Aa
Viral Load test In
Just got the call from my nurse. She said my viral load which was 121 in the beginning is now 9.. Ill get a copy of the test on the 15th so I can share all the numbers with you all.
So not undectected and that was the day before my 6th shot. Could it be Im not going to clear? This is like a crushing blow to me. I thought I would reach UND by week 4.
So not undectected and that was the day before my 6th shot. Could it be Im not going to clear? This is like a crushing blow to me. I thought I would reach UND by week 4.
Rain: "So heres what I am wondering. Should I demand another test when I go on the 15th?"
Absolutely, Rain. And if you can arrange to have one earlier, let's say this Friday, that would be better.
It's important to know when you clear the virus because your 24 week tx as a G-3 may need some tweaking, depending on what your viral count turns out to be. My problem is I don't know the significance of e.g. a viral load of nine in a highly sensitive test. Since my tests were to 50, I could have had a count of nine yet was considered UND. So this is confusing.
Check out Sunqueen's thread. She was a G-3 who didn't clear at week four:
http://www.medhelp.org/posts/Hepatitis-C/Just-a-quickie-/show/934232
And Marcia was also a G-3 who didn't clear at week four.
At the beginning of tx, you were on 11.3 mg ribavirin per kilo and now you're on 11.9 mg per kilo.
Go for it, gal and get that viral load test.
And congrats on another shot done.
Absolutely, Rain. And if you can arrange to have one earlier, let's say this Friday, that would be better.
It's important to know when you clear the virus because your 24 week tx as a G-3 may need some tweaking, depending on what your viral count turns out to be. My problem is I don't know the significance of e.g. a viral load of nine in a highly sensitive test. Since my tests were to 50, I could have had a count of nine yet was considered UND. So this is confusing.
Check out Sunqueen's thread. She was a G-3 who didn't clear at week four:
http://www.medhelp.org/posts/Hepatitis-C/Just-a-quickie-/show/934232
And Marcia was also a G-3 who didn't clear at week four.
At the beginning of tx, you were on 11.3 mg ribavirin per kilo and now you're on 11.9 mg per kilo.
Go for it, gal and get that viral load test.
And congrats on another shot done.
Maybe she can scan and email . Then you won't have to worry about picking it up.
Sending thoughts and prayers your way. Good luck.
I only hope I can treat successful. Its so much on a person to do this TX. Life just stops all around you and no matter what you want to do something always messes it up. My kids and hubby have no lives either. School, work and home to take care of me and the household things I cant do anymore. If I have to do more time than the 24 weeks ( I know some of you do way much longer and my hats are off to you) I dont know how we will survive.
You can have the nurse fax your lab report to Kinko's, thats what I do. Works well.
You should have a test at WEEK TWELVE (technically that is the day before your 13th shot) that is the important test. I still think you need to find out what '9' means cause I can't figure out that part but if you are at "9" literally you should be clear by then...but if you are at 9000 you could still be there.
I went from 568,000 (low too like you) to 411 at week 4. But then at week 12 I was still stuck at 419. So, I had to extend treatment to 72 weeks because even though I was extremely low I was still detectible. Geno 3 especially can be tough with those final few stragglers.
That's why I'm so hung up on your "9" cause there is a HUGE difference between 9 and 900 you know? sometimes those of us who start very low have a harder time to clear the final ones. Don't ask me why but I've seen it time and time again to be true.
(PS NObody minds your questions that is why those of us who have treated successfully are still here!)
I went from 568,000 (low too like you) to 411 at week 4. But then at week 12 I was still stuck at 419. So, I had to extend treatment to 72 weeks because even though I was extremely low I was still detectible. Geno 3 especially can be tough with those final few stragglers.
That's why I'm so hung up on your "9" cause there is a HUGE difference between 9 and 900 you know? sometimes those of us who start very low have a harder time to clear the final ones. Don't ask me why but I've seen it time and time again to be true.
(PS NObody minds your questions that is why those of us who have treated successfully are still here!)
