Done, und, cured! Big congrats! Keep building that weight, and your health back up. I am so pleased you are free of this virus now. Hope you get to feeling 110% quick. How are you feeling? Aside from proud of all you have accomplished. You mentioned before you look better and your wgt is better, any other things you have noted? Do keep us posted please. I thank Gilead everyday for bringing epclusa into being, and for days just like these. C.
Tig said
Aug 14, 2017
Congrats, Mike! Undetected and end of treatment, that's two things that are music to our ears. Thanks for telling us about the first test results that were so confusing. It's not uncommon to have a detected result that's too low to quantify. That means the viral load is below the LLOQ or Lowest Level of Quantification but still picked up a viral straggler. As we discussed, by the time you found that out, your continued treatment had successfully destroyed those viral remnants and you were likely undetected. It's a mute point now however! Well done...
12 weeks after your end of treatment you should be scheduled for one last set of tests to confirm you remain undetected, at which time you are considered cured. We call it SVR12 or a sustained viral response, week 12 after end of treatment. I would start planning an even bigger celebration now!
WOOT!!
CodeNinja said
Aug 14, 2017
I ended up getting the results of that blood test sent to my house and it was much more thoroughly explained. They said it was still detected but below the level they can get an accurate count.
The good news is that I finished treatment and got one of the last blood test results and I am currently undetected! It's almost unreal that this finally happened. Especially considering that I am about to be off of my current insurance in a few months. Maybe they thought it would have been immoral to let someone go uninsured when the success rates are so high or maybe they just didn't know (even though they should have known)?
Either way, I learned a lot from this and feel like Andy Dufresne, crawled through 500 yards of **** and came out clean on the other side. Haha
Canuck said
Jul 27, 2017
Agree - I don't like the way they provide this lab info either (not how it is laid out nor the lack of clarity).
Just have to take it at "face" value.
Under heading of "RANGE" - (column 5) everything listed vertically under this, is what you should be, to be within "normal" limits
Under the heading of "VALUE" (column 3) - everything listed vertically under that, IS what YOUR results are.
So, on this page just ignore completely the words "not detected", that is just what "normal" is.
All I can glean from this, is that YOUR result IS - 1.08 IU/mL, and 1.08 IU/mL converts to 0.1 log as I figure it. (If your result had been expressed as 1.08 log then that would convert to about 10 copies/ml.)
Phone the lab and/or the doc to get them to elaborate (clearly) with better words than what this report provides you.
But we all agree, you have crashed your load to smitherines, you should party NOW! Your LFT's and bloods are wonderful, you are doing stupendously! C.
BTW- I also agree with Tig, it is always a surprize to still see differing labs using differing normal references ranges (especially for ALT's), you'd think we would have got it together by now, globally, with the "units" of measure and the "ranges"!
CodeNinja said
Jul 26, 2017
Thanks for clearing that up. That makes more sense now. I'm glad it means I am more than likely undetected as well! I will still ask for clarification with my doctor but it is still great news!
Tig said
Jul 26, 2017
I sure don't like the way they list the results of the viral load. First of all, the Undetected reference they have on both your test reports isn't your result. It's the normal reference for someone without the virus. Your results back in February with the Log of 6.45 IU/ml, puts you in a range of 2.75 to 3.0 Million viral copies. That's considered a medium level viral load, as compared to low or high. Doesn't matter what the viral load is these days, except some protocols will allow you a shorter duration (ie 8 weeks vs 12). Harvoni is one such protocol. But that is decided by your doctor and various other tests prior to starting Tx.
With that said, and without the inclusion of UNDETECTED adjacent to the Log number leaves much to be desired with your report. But I will tell you that from years of experience, the most recent result of <1.08 IU/ml log, does indicate you are below the level of quantification and most likely are indeed undetected. It's pretty rare these days to have that significant of a viral drop (below the LLOQ) and not be undetected. I would ask for better clarification from the lab and doctor on future tests and tell them why. See if you can get a paper copy of the actual test result from the lab for your records. I don't understand why they place that kind of information on a portal without it being completely clear. In a perfect world you know....
