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Author Topic: Undetectable- different meanings?  (Read 620 times)

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Offline Loa111

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Undetectable- different meanings?
« on: February 06, 2019, 03:17:25 pm »
Undetectable must have different meanings?
I’m <40 which I thought was undetectable, though today I learned my hospital follows European guidelines where way below <20 is considered undetectable. The goal of my treatment being to get me to that totally undetectable level. Assuming I understand this correctly?
This is what the new hiv nurse told me today.

Also he said by European standards goal is to get CD4 above 500 and that when I get over 400 CD4 they can consider allowing me to stop the antibiotic. I’m 87 now so a journey to go.

Curious if I understand correctly ?

Offline JimDublin

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Re: Undetectable- different meanings?
« Reply #1 on: February 06, 2019, 03:27:08 pm »
40 is Undetectable, 20 is Undetectable and so is 200.

It depends the context and the labs used.

If its transmission than 200 is accepted as being UD and from a treatment guidelines clinically speaking its going to be anything sustained under 50. If its research they can go to 1-2 copies per ml.

Jim
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Offline JimDublin

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Re: Undetectable- different meanings?
« Reply #2 on: February 06, 2019, 03:28:50 pm »
Quote
Also he said by European standards goal is to get CD4 above 500 and that when I get over 400 CD4 they can consider allowing me to stop the antibiotic. I’m 87 now so a journey to go.

Must be brand new and unpublished because never in my life heard this one before and I watch developments and EU reporting closely. (Asides from statistical reporting on the health goals for nations that includes treatment outcomes like CD4 goals)

But try not to overthink it, stick with the program and there might be a reason why they want you to be over 500 or when you get closer to 200-300 for a few months more context given, or ask next time you see them.

P.S

As example on the UD definition.

The EU standard under the Dublin Declaration (Monitoring of HIV) for reporting is a viral load threshold for viral suppression of <200 copies/mL = UD

Firstly to allow for nations that don't have the labs going lower than that and also undetectable viral load (<200 copies/ml) are the levels that the virus becomes untransmittable

If you really want to dive into EU standards and recommendations this is the place to start BTW: https://ecdc.europa.eu
« Last Edit: February 06, 2019, 03:54:00 pm by JimDublin »
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Offline Loa111

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Re: Undetectable- different meanings?
« Reply #3 on: February 06, 2019, 04:10:03 pm »
Thanks for that info Jim. I’d an inkling he might have been a bit off on the info or perhaps a different interpretation.I was just in for 2nd follow up hep b shot today so was not an official ID doc visit, so info didn’t come directly from doc.

Nurse gave me impression given time by meds will get my VL well below <20?

Anyway all I can do is pop my pill every morning, and eat healthy n exercise, n get on with it. Seems their putting me on a 3 month appointment schedule which will be nice.

Offline JimDublin

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Re: Undetectable- different meanings?
« Reply #4 on: February 06, 2019, 04:13:42 pm »
Anyway all I can do is pop my pill every morning, and eat healthy n exercise, n get on with it. Seems their putting me on a 3 month appointment schedule which will be nice.

Indeed

Took me a long time to get to 3 months so you are doing far better and quicker than I was.

More importantly though, how are you feeling? I hope things are getting better, I know it was a rough start having to change antibiotics a few times due to allergies/reactions etc.

Jim
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Offline Loa111

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Re: Undetectable- different meanings?
« Reply #5 on: February 06, 2019, 04:21:55 pm »
My doing really good now Jim thank you. Energy is back. Atin’ well. Back at the gym n martial arts. Generally in good form. Still got a bit of dry skin n little redness on face which they tell me could be a combo of immune recovery and/or antibiotic side effect.
Really getting to the take the pill n forget about it a lot of the time.

Offline JimDublin

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Re: Undetectable- different meanings?
« Reply #6 on: February 06, 2019, 05:53:53 pm »
That's a great update, really sounds like you're doing well and getting back on track. Glad to hear it.

martial arts , don't hear that often, very cool 8),

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Online bocker3

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Re: Undetectable- different meanings?
« Reply #7 on: February 06, 2019, 10:28:28 pm »
The issue is really that "undetectable" is a laboratory term that has somehow become the vernacular for viral suppression. 
It actually, sort of, drives me crazy, as it leads to confusion.

