by hand. Claims that the same blood sample can change from hour to hour as far as VL. If this is the case why do we put our lives in the reports of PCR's. I asked about getting a more sensitive test or TMA etc. He said they are all the same. He will do a Qualitative next time...I really thought this was something to discuss here. If PCR's are so unreliable and fluxuate, then why do we say someone that has a breakthough with a few copies stop tx?
Its a saga, that's for sure:-)
BX showed S3 fibrosis, so I was getting close to cirrosis. The little buggers had been munching away at my liver and doing some serious damage.
Timing is a wonderful thing. I'm at week 9 of the VX950 clinical trial. ALT and AST returned to low normal within 4 weeks of starting tx. HGB is down to 10.4 and both WBC and PLT are marginal at around 1/2 of my basline levels. SX are almost tolerable, but I'm in awe of anyone who stands up for a second or third round of soc!! Still, the enzymes are suggesting that something good is happening. We will know for sure at week 20.
BX showed S3 fibrosis, so I was getting close to cirrosis. The little buggers had been munching away at my liver and doing some serious damage.
Timing is a wonderful thing. I'm at week 9 of the VX950 clinical trial. ALT and AST returned to low normal within 4 weeks of starting tx. HGB is down to 10.4 and both WBC and PLT are marginal at around 1/2 of my basline levels. SX are almost tolerable, but I'm in awe of anyone who stands up for a second or third round of soc!! Still, the enzymes are suggesting that something good is happening. We will know for sure at week 20.
Well, good to hear you are tx and doing well.
Please keep us all informed as you continue. Good talking to you. And.....I will be starting tx hopefully real soon, next month some time...please jump in any of my posts to offer advice....don't be shy lol I need all the help i can get.
wishing you the best!!!!
Please keep us all informed as you continue. Good talking to you. And.....I will be starting tx hopefully real soon, next month some time...please jump in any of my posts to offer advice....don't be shy lol I need all the help i can get.
wishing you the best!!!!
There are other VX'ers who post here. I though that thy 'unblind' you at week 12 and give you some viral load info. No?
The VX950 trial protocol comprises four arms. Of these, arm D is dosed for 12 weeks with the combined SOC + VX-950. It is my understanding that the Arm D subjects will be unblinded at week 10, and that Arm A, B, & C subects will be unblinded at week 20.
Welcome to the forum. You aren't alone - there are plenty of us in here who had no idea we had this disease for 25 years or more. Personally I'm a stage 3 too - never had any symptoms that I am aware of.
I consider it lucky that we finally found out we had it so we could smash it into oblivion with meds. :)
I'm on week 53 of 72 so I'll be around here still for quite a while. The guys in here are the best and are always willing to hand hold.
It's great so see another VXer in here so we can see how it goes! It's exciting stuff!
(I am on regular old Peg/Riba just so I dont make it sound like I am another VXer by mistake).
Great luck to you!
I consider it lucky that we finally found out we had it so we could smash it into oblivion with meds. :)
I'm on week 53 of 72 so I'll be around here still for quite a while. The guys in here are the best and are always willing to hand hold.
It's great so see another VXer in here so we can see how it goes! It's exciting stuff!
(I am on regular old Peg/Riba just so I dont make it sound like I am another VXer by mistake).
Great luck to you!
"Why doesn't it stay dormant for 35 years in their system? And if it does stay dormant 35 years, maybe our spouses have it and it is undectable until 35 years after being exposed. If you know your spouse only 10 years and he is negative..maybe in 25 years it will be positive? God forbid."
the way it works so far, is that those that just found out at age 20, that they are positive, just lucked out that the drs are now testing for hep c. it has nothing to do with 'dormancy' since there is no such thing with hep c. The infection is chronic, your body is reacting to it, whether you notice it or not, whether your enzymes are normal or not. Those that say they had it for 35 yrs and now know about it, it is just that they recently were tested. If they would have had a hep c test 35 yrs ago, it would have been positive. It is about testing, not dormancy.
the way it works so far, is that those that just found out at age 20, that they are positive, just lucked out that the drs are now testing for hep c. it has nothing to do with 'dormancy' since there is no such thing with hep c. The infection is chronic, your body is reacting to it, whether you notice it or not, whether your enzymes are normal or not. Those that say they had it for 35 yrs and now know about it, it is just that they recently were tested. If they would have had a hep c test 35 yrs ago, it would have been positive. It is about testing, not dormancy.
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