One other thing I noticed was the reference range of the ALT. Holy smokes, their normal says it can be anything <79! That should be something far less, but again, different labs have different reference ranges. They have been revising those reference ranges lately to bring them together around the globe, but there's still no set in stone standard. Look at this graphic and you'll get a better idea of what I mean. Doesn't matter in your case, because both your AST and ALT are stellar and quite good. I personally believe the lower the better and we see levels far below the lowest level indicated on these new revisions. JMHO
Reference Range(s) New and Revised: (19-25 IU/L [for women], 29-33 IU/L [for men]) New Guidelines
Don't be concerned with any of it, you're doing great and by now you're clear of the virus and now you're in the mop up stage. Now the important part of the process is length of treatment. You want to continue as prescribed so all tissues in your body are exposed to the drugs. They work their way into all the hidey holes in your system and root out the stragglers. It's how these treatments work. Some people get that first undetected result and think they can quit, WRONG! It's the overall exposure time that assures your success.
CodeNinja said
Jul 26, 2017
Canuck wrote:
Hi ninja,
When in doubt, there is no substitute for all eyes reading the same page to glean the nuances, key words, clues - is there any way you can post the report(s) in question (with personal identifying data removed)?
Aside from any additional words/numbers on your report ... does your report have any indication of what "machine/process" they used, words like: "Abbott ...", or it may show something like ..."COBAS AmpliPrep TaqMan"... Do your reports have any other words on them like these - indicating the test method they are using? Aside from showing the actual report as written, knowing the test process they used might reveal things more clearly. Just thinking. Regardless of how hard it is to interpret lab test results sometimes - just know YOU ARE doing super! - just as is destined and inevitable on the likes of epclusa - you have CRASHED your VL, your ALT/AST and bili look good (although we don't know for sure how "much" they crashed yet, only because those old ALT results are just not available to you yet) - I bet your ALT crashed too, right along with your VL - and all this at just 4 weeks!!!!!!!! You got it made. Don't fret. I must be like you, I like to get all the details figured out. C.
Here's an excerpted Q and A, written by Lucinda Porter in 2015 (talking about load tests).
Q: "What does this test mean?" This question is accompanied with test results such as:
A: Undetectable means that hepatitis C is gone, and presumably all gone. The confusion over this test is because viral load tests don't measure down to zero. Further, viral load tests vary. For instance, the Abbott RealTime HCV assay (assay is a fancy word for a test that determines and measure the ingredients of something) measures down to 12 IU/mL in a 0.5 mL sample of blood. This means that if you have 12 IU/ml of hepatitis C (HCV RNA) in your blood, the test will detect it and count it. If you have less than 12, the test might not see it, and if it does, it won't be able to count it.
Each test has its own detection range, some lower than others. The main thing is this:
"Not detected" = negative for hepatitis C
"Detected" or an actual number of how much HCV RNA you have = positive for hepatitis C
I cannot see any indication of where the tests came from but I have a screenshot of the test.
It doesn't specifically say that the "ZZ-GE-unk" column is the viral load count anywhere but it does make the most sense when considering the other lab results on the site have the correct log numbers for my viral load at that time.
Edit:
I also included the reason why this confused me. The other picture shows my log number from February and it also says "Not Detected". I'm pretty sure this is because I just signed up to their online portal and they just used my current status but it is kind of odd.
-- Edited by CodeNinja on Wednesday 26th of July 2017 07:58:59 PM
When in doubt, there is no substitute for all eyes reading the same page to glean the nuances, key words, clues - is there any way you can post the report(s) in question (with personal identifying data removed)?
Aside from any additional words/numbers on your report ... does your report have any indication of what "machine/process" they used, words like: "Abbott ...", or it may show something like ..."COBAS AmpliPrep TaqMan"... Do your reports have any other words on them like these - indicating the test method they are using? Aside from showing the actual report as written, knowing the test process they used might reveal things more clearly. Just thinking. Regardless of how hard it is to interpret lab test results sometimes - just know YOU ARE doing super! - just as is destined and inevitable on the likes of epclusa - you have CRASHED your VL, your ALT/AST and bili look good (although we don't know for sure how "much" they crashed yet, only because those old ALT results are just not available to you yet) - I bet your ALT crashed too, right along with your VL - and all this at just 4 weeks!!!!!!!! You got it made. Don't fret. I must be like you, I like to get all the details figured out. C.
Here's an excerpted Q and A, written by Lucinda Porter in 2015 (talking about load tests).