Undetectable, actually means nothing more than the assay being used to quantify the virus is unable to accurately count below that level.  Whether it is <20, <40, or even, as it was back in the 90's, <10,000.  That number is assay dependent and has nothing to do with the person.

My lab now reports (has for a few years, I believe),
a value over 20, or
"<20 HIV-1 RNA Not Detected" or
"<20 HIV-1 RNA Detected" 
This last one means that there was virus, but less than 20, so it can't be accurately quantified.

I won't change the "new meaning" of undetectable, but at least people here can read this and, hopefully, not get confused when they get results from a different lab.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
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Offline MadDog125

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Re: Undetectable- different meanings?
« Reply #8 on: February 06, 2019, 11:04:51 pm »
As I was told under 50 is the US line clinically speaking.  Newer tests like the ones I've had can pick it up down to 20.  The theory with the U=U theory is if you stay under 50 your non infectious.  As for CD4 over 500? I havnt heard that one.  Once I was over 200 I could stop prophylactic antibiotics.   As I understand CD4 under 200 is considered the AIDS threshold.  I think there are several of us who are still well below 500 and will likely stay there.  I still struggle with the idea, but when referring to undetectable they mean in a clinical sense now not literal.  Eventually they will be able to detect total bodily viral count much less in an Ml sample.
DX 28DEC17, cd4 112, VC 63000
13FEB18, cd4 215, VC 156
14MAY18, cd4 260, VC 31
23AUG18, cd4 298, VC 61
03OCT18, cd4 300, VC 35
21NOV18, cd4 259, VC <20
18JAN19, cd4 284, VC 24

Offline JimDublin

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Re: Undetectable- different meanings?
« Reply #9 on: February 06, 2019, 11:57:53 pm »
Quote
U=U theory is if you stay under 50 your non infectious

U=U is less than 200 not 50.

https://www.preventionaccess.org/consensus

Generally I think "virally suppressed" suits better than UD, but that' just me.

« Last Edit: February 07, 2019, 12:01:00 am by JimDublin »
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Offline CaveyUK

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Re: Undetectable- different meanings?
« Reply #10 on: February 07, 2019, 05:20:08 pm »
U=U is less than 200 not 50.

https://www.preventionaccess.org/consensus

Generally I think "virally suppressed" suits better than UD, but that' just me.

I know it may be technically more descriptive but I don't think that helps sell the U=U concept as well as 'Undetectable' though, and also I think there is a bit of a 'woo-hoo' moment that comes with being UD that is worth it's weight, psychologically speaking - regardless of confusion over lab tolerances :)



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Online bocker3

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Re: Undetectable- different meanings?
« Reply #11 on: February 08, 2019, 06:43:15 am »
I know it may be technically more descriptive but I don't think that helps sell the U=U concept as well as 'Undetectable' though, and also I think there is a bit of a 'woo-hoo' moment that comes with being UD that is worth it's weight, psychologically speaking - regardless of confusion over lab tolerances :)

Except that when someone then becomes "detectable" -- i.e. a VL of, say, 23, it gives the appearance that they are no longer "U=U", when in fact, the virus is suppressed and they have virtually no chance of passing it on.


UD has become the "word" and there is no chance of going back, but it is problematic because UD is not a clinical term, it is a laboratory result.  When can be "detectable" at a very low level and still be untranmittable.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
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May2015 969/28% <20

Offline leatherman

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Re: Undetectable- different meanings?
« Reply #12 on: February 08, 2019, 07:41:01 am »
Quote
When can be "detectable" at a very low level and still be untransmittable.
unfortunately U=U not only creates stress and stigma for those who are unable to reach and consistently maintain "undetectable" but remain under 200 VL; but it also triggers a lot of unnecessary anxiety and stress over the misunderstanding that a low-level result implies treatment failure.
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Tivicay/Prezcobix

Offline JimDublin

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Re: Undetectable- different meanings?
« Reply #13 on: February 08, 2019, 11:55:39 am »
unfortunately U=U not only creates stress and stigma for those who are unable to reach and consistently maintain "undetectable" but remain under 200 VL; but it also triggers a lot of unnecessary anxiety and stress over the misunderstanding that a low-level result implies treatment failure.