Ok lets see if I can straighten this all out some without forgetting to answer anyones questions (darn riba) lol
jmjm - I am on weight based riba. I take 1400 mg a day with my weight being NOW a proud 259. I was 272 beginning TX. Im proud because 2 years ago I weighed in at 312. Im 5'11 1/2. The weight loss mostly came from the past 2 weeks kidney infection I about died from lol. I somehow question my doc too. there is no local Hep here so I see a GI. he is the second one. The first one I refused to go back to when on my first appt he basically told me to shut up that he knew what he was talking about and I didnt.
NYgirl - Im very concerned about her use of loose words as well. I see on my other test that when I was diagnosed in march 2008 my viral load was 189,000 and at beginning of treatment March 10 2009 it was 121,000. she said just think about it being 121 and down to 9. So until Friday when I can pick up the test (they wont email it to me and my fax is out of black ink ughh) I will just be confused because she isnt going to be anymore help. I can tell that.
Port - Thank you for having faith in me. I know your having hard times right now and I wish there was something I could do to help you. If I win the lottery ill send you a housekeeper and a personal assistant. I feel like thats what I need lol..
So heres what I am wondering. Should I demand another test when I go on the 15th? Because that would be on my 10th week and if it takes 3 weeks to get it back too I will be in my 13th week?
Also on the 15th I am seeing a NP. they say she will have more time to spend with me. So I will have a huge list of questions for her. After that appt if Im still not satisfied with the quality of service Im going to visit another doctor. Funny how they seem to have all the time in the world for you until you start treatment and really need them.
thank you all - I hope I didnt miss any questions.
jmjm - I am on weight based riba. I take 1400 mg a day with my weight being NOW a proud 259. I was 272 beginning TX. Im proud because 2 years ago I weighed in at 312. Im 5'11 1/2. The weight loss mostly came from the past 2 weeks kidney infection I about died from lol. I somehow question my doc too. there is no local Hep here so I see a GI. he is the second one. The first one I refused to go back to when on my first appt he basically told me to shut up that he knew what he was talking about and I didnt.
NYgirl - Im very concerned about her use of loose words as well. I see on my other test that when I was diagnosed in march 2008 my viral load was 189,000 and at beginning of treatment March 10 2009 it was 121,000. she said just think about it being 121 and down to 9. So until Friday when I can pick up the test (they wont email it to me and my fax is out of black ink ughh) I will just be confused because she isnt going to be anymore help. I can tell that.
Port - Thank you for having faith in me. I know your having hard times right now and I wish there was something I could do to help you. If I win the lottery ill send you a housekeeper and a personal assistant. I feel like thats what I need lol..
So heres what I am wondering. Should I demand another test when I go on the 15th? Because that would be on my 10th week and if it takes 3 weeks to get it back too I will be in my 13th week?
Also on the 15th I am seeing a NP. they say she will have more time to spend with me. So I will have a huge list of questions for her. After that appt if Im still not satisfied with the quality of service Im going to visit another doctor. Funny how they seem to have all the time in the world for you until you start treatment and really need them.
thank you all - I hope I didnt miss any questions.
I suspect that you were given an extremely sensitive test because your initial viral load was only 121, 000. My gosh, gal, that's one heck of a wonderful starting number.
So maybe you do have a 9. That's what I'm hoping. Still, as a geno 3, I'd want to confirm soon since the benchmarks for geno 3 are different.
I hate to say it but you should bug the nurse again and say you can handle real numbers, for gosh sake. Really, she owes you more than 'just think of it as'.
Can your husband stop by for a hard copy?
You'll see it through. Like always.
Port
So maybe you do have a 9. That's what I'm hoping. Still, as a geno 3, I'd want to confirm soon since the benchmarks for geno 3 are different.
I hate to say it but you should bug the nurse again and say you can handle real numbers, for gosh sake. Really, she owes you more than 'just think of it as'.
Can your husband stop by for a hard copy?
You'll see it through. Like always.
Port
My initial bloodwork before switching to participation in a study read 49,800 with a log value of 4.7. My GI read it as 4.9 million so instead of thinking I would start in good shape, he made me extremely anxious, instead. He's a good doc and just made a mistake by reading too fast, but I did not need the added anxiety while waiting to start tx.