Q: "What does this test mean?" This question is accompanied with test results such as:
A: Undetectable means that hepatitis C is gone, and presumably all gone. The confusion over this test is because viral load tests don't measure down to zero. Further, viral load tests vary. For instance, the Abbott RealTime HCV assay (assay is a fancy word for a test that determines and measure the ingredients of something) measures down to 12 IU/mL in a 0.5 mL sample of blood. This means that if you have 12 IU/ml of hepatitis C (HCV RNA) in your blood, the test will detect it and count it. If you have less than 12, the test might not see it, and if it does, it won't be able to count it.
Each test has its own detection range, some lower than others. The main thing is this:
"Not detected" = negative for hepatitis C
"Detected" or an actual number of how much HCV RNA you have = positive for hepatitis C
CodeNinja said
Jul 25, 2017
There are no reference numbers, just the log but it does say "Not Detected" next to the log number. So I guess I am undetected then!
I just signed up for their online portal and requested my labs and it showed all of my previous labs. It was confusing me since every other lab had "Not Detected" next to ALL of the viral load log numbers (even when the log was around up around 6ish from a few months ago) but that could just be from them uploading the results and using the most recent detected status.
Tig said
Jul 25, 2017
Is there another reference number adjacent to the <1.08? That's the log number, which is another way they refer to the viral load. If you had a detectable viral load, it would say DETECTED. Some labs will simply list the undetected viral load with a < (less than) figure. Some labs list their results differently and without seeing the actual form, I can't tell you how yours documented it. If you are below the LLOQ or lowest level of quantification and it doesn't say DETECTED, you are indeed undetected, congratulations. Your AST/ALT/Bili numbers are fantastic!
LamontCranston said
Jul 25, 2017
CodeNinja wrote:
Still don't know ALT/ASTs. Do they get that from a blood test? If they do then I'm sure that'son the papers somewhere.
Im starting to feel a lot better and look a lot better as well. I gained a healthy amount of weight. I was around 135 lbs. When I started treatment which was the lowest I have been since high school. Now I'm at 160 which is good since I started to lose weight fast right before I started Epclusa. No more bags under my eyes. I can eat a lot more. I'm not sure if that was all from Hep C but it seems like it was at this point.
Oh, I am starting this week, I hope, and was hoping to Lose Some Weight...hehe. Congrats on your cure!
CodeNinja said
Jul 25, 2017
Only 9 days left before I'm finished!
I do have a question though. My last blood test from the beginning of July came in and my viral load said <1.08 IUnits/ml. I know that means it is less than 12 but is that just a fancy way of saying, "we're not exactly sure what your viral load is" or is that as low as they can accurately detect it?
I was also able to find my ALT/AST/Bili this time was 23/16/0.4
Canuck said
Jun 27, 2017
Hey Ninja,
That is just great! Love to hear that, that you've gained weight, look better! VERY welcome improvements! What a relief to feel better and to be able to eat better eh? Very good, as was your good news 4 week viral load crash. We are very lucky indeed to have drugs like epclusa nowadays.
Yes, appetite, and feeling unwell, with wgt. loss could all have been associated with your untreated HCV. Could very well have been directly in response to having an infection such a HCV, and/or indirectly associated with the degress of stress we go through before treatment. Either way, weight loss and those symptoms are very "not good" and not wanted, only makes all healing mattters harder. So - very excellent that you are eating well now and feeling improved!.
Stirve for the healthiest foods you can get/make, drink LOTS of water, and DO get your rest.
Yes, you could phone your doc's office and ask if they could fax or email you a copy of your "pre-treatment" assessment tests. Aside from viral load (VL) the HCV RNA test, other assesment tests would have included basic blood chemistry tests, "liver function tests" (LFT's) that include things like ALT/AST/ bilirubin, and other tests might likely have been AFP, fibro-test, things like CBC and renal function tests.
As well as asking for all copies of your pre-treatment tests, you can also ask for them to provide you with copies of the same tests they will repeat all through your treatment and after your cure.
Good to have your own copies at home, so you can see for yourself how high/or abnormal they were (before) , to see them normalize, and then to know what your "new normals" are, for future reference.
They may tell you how to get them "on-line", or, may tell you can only pick them up "in-person" at the docs office.
Glad you are looking better and feeling better! C.
CodeNinja said
Jun 27, 2017
Still don't know ALT/ASTs. Do they get that from a blood test? If they do then I'm sure that'son the papers somewhere.