Indeed, as example plenty of threads on the forum of people panicking & stressing over micro blips etc etc when simply no panic is required. Similar threads on fears about transmission parked in the prevention section.

U=U is a catchy phrase but I would agree there is some unintentionally pressure on people by using this  inaccurate terminology that has various definitions.

« Last Edit: February 08, 2019, 12:02:27 pm by JimDublin »
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Offline Loa111

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Re: Undetectable- different meanings?
« Reply #14 on: February 08, 2019, 02:42:50 pm »
On a real life level such confusion and perhaps a little bit of disappointment sparked me writing this post. When I found out there was an even lesser UD level <20 and I belong to the only <40 club I was like “damn this is crap”.  Felt like I got a grade B on a school test instead of an A+ grade.

Online bocker3

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Re: Undetectable- different meanings?
« Reply #15 on: February 08, 2019, 05:17:14 pm »
On a real life level such confusion and perhaps a little bit of disappointment sparked me writing this post. When I found out there was an even lesser UD level <20 and I belong to the only <40 club I was like “damn this is crap”.  Felt like I got a grade B on a school test instead of an A+ grade.

If you result says <40, that doesn't mean you aren't also <20.  It simply means that the lab doing your tests has a lower limit of 40.  In fact -- it's possible that you have no detectable virus -- no matter which assay used.
That is my point in my earlier posts -- UD is simply a laboratory result, based on assay sensitivity  It has no clinical meaning whatsoever.

There are assays that could accurately count down to 1, but they are costly.  There is no benefit behind all the extra cost to test everyone with that sensitive an assay, as the clinical implications of a VL of 1 vs. 37 are nil.

Mike

Modified to add:
ACTUALLY, I don't know of any lab that reports "undetectable" -- they simply report "less than the sensitivity" -- WE (doctors, nurses, patients) have created that term "undetectable" -- which may or may not be true.  Of course, again, the clinical ramifications of a VL of 37 is nothing!!

M
« Last Edit: February 08, 2019, 05:20:10 pm by bocker3 »
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2015 969/28% <20

Offline em

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Re: Undetectable- different meanings?
« Reply #16 on: February 08, 2019, 07:37:03 pm »
I do not know about the rest of you but when My ID doc told me I was undetectable. I did not feel any accomplishment  nor did I  jump up and down with excitement and simply said well that is great but I still have the virus and still as far as anyone knew at that time could still infect others. I thought great now I get to live a longer time with out sex and taking large numbers of medications that made me feel lousy and with the yoke of AIDS around my neck. Not knowing how long the medication might work it was just an extension of the hell I had already been living. At least that was my first thought I did not feel I had beat anything just got a wait till later extension on the terrible death I had been expecting.  O and this was in around  the mid nineties or so ? No one new if viral suppression could be maintained or how long it could stay undetectable . it was uncharted territory. Now around 25 years later still thinking how long can this last? apparently a long time . But everyone's lives are different you might have even better results than I have had .

remaining hopeful and thankful for how far we have come




Offline Expat1

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Re: Undetectable- different meanings?
« Reply #17 on: February 09, 2019, 05:59:12 pm »
When I found out there was an even lesser UD level <20 and I belong to the only <40 club I was like “damn this is crap”.  Felt like I got a grade B on a school test instead of an A+ grade.

My partner and I started treatment with CD4 counts over 1000.  Once his dropped to 695.  He was depressed.  He couldn't get his head around the fact that both counts were great and "normal" and one was not more normal that the other.  Subsequent test it was back around 1000. So still normal.

For 4.5 years my HIV VL was:      <20 undetectable,
3 months ago:                            <20 detectable

Same Same, but different.
 LOL


 


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