I'm for Hope. Would it be worse to be let down if your expectations aren't met or to remain in a state of long term anxiety from not having enough info to give you hope?
I'm for Hope. Would it be worse to be let down if your expectations aren't met or to remain in a state of long term anxiety from not having enough info to give you hope?
millions just think I was at 121 and now I am at 9.. "
"Not to worry about the millions"
Yeah now I'm concerned she said 121 to 9 - does that mean 90,000, 900 or 90 or 9? It sounds like she means 9 cause she said almost UND but 90 is almost UND and 900 is almost UND.............why can't she just say the actual numbers here? And what is the sensitivity of the test?
This lady isn't making any sense really....it's pretty darn straight forward stuff - and you need to know there are huge differences involved!
IF you are not down at "9" (literally) or at least "90" then yes you might want to consider upping the riba as your hemo is still pretty strong right now. But you can't know because right now you don't have a real, solid answer.
What a pain - I'd be a bit concerned but while a lot of nurses don't get this stuff most NPs do especially if this is a hep doc........but I'd think even a GI nurse could figure it out but how many doctors don't know what they are talking about when it comes to hep.
Is this a hepto or a GI?
"Not to worry about the millions"
Yeah now I'm concerned she said 121 to 9 - does that mean 90,000, 900 or 90 or 9? It sounds like she means 9 cause she said almost UND but 90 is almost UND and 900 is almost UND.............why can't she just say the actual numbers here? And what is the sensitivity of the test?
This lady isn't making any sense really....it's pretty darn straight forward stuff - and you need to know there are huge differences involved!
IF you are not down at "9" (literally) or at least "90" then yes you might want to consider upping the riba as your hemo is still pretty strong right now. But you can't know because right now you don't have a real, solid answer.
What a pain - I'd be a bit concerned but while a lot of nurses don't get this stuff most NPs do especially if this is a hep doc........but I'd think even a GI nurse could figure it out but how many doctors don't know what they are talking about when it comes to hep.
Is this a hepto or a GI?
Even in the studies, they wiggle the dates a bit because of scheduling problems for big groups of people. There's not much difference if they call it a 4 wk PCR or a 5. 4 is still the cutoff time for determining RVR.
Rain, see if you can get some more specific info on your starting VL. 121,000 would indicate a good predicter of success, because it's so low, 1.21 million would toss you back into the situation of having the outcome up for grabs. It does not actually matter as long as you clear by 12 weeks, but I, personnally, look for every hopeful scenario I can get.
Rain, see if you can get some more specific info on your starting VL. 121,000 would indicate a good predicter of success, because it's so low, 1.21 million would toss you back into the situation of having the outcome up for grabs. It does not actually matter as long as you clear by 12 weeks, but I, personnally, look for every hopeful scenario I can get.
Forgot to ask how much you weigh, how much ribavirin you are taking and what was your hemoglobin pre-treatment?
If you're not on weight based ribavirin, and/or your hemoglobin didn't decline very much from pre treatment -- then upping your riba dose would seem prudent assuming you can tolerate it. Recent studies seem to favor weight based riba in all genotypes and hemoglobin decline can be looked at as a positive in that it suggests better absorption of the ribavirin,.
-- Jim
If you're not on weight based ribavirin, and/or your hemoglobin didn't decline very much from pre treatment -- then upping your riba dose would seem prudent assuming you can tolerate it. Recent studies seem to favor weight based riba in all genotypes and hemoglobin decline can be looked at as a positive in that it suggests better absorption of the ribavirin,.
-- Jim
Yes port my 4 week was done the day before my 6th shot.
-------------
That's considered a week 5 test, not a week 4 test.
While not a big deal in your case since your still positive, it makes me wonder a little about the standard of care you're getting. Personally, unless you're already seeing a liver specialist (hepatologist) or have a lot of confidence in your medical team, I might want to get an outside consult with a liver specialist to go over all your numbers and to then best determine proper treatment length given that you're not RVR. Meanwhile, try and get tested weekly (day before the injection) until you are UND so you will have more information to base treatment length on. If this is not possible, push for as many tests as you can get and absolutely make sure you are tested the day before your 13th injection which would be your week 12 test.