Im starting to feel a lot better and look a lot better as well. I gained a healthy amount of weight. I was around 135 lbs. When I started treatment which was the lowest I have been since high school. Now I'm at 160 which is good since I started to lose weight fast right before I started Epclusa. No more bags under my eyes. I can eat a lot more. I'm not sure if that was all from Hep C but it seems like it was at this point.
Shadowfax said
Jun 24, 2017
Great news! Please keep us posted.
SF
Canuck said
Jun 23, 2017
Hey ninja,
What great news! Been wondering how you were making out on that wonder-drug called epclusa! Very, very well indeed we see. Only a couple of headaches, well, you must have been keeping well hydrated then. I am so glad you are feeling OK and responding so well. That seems to be the powerful nature of epclusa and these marvelous new DAA's - they are working so well to cure us nowadays - it is a whole new world for those of us lucky enough to get these new drugs, it was such a struggle before, with the old drugs (and that was not so very long ago!)
I count my lucky stars, every day, for my treatment with these new DAA's.
I am so pleased for you.
Did you happen to find out what some of your pre-treatment ALT/AST's were, and what your current ALT/AST is now? Just curious, they usually drop (crash) too, just like your VL has done, so well! C.
Tig said
Jun 22, 2017
Hey Mike,
That's outstanding! These are fast acting and most people respond quick to them. By now you are undetected and you should stay that way.
We're all surprised by the ease of treatment. Proper hydration and administration is the key to success. Get your dancing shoes polished!
JimmyK said
Jun 22, 2017
Welcome to the Forum Mike.
JimmyK
CodeNinja said
Jun 22, 2017
Hey everyone. About a month and a half through. Had a quantative blood test about 2 weeks ago and my numbers dropped from 2 million to 14!
No side effect besides a headache once or twice. I was pretty surprised how much happened in 45 days.
Tig said
Jun 4, 2017
Hi Patricia,
Welcome to the forum! I see you just started Harvoni this week. Can you do me a favor and start your own thread? This section was started by CodeNinja and his journey on Epclusa. We don't want to hijack his thread. You can start a new one in this section or use the Harvoni Train, (below) it's more of a community thread. You can also introduce yourself and tell us some history by starting a new post in the New Members section. There are colored links in my signature to help you set up your signature line. It helps us when replying.
Use our Home page and the search function. We have a lot of good information here. When you can, list your Genotype (1b) and any lab tests you have. Your signature line is a good place to put them. The most important part of this journey is to stay compliant, don't miss a dose and drink at least a gallon of water EVERY day! Stay rested, eat right and you'll be celebrating in no time!
Congratulations on starting your new treatment. Wishing you a great outcome.
Today is my 4th day.
CodeNinja said
May 13, 2017
Thanks everyone. So far I am just a bit tired which could even be from work all week so all is going great.
Observer said
May 13, 2017
Yay ninja,
Im so glad you're starting treatment! Water consumption will really help and you will feel so much better soon.
Let us know your before numbers so we can share the excitement when they drop
A
Jaggles said
May 13, 2017
Hi ninja on Wednesday I will be half way through my Epclusa treatment of 12 weeks. I felt the same, normally gagwith big tablets but so relieved when I got to take first one...and since they go down easily....my first one was quite an emotional moment and setting my alarm ringtone to remind me its 'Epclusa time'.....I still jump with excitement when it's that time....knowing I'm another day done. This treatment worked so quickly in terms of making me feel better...we are lucky...life is good ...and the lovely Canuck has been an inspiration to me ...well wishes xxx
Jaggles
Canuck said
May 13, 2017
Hey Ninja,
Good for you! On your way - day one! - first pill down the hatch! And, you started up your own "On Treatment" thread here too. That's great (all round).
Yes, they ARE big pills, have to be, to contain that much magic! hee hee Good you were prepared and are dousing yourself with lots of water.
So you are familiar with the sof/vel trials (me too), I scoured them quite a bit as that is how i got my treatment, via a sof/vel/vox trial. We are lucky indeed to have received epclusa.
In your spare time you should click on the red link (in Tig's signature line) and explore "how to" do up your own signature line - it is real helpful when we start a thread, it makes it easy for info at a glance and helps conversations.
Your sig. line, perhaps, might go something like ....
