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Author Topic: Question about VL and what to do if doc suggests I switch  (Read 2651 times)

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Offline meherenow

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  • Posts: 9
Question about VL and what to do if doc suggests I switch
« on: September 24, 2010, 03:58:29 PM »
Hello all,

first of all I have to say what a fantastic forum this is for the wealth of information and support that it provides. It has been invaluable to me since diagnosis.

i will keep this as short as I can.

I was diagnosed in April and started taking Atripla on 10th May.

My results so far are as follows:


CD4

9/4/10  (23%)  95
26/4/10  (9%) 165
* Started Atripla 10/05/10
8/6/10   (28%) 293
12/7/10 ((28%) 311
6/9/10  (29%) 378

v/l
9.4.10      104.660 (log 5.02)
12.4.10    682380 
26.4.10    503211 (log 5.7)
* Started Atripla 10/05/2010
8.6.10      288  (log 3.52 )
12.7.10  900 log 2.95)
6.9.10  258  (log 2.41)
17.9.10  105 ( log 2.02)

I had a resistance test before treatment started and the results showed that Atripla should be fine.

Question 1. The initial drop of VL from 503211 to 288 was followed by a rise to 900 early on. Is this normal? I didn't notice it until I got all of my results layed out together.

Question 2. I saw doctor on 06/09/2010 and he said that I was to have a test that day and that if I was not UD then I should go back so we can discuss options. When I got the result of 258 I called and persuaded them to do another test two weeks later and then it came down to 105. That is a reduction from 503211 to 105 in 4 months and 1 week. Now the doc has said that I should go and see him as soon as possible to discuss options. I have an appointment next week. In the meantime they are trying to get another resistance test done on my sample of 06.09.2010.
I have never missed a dose and I look after my self in all other respects, diet, exercise, rest etc.
My question is, if my doc suggests I change regime am I being unreasonable to ask for a little more time to go UD or am I putting myself at risk of developing resistance? Atripla suits me very well and I am now in a very god routine with it (eating and timing etc).

Any pointers would be gratefully received, particularly if anyone else had a similar experience about taking longer than 4 months to go UD on Atripla.

Two other things which may be worth mentioning. I went on holiday to the US at the end of July and I still took my tablet at the same time but in a different time zone (5 hours ahead of UK) and then switched back again when I got home. I do not know if this may have slowed down progress. Other than that I take within an hour of the same time every day. The other thing is that when I attended clinic on 06.09.2010 they also gave me a hep B vaccination and I am concerned that may upset any VL tests for a few weeks.

Thanks in advance.

Chris

Offline aztecan

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  • Posts: 5,388
  • 29 years positive, 57 years a pain in the butt
Re: Question about VL and what to do if doc suggests I switch
« Reply #1 on: September 24, 2010, 04:07:37 PM »
Hey Chris,

Since your doctor said he wanted to discuss options, I believe that woudl include staying the course for a few more months.

I don't think that is unreasonable. Also, the improvment you have had in just four months is quite respectable.

I would definitely have a heart-to-heart with your doctor before deciding to switch.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline mecch

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  • red pill? or blue pill?
Re: Question about VL and what to do if doc suggests I switch
« Reply #2 on: September 24, 2010, 05:53:03 PM »
Yeah just hear out your doctor.  Took me a while to kick out the last viral load. I think thats common.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline eric48

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Re: Question about VL and what to do if doc suggests I switch
« Reply #3 on: September 25, 2010, 08:59:01 PM »
hi,

I am in similar pattern with viramune and kivexa (see my long thread for details)

while a bit slow, you are still within current guidelines targets.

One thing of interest I read somewhere that cohort analysis concluded that slow virologic response does not predict a lower immunologic (CD4) response. They seem to be quite independant issues. (as shown by your good CD4)

Hang on

Eric

Offline debsd222

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  • Posts: 69
Re: Question about VL and what to do if doc suggests I switch
« Reply #4 on: September 26, 2010, 09:41:27 PM »
Im on different meds (truvada, reyataz and norvir) but it took me about 5 1/2 months go UD. I thought it was slow but as long as we were seeing improvement the docs said I could stay on the same meds.
April 08 3 month bout w/ shingles, ongoing nerve pain
Dec 08 pos  cd4 200 %8  VL 18,000
Feb 09 started sustiva, truvada -allergic to sustiva, hospital 4 days.
March 09 started truvada, reyataz and norvir
March 09  cd4 279  % 12 VL 10,000
April 09 cd4 327  %12  VL 300
Aug 09 cd4 392  %16  Vl undetectable
Dec 09 hospital pneumonia 6 days
Dec 09 cd4 462  %20  VL undetectable
Mar 10 cd4 629 27% VL undetectable
July 9, 2010 cd4 505  21% VL undetectable
Oct 2010 cd4 689  22%  VL 64
Nov 2010  cd4689  22%  VL  UD
May 2013 cd4 759. 29%. VL. UD