-- Jim
-------------
That's considered a week 5 test, not a week 4 test.
While not a big deal in your case since your still positive, it makes me wonder a little about the standard of care you're getting. Personally, unless you're already seeing a liver specialist (hepatologist) or have a lot of confidence in your medical team, I might want to get an outside consult with a liver specialist to go over all your numbers and to then best determine proper treatment length given that you're not RVR. Meanwhile, try and get tested weekly (day before the injection) until you are UND so you will have more information to base treatment length on. If this is not possible, push for as many tests as you can get and absolutely make sure you are tested the day before your 13th injection which would be your week 12 test.
-- Jim
I am a genotype 3.. a or b I have no clue. Stage 0. I am on 24 weeks of treatment with 9 shots down now.
Yes port my 4 week was done the day before my 6th shot. My daughter only has a permit. Which is even worse yet lol
I just got off the phone with the nurse again. She told me to think of it this way. Not to worry about the millions just think I was at 121 and now I am at 9.. Which again left me confused because I have copies of my before tx test and they do say 121,000. She said I am almost undectable and my hemoglobin is at 12.1 and 32.8. My white count is 4.5
She says Im doing really good and she is proud of me (rolls eyes) I figure she got her butt jumped for being so insensitive.
Ill pick up a copy soon as I can drive again.
Yes port my 4 week was done the day before my 6th shot. My daughter only has a permit. Which is even worse yet lol
I just got off the phone with the nurse again. She told me to think of it this way. Not to worry about the millions just think I was at 121 and now I am at 9.. Which again left me confused because I have copies of my before tx test and they do say 121,000. She said I am almost undectable and my hemoglobin is at 12.1 and 32.8. My white count is 4.5
She says Im doing really good and she is proud of me (rolls eyes) I figure she got her butt jumped for being so insensitive.
Ill pick up a copy soon as I can drive again.
it was 121,000 and now she said it was just 9
--------
What is your genotype? Assuming it's geno 1, then that's still pretty good for a week 5 test and in most probability you will be UND at week 6. To better pinpoint when you will be UND, I would test weekly from now on the day before your injection until UND.
Also, as others have said, do get hold of that test print out ASAP to confirm. I understand your nurse is busy but the squeaky wheel is the one that gets greased in busy doctor's offices.
--------
What is your genotype? Assuming it's geno 1, then that's still pretty good for a week 5 test and in most probability you will be UND at week 6. To better pinpoint when you will be UND, I would test weekly from now on the day before your injection until UND.
Also, as others have said, do get hold of that test print out ASAP to confirm. I understand your nurse is busy but the squeaky wheel is the one that gets greased in busy doctor's offices.
Okay, just to check, you're a G-3 and your four week test was actually done at five weeks?
Do you know if you're a genotype 3a or 3b?
Can you send your daughter to pick up a copy?
Do you know if you're a genotype 3a or 3b?
Can you send your daughter to pick up a copy?
Can you have them faxed over? Just because it seems unlikely that they would give you that sensitive a test (<5) so that you could read that 9 (if it was <10 you'd appear UND). I'd at least call back and make sure that she is reading you this number correctly and it's actually 9. If it is you are in pretty good shape and have totally already gotten your two log drop. By most doctors standards you would appear UND at this point cause they mostly would only do a test down to <50 I'm thinking these days.
Back when I treated they were still using <615 which is useless!
Back when I treated they were still using <615 which is useless!
121,000 down to 9?? in my books you are a RVRer....no virus detected ...but i guess it depends too on the test system they used..some go down to 10 copies....
it was 121,000 and now she said it was just 9.. I dont know what she means by just 9 and she was in a hurry to get off the phone with me even telling patients that she would be right there where I could hear her. She also said she got the test results yesterday evening and didnt even call me. I had my shot last night so it will be a few days before I can pick them up.
Is there any way you can get the nurse to email you the results? Or have someone pick them up for you today?
See if you can.
See if you can.
I'm sorry I'm confused do you mean 121,000 to 90,000 or literally 121 to 9?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