... Male, 25 yrs old, GT 2b, HCV at least 4 years?, Dx 2013?, 3 "normal"? U/S's since then, Biopsy 2016?/no fibroscan - so pre-treatment Fscore not known yet at this point. Pre-treatment LFT's (ALT/AST/Bili) not known yet at this point. Pre-treatment VL (aprox.) 5 or 6 million range. SOT - May 12, 2017: Epclusa 12 weeks ....
Do you know how many blood draws (for VL's and LFT's) you will be having through treatment, and when they will be? Probably, you will get a 4 week one, an "end of treatment" one (EOT) at twelve weeks, and then at 12 and 24 weeks post-treatment. Find out what what dates and how many VL's and blood draws you will be having done. Try to get your own copies of all the old and new blood tests results, even the biopsy and U/S results, so you have them for before and after comparisons, good info to have at your fingertips, through treatment and beyond.
Fscores (your approx. levels of fibrosis/or cirrhosis) can be derived from various blood tests (some of which you likely had, perhaps a "Fibrosure/Fibro-Test, Acti-Test, Apri, or one of the many that are similar), or via a fibroscan, or, perhaps your biopsy gave you an Fscore - that is why your old records/results are good to know, (baseline info - where you started from) so you can track where your Fscores were and their improvements over time/post-cure.
Same can be said of the value of knowing your prior (baseline) LFT's (ALT/AST/bili's, and more) - these too allow you to gauge your levels of liver function/dysfunctions, pre-treatment and compare to your body's response to treatment (during treatment) and then post.
Be brave, you'll soon see, you will breeze through this! C.
CodeNinja said
May 12, 2017
Hello everyone.
I just started treatment on Epclusa and took my first dose a few minutes ago. I have lots of water ready and I'm pretty excited and nervous. Those pills are huge and I've always been horrible at swallowing pills but it went down surprisingly easy. The shape probably helps with that along with my desire to get rid of this disease.
It's strange that this has finally happened but I know many more people have waited decades longer. I remember reading about the clinical trials for sof/vel last spring or summer and was excited to see that it treats all genotypes. I found out about the trials a few weeks too late but I'm glad that I got my chance.
We'll see how this goes and hopefully it will stay gone.
Just lovely ninja,
Done, und, cured! Big congrats! Keep building that weight, and your health back up. I am so pleased you are free of this virus now. Hope you get to feeling 110% quick. How are you feeling? Aside from proud of all you have accomplished. You mentioned before you look better and your wgt is better, any other things you have noted? Do keep us posted please. I thank Gilead everyday for bringing epclusa into being, and for days just like these.
C.
Congrats, Mike! Undetected and end of treatment, that's two things that are music to our ears. Thanks for telling us about the first test results that were so confusing. It's not uncommon to have a detected result that's too low to quantify. That means the viral load is below the LLOQ or Lowest Level of Quantification but still picked up a viral straggler. As we discussed, by the time you found that out, your continued treatment had successfully destroyed those viral remnants and you were likely undetected. It's a mute point now however! Well done...
12 weeks after your end of treatment you should be scheduled for one last set of tests to confirm you remain undetected, at which time you are considered cured. We call it SVR12 or a sustained viral response, week 12 after end of treatment. I would start planning an even bigger celebration now!
WOOT!!
I ended up getting the results of that blood test sent to my house and it was much more thoroughly explained. They said it was still detected but below the level they can get an accurate count.
The good news is that I finished treatment and got one of the last blood test results and I am currently undetected! It's almost unreal that this finally happened. Especially considering that I am about to be off of my current insurance in a few months. Maybe they thought it would have been immoral to let someone go uninsured when the success rates are so high or maybe they just didn't know (even though they should have known)?
Either way, I learned a lot from this and feel like Andy Dufresne, crawled through 500 yards of **** and came out clean on the other side. Haha
Agree - I don't like the way they provide this lab info either (not how it is laid out nor the lack of clarity).
Just have to take it at "face" value.
Under heading of "RANGE" - (column 5) everything listed vertically under this, is what you should be, to be within "normal" limits
Under the heading of "VALUE" (column 3) - everything listed vertically under that, IS what YOUR results are.
So, on this page just ignore completely the words "not detected", that is just what "normal" is.
All I can glean from this, is that YOUR result IS - 1.08 IU/mL, and 1.08 IU/mL converts to 0.1 log as I figure it. (If your result had been expressed as 1.08 log then that would convert to about 10 copies/ml.)
Phone the lab and/or the doc to get them to elaborate (clearly) with better words than what this report provides you.