Offline northernguy

  • Member
  • Posts: 1,347
Re: Question about VL and what to do if doc suggests I switch
« Reply #5 on: September 26, 2010, 09:53:29 PM »
I haven't reached undetectable after 6 months on Atripla, down to around 200. Doc said not to panic and wait a bit.  Genotype showed no resistance.  I believe member David_NC took a year to reach undetectable (?) on Atripla  (David how did you persuade your doc to stay the course?)
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Hellraiser

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  • Posts: 4,136
  • Semi-misanthropic
Re: Question about VL and what to do if doc suggests I switch
« Reply #6 on: September 26, 2010, 10:32:59 PM »
I haven't reached undetectable after 6 months on Atripla, down to around 200. Doc said not to panic and wait a bit.  Genotype showed no resistance.  I believe member David_NC took a year to reach undetectable (?) on Atripla  (David how did you persuade your doc to stay the course?)

First Bloods: 700k

Second Bloods(2 weeks on Atripla): 5k

Third Bloods(3 months in): 80

Fourth Bloods(6 months in): UD

For me this was good my doctor felt it was slow but as long as you're moving in the right direction they're happy

Offline meherenow

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  • Posts: 9
Re: Question about VL and what to do if doc suggests I switch
« Reply #7 on: September 27, 2010, 02:33:11 PM »
Hello everyone,

thanks for taking the time to reply. This is all very re-assuring and I feel more confident to be able to negotiate should my doc suggest a switch at this stage.

Chris

Offline eric48

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Re: Question about VL and what to do if doc suggests I switch
« Reply #8 on: September 27, 2010, 04:27:34 PM »
hi,

I did a quick review of the US guidelines. I could not find very precise treatments goals (it is such a long document, I may have missed it...)

I found this:

Viral load reduction to below limits of assay detection in a treatment-naïve patient usually occurs within the first 12–24 weeks of therapy. Predictors of virologic success include:
• high potency of antiretroviral regimen,
• excellent adherence to treatment regimen [12],
• low baseline viremia [13],
• higher baseline CD4 T-cell count (>200 cells/mm3), [14] and
• rapid reduction of viremia in response to treatment [13, 15].

Where I live the current guidelines are
 at one month a reduction of at least 1 LOG
 at month 3 a reduction of at least 2 LOGs (from baseline) AND/OR less than 400 copies
 at month 6 : less than 50 copies

Apparently you fall within this pattern (so do I ...); yet, with the newer meds, faster decline is usually observed, therefore, I suspect there is a tendency to consider these guidelines as a bit lax.

Some doctors had suggested to tighten them, but what to do if some one's response is naturally a bit slow ? Change combo whereas it is not a vital requirement ?

One of the causes for slower response is resistance (and be prepared, your doc is going to ask you that question : any missed dose ?); it is just one possible cause. Therefore, doc MUST look at this carefully.

Again , I am in the same slow response pattern as you are, but I do not worry (I have options left, anyway...)

Cheers Eric

Offline loop78

  • Member
  • Posts: 147
Re: Question about VL and what to do if doc suggests I switch
« Reply #9 on: September 28, 2010, 07:52:50 PM »
What others said: reaching undetectable sometimes takes time and as long as you haven't missed any dose, your numbers doesn't necessarily point to resistance.

There's one thing though that strikes as odd:

Quote
8.6.10      288  (log 3.52 )

Something's wrong there, either the log or the regular viral load. A viral load of 288 is a log 2.46, not 3.52. Conversely, log 3.52 viral load equals 3.311.

Maybe it's transcription error, but if it's not, and the correct number is the 3.52 log, it would mean you didn't have a rise.

By the way, I'm also on atripla and it took me some time to get to undetectable, check my signature.

Cheers.

Offline David_CA

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  • Posts: 3,246
  • Joined: March 2006
Re: Question about VL and what to do if doc suggests I switch
« Reply #10 on: September 30, 2010, 09:44:53 AM »
Hi Chris,

Take a look at my numbers below.  It took me almost 18 months to reach undetectable.  There was a large initial drop in VL, but then it took its time dropping much farther, and then there was that final gasp for life (from the virus) as I like to call it, before reaching undetectable.  From what I can tell, it was almost a treatment failure.  Genotype and phenotype tests showed Atripla should work fine for me, too.  The labs when I became undetectable were the cut-off for my Dr.  At that point, he was considering therapeutic drug monitoring.  His thinking was that for some reason, at least some portion of the Atripla wasn't being absorbed.  Fortunately for me, those labs were the ones where I finally reached undetectable, so none of that was necessary.  I have possibly missed one dose in over 3.5 years, so it wasn't a compliance issue, though I'm sure my Dr. had that at the back of his mind.  Like others have said, it does take time for some people to reach undetectable status, though I've got friends who were U/D in one set of labs.