But we all agree, you have crashed your load to smitherines, you should party NOW! Your LFT's and bloods are wonderful, you are doing stupendously!
C.
BTW- I also agree with Tig, it is always a surprize to still see differing labs using differing normal references ranges (especially for ALT's), you'd think we would have got it together by now, globally, with the "units" of measure and the "ranges"!
Thanks for clearing that up. That makes more sense now. I'm glad it means I am more than likely undetected as well! I will still ask for clarification with my doctor but it is still great news!
I sure don't like the way they list the results of the viral load. First of all, the Undetected reference they have on both your test reports isn't your result. It's the normal reference for someone without the virus. Your results back in February with the Log of 6.45 IU/ml, puts you in a range of 2.75 to 3.0 Million viral copies. That's considered a medium level viral load, as compared to low or high. Doesn't matter what the viral load is these days, except some protocols will allow you a shorter duration (ie 8 weeks vs 12). Harvoni is one such protocol. But that is decided by your doctor and various other tests prior to starting Tx.
With that said, and without the inclusion of UNDETECTED adjacent to the Log number leaves much to be desired with your report. But I will tell you that from years of experience, the most recent result of <1.08 IU/ml log, does indicate you are below the level of quantification and most likely are indeed undetected. It's pretty rare these days to have that significant of a viral drop (below the LLOQ) and not be undetected. I would ask for better clarification from the lab and doctor on future tests and tell them why. See if you can get a paper copy of the actual test result from the lab for your records. I don't understand why they place that kind of information on a portal without it being completely clear. In a perfect world you know....
One other thing I noticed was the reference range of the ALT. Holy smokes, their normal says it can be anything <79! That should be something far less, but again, different labs have different reference ranges. They have been revising those reference ranges lately to bring them together around the globe, but there's still no set in stone standard. Look at this graphic and you'll get a better idea of what I mean. Doesn't matter in your case, because both your AST and ALT are stellar and quite good. I personally believe the lower the better and we see levels far below the lowest level indicated on these new revisions. JMHO
Reference Range(s) New and Revised: (19-25 IU/L [for women], 29-33 IU/L [for men]) New Guidelines
Don't be concerned with any of it, you're doing great and by now you're clear of the virus and now you're in the mop up stage. Now the important part of the process is length of treatment. You want to continue as prescribed so all tissues in your body are exposed to the drugs. They work their way into all the hidey holes in your system and root out the stragglers. It's how these treatments work. Some people get that first undetected result and think they can quit, WRONG! It's the overall exposure time that assures your success.
I cannot see any indication of where the tests came from but I have a screenshot of the test.
It doesn't specifically say that the "ZZ-GE-unk" column is the viral load count anywhere but it does make the most sense when considering the other lab results on the site have the correct log numbers for my viral load at that time.
Edit:
I also included the reason why this confused me. The other picture shows my log number from February and it also says "Not Detected". I'm pretty sure this is because I just signed up to their online portal and they just used my current status but it is kind of odd.
-- Edited by CodeNinja on Wednesday 26th of July 2017 07:58:59 PM
Hi ninja,
When in doubt, there is no substitute for all eyes reading the same page to glean the nuances, key words, clues - is there any way you can post the report(s) in question (with personal identifying data removed)?
Aside from any additional words/numbers on your report ... does your report have any indication of what "machine/process" they used, words like: "Abbott ...", or it may show something like ..."COBAS AmpliPrep TaqMan"... Do your reports have any other words on them like these - indicating the test method they are using? Aside from showing the actual report as written, knowing the test process they used might reveal things more clearly. Just thinking. Regardless of how hard it is to interpret lab test results sometimes - just know YOU ARE doing super! - just as is destined and inevitable on the likes of epclusa - you have CRASHED your VL, your ALT/AST and bili look good (although we don't know for sure how "much" they crashed yet, only because those old ALT results are just not available to you yet) - I bet your ALT crashed too, right along with your VL - and all this at just 4 weeks!!!!!!!! You got it made. Don't fret. I must be like you, I like to get all the details figured out. C.
Here's an excerpted Q and A, written by Lucinda Porter in 2015 (talking about load tests).
Q: "What does this test mean?" This question is accompanied with test results such as:
HCV Viral Load (Log IU/mL) <1.18 not="" detected="" o:p="">
A: Undetectable means that hepatitis C is gone, and presumably all gone. The confusion over this test is because viral load tests don't measure down to zero. Further, viral load tests vary. For instance, the Abbott RealTime HCV assay (assay is a fancy word for a test that determines and measure the ingredients of something) measures down to 12 IU/mL in a 0.5 mL sample of blood. This means that if you have 12 IU/ml of hepatitis C (HCV RNA) in your blood, the test will detect it and count it. If you have less than 12, the test might not see it, and if it does, it won't be able to count it.
Each test has its own detection range, some lower than others. The main thing is this:
"Not detected" = negative for hepatitis C
"Detected" or an actual number of how much HCV RNA you have = positive for hepatitis C
There are no reference numbers, just the log but it does say "Not Detected" next to the log number. So I guess I am undetected then!
I just signed up for their online portal and requested my labs and it showed all of my previous labs. It was confusing me since every other lab had "Not Detected" next to ALL of the viral load log numbers (even when the log was around up around 6ish from a few months ago) but that could just be from them uploading the results and using the most recent detected status.
Is there another reference number adjacent to the <1.08? That's the log number, which is another way they refer to the viral load. If you had a detectable viral load, it would say DETECTED. Some labs will simply list the undetected viral load with a < (less than) figure. Some labs list their results differently and without seeing the actual form, I can't tell you how yours documented it. If you are below the LLOQ or lowest level of quantification and it doesn't say DETECTED, you are indeed undetected, congratulations. Your AST/ALT/Bili numbers are fantastic!
Oh, I am starting this week, I hope, and was hoping to Lose Some Weight...hehe. Congrats on your cure!
Only 9 days left before I'm finished!
I do have a question though. My last blood test from the beginning of July came in and my viral load said <1.08 IUnits/ml. I know that means it is less than 12 but is that just a fancy way of saying, "we're not exactly sure what your viral load is" or is that as low as they can accurately detect it?
I was also able to find my ALT/AST/Bili this time was 23/16/0.4
Hey Ninja,
That is just great! Love to hear that, that you've gained weight, look better! VERY welcome improvements! What a relief to feel better and to be able to eat better eh? Very good, as was your good news 4 week viral load crash. We are very lucky indeed to have drugs like epclusa nowadays.
Yes, appetite, and feeling unwell, with wgt. loss could all have been associated with your untreated HCV. Could very well have been directly in response to having an infection such a HCV, and/or indirectly associated with the degress of stress we go through before treatment. Either way, weight loss and those symptoms are very "not good" and not wanted, only makes all healing mattters harder. So - very excellent that you are eating well now and feeling improved!.
Stirve for the healthiest foods you can get/make, drink LOTS of water, and DO get your rest.
Yes, you could phone your doc's office and ask if they could fax or email you a copy of your "pre-treatment" assessment tests. Aside from viral load (VL) the HCV RNA test, other assesment tests would have included basic blood chemistry tests, "liver function tests" (LFT's) that include things like ALT/AST/ bilirubin, and other tests might likely have been AFP, fibro-test, things like CBC and renal function tests.
As well as asking for all copies of your pre-treatment tests, you can also ask for them to provide you with copies of the same tests they will repeat all through your treatment and after your cure.
Good to have your own copies at home, so you can see for yourself how high/or abnormal they were (before) , to see them normalize, and then to know what your "new normals" are, for future reference.
They may tell you how to get them "on-line", or, may tell you can only pick them up "in-person" at the docs office.
Glad you are looking better and feeling better!
C.
Still don't know ALT/ASTs. Do they get that from a blood test? If they do then I'm sure that'son the papers somewhere.
Im starting to feel a lot better and look a lot better as well. I gained a healthy amount of weight. I was around 135 lbs. When I started treatment which was the lowest I have been since high school. Now I'm at 160 which is good since I started to lose weight fast right before I started Epclusa. No more bags under my eyes. I can eat a lot more. I'm not sure if that was all from Hep C but it seems like it was at this point.
Great news! Please keep us posted.
SF
Hey ninja,
What great news! Been wondering how you were making out on that wonder-drug called epclusa! Very, very well indeed we see. Only a couple of headaches, well, you must have been keeping well hydrated then. I am so glad you are feeling OK and responding so well. That seems to be the powerful nature of epclusa and these marvelous new DAA's - they are working so well to cure us nowadays - it is a whole new world for those of us lucky enough to get these new drugs, it was such a struggle before, with the old drugs (and that was not so very long ago!)
I count my lucky stars, every day, for my treatment with these new DAA's.
I am so pleased for you.
Did you happen to find out what some of your pre-treatment ALT/AST's were, and what your current ALT/AST is now? Just curious, they usually drop (crash) too, just like your VL has done, so well!
C.
Hey Mike,
That's outstanding! These are fast acting and most people respond quick to them. By now you are undetected and you should stay that way.
We're all surprised by the ease of treatment. Proper hydration and administration is the key to success. Get your dancing shoes polished!
Welcome to the Forum Mike.
JimmyK
Hi Patricia,
Welcome to the forum! I see you just started Harvoni this week. Can you do me a favor and start your own thread? This section was started by CodeNinja and his journey on Epclusa. We don't want to hijack his thread. You can start a new one in this section or use the Harvoni Train, (below) it's more of a community thread. You can also introduce yourself and tell us some history by starting a new post in the New Members section. There are colored links in my signature to help you set up your signature line. It helps us when replying.
Use our Home page and the search function. We have a lot of good information here. When you can, list your Genotype (1b) and any lab tests you have. Your signature line is a good place to put them. The most important part of this journey is to stay compliant, don't miss a dose and drink at least a gallon of water EVERY day! Stay rested, eat right and you'll be celebrating in no time!
Harvoni Train
Today is my 4th day.
Yay ninja,
Im so glad you're starting treatment! Water consumption will really help and you will feel so much better soon.
Let us know your before numbers so we can share the excitement when they drop
A
Hi ninja
on Wednesday I will be half way through my Epclusa treatment of 12 weeks. I felt the same, normally gagwith big tablets but so relieved when I got to take first one...and since they go down easily....my first one was quite an emotional moment and setting my alarm ringtone to remind me its 'Epclusa time'.....I still jump with excitement when it's that time....knowing I'm another day done. This treatment worked so quickly in terms of making me feel better...we are lucky...life is good ...and the lovely Canuck has been an inspiration to me ...well wishes xxx
Jaggles
Hey Ninja,
Good for you! On your way - day one! - first pill down the hatch! And, you started up your own "On Treatment" thread here too. That's great (all round).
Yes, they ARE big pills, have to be, to contain that much magic! hee hee Good you were prepared and are dousing yourself with lots of water.
So you are familiar with the sof/vel trials (me too), I scoured them quite a bit as that is how i got my treatment, via a sof/vel/vox trial. We are lucky indeed to have received epclusa.
In your spare time you should click on the red link (in Tig's signature line) and explore "how to" do up your own signature line - it is real helpful when we start a thread, it makes it easy for info at a glance and helps conversations.
Your sig. line, perhaps, might go something like ....
... Male, 25 yrs old, GT 2b, HCV at least 4 years?, Dx 2013?, 3 "normal"? U/S's since then, Biopsy 2016?/no fibroscan - so pre-treatment Fscore not known yet at this point. Pre-treatment LFT's (ALT/AST/Bili) not known yet at this point. Pre-treatment VL (aprox.) 5 or 6 million range. SOT - May 12, 2017: Epclusa 12 weeks ....
Do you know how many blood draws (for VL's and LFT's) you will be having through treatment, and when they will be? Probably, you will get a 4 week one, an "end of treatment" one (EOT) at twelve weeks, and then at 12 and 24 weeks post-treatment. Find out what what dates and how many VL's and blood draws you will be having done. Try to get your own copies of all the old and new blood tests results, even the biopsy and U/S results, so you have them for before and after comparisons, good info to have at your fingertips, through treatment and beyond.
Fscores (your approx. levels of fibrosis/or cirrhosis) can be derived from various blood tests (some of which you likely had, perhaps a "Fibrosure/Fibro-Test, Acti-Test, Apri, or one of the many that are similar), or via a fibroscan, or, perhaps your biopsy gave you an Fscore - that is why your old records/results are good to know, (baseline info - where you started from) so you can track where your Fscores were and their improvements over time/post-cure.
Same can be said of the value of knowing your prior (baseline) LFT's (ALT/AST/bili's, and more) - these too allow you to gauge your levels of liver function/dysfunctions, pre-treatment and compare to your body's response to treatment (during treatment) and then post.
Be brave, you'll soon see, you will breeze through this!
C.