Some other thoughts... is Atripa working for you in terms of not causing too many side effects?  For me, those are negligible, which is why I didn't want to switch.  It's convenient, has one copay (may or may not be an issue to you).  It's flexible - I take mine in the morning, with or without food (no difference), while hubby takes his at night.  It works.  Good luck with it all; maybe you have the same stubborn strain of HIV that I do!   ;)

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline meherenow

  • Member
  • Posts: 9
Re: Question about VL and what to do if doc suggests I switch
« Reply #11 on: September 30, 2010, 05:07:43 PM »
Hello all,

thanks again for the continued stream of replies.

I also thought that one result on 8/6 was an odd one. I meant to check that again today but forgot.

Update: I went to see doc today and he is very keen to change regime even though they managed to do a further resistance test on my early september bloods and that came back no resistance again so Atripla should be fine for me.

I has to push quite hard to give it another couple of weeks but he agreed. I have also had some other tests done to check what other drugs I may be suitable for if I have to switch. these will take about three weeks to come back so that has bought me some time to have another one or two VLs just in case the one they did today isn't quite UD.

I have not missed a single dose of Atripla since I started and the side effects were only minimal at the outset. I now take it every night at around the same time. I have a very busy life with a good career which is very important to me;. Atripla suits me and my life very well so I am reluctant to change unless I have to.

Fingers crossed for a UD on the bloods done today.....

Chris

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: Question about VL and what to do if doc suggests I switch
« Reply #12 on: September 30, 2010, 07:48:33 PM »
The bad thing is that I wouldn't expect a couple more weeks to make much of a difference.  Your numbers are trending downwards, just like mine were.  If your VL continues to drop, Atripla is working.  If so, I'd stay on it, personally (and did).  My Dr. never really mentioned changing meds before considering TDM, as mentioned above.  In fact, when I asked about switching, he was reluctant, as Atripla was working.  I often wonder if I would have had the same experience with other meds.  If, on the other hand, your VL starts to trend upwards, I'd certainly want to switch regimens. 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline eric48

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Re: Question about VL and what to do if doc suggests I switch
« Reply #13 on: October 01, 2010, 07:20:17 PM »
Following to this OT and my own concerns about this issue, I was reviewing a few threads and looking at signatures...

Docs and studies are usually interested in the long term out come and studies suggest that a slower VL decline does not
mean a lesser CD4 recovery.

Patients, on their end, are more anxious about their early results.

One thing that I see from signatures is that people with slow VL decline also have a very strong initial CD4 recovery
VL is normalized by mL, CD4, are also normalized by mL (because this is how it is measure -flowcytometry)

Nonetheless, I wonder if it would not make some more sense (in terms of the study of dynamics) to normalize the VL per CD4 amount

In other words, a strong and fast initial CD4 recovery could mechanically lead to a slower VL decline as it also offers the virus more hotel rooms (places to stay and hide)

As long as there is no resistance, a slow VL decline should therefore not be a matter of concern.

Cheers! Eric

Offline meherenow

  • Member
  • Posts: 9
Re: Question about VL and what to do if doc suggests I switch
« Reply #14 on: October 04, 2010, 01:19:51 PM »
Hello all,

just had latest test result back and the VL has gone up slightly to 129. This has confused me and I am really not sure what to do.

How accurate are these tests? is there a defined tolerance?
Is it cause for concern to see small rise like this sometimes? I can see the logic in eric48's post about a rise in CD4 giving more 'hotel rooms' for the virus so it almost seems like a rise could be expected?

I am dues back in two weeks on Thursday. I so don't want to change but also don't want to take doc out of his comfort zone and insist to stay on it a while longer. I do have the option of having a weekly VL next week and the week after and this could show another increase or an overall drop over time. I suppose I have nothing else to loose by taking that option. Finding this whole last bit frustrating......just want to get UD and start looking forward to Christmas! :-)

Thanks a lot to all who have offered words of wisdom so far,

Cris

Offline newt

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  • the one and original newt
Re: Question about VL and what to do if doc suggests I switch
« Reply #15 on: October 04, 2010, 04:09:39 PM »
Quote
How accurate are these tests? is there a defined tolerance?

Yes, about 1 log, which means in practice your viral load could from 1/3rd the result shown to 3 times the result, eg:

Result: 75 (log 1.87)
Range to consider: 25 (log 1.39) to 225 (log. 2.35)

To look at your results:

288 (log 2.45 )
900 (log 2.95)
258 (log 2.41)
105 (log 2.02)
129 (log 2.11)

All these are between log 2 and log 3, so could (prob do, to my mind) show that the drugs have got your virus down to around 300 copies or lower, but not yet to the magic "undetectable" 50 copies or below (log 1.7 or less).

They may in time. But they may not. They only way to find out is try and see. But you may prefer to just try sommat different.

This set of tests includes 3 results over 250. A viral load of 250+ is not good long term, because sooner or later the virus will most likely change to be become resistant to the drugs you are on.

It is worth bearing in mind for future test results that if your viral load shows up as 100 or less it's probably undetectable.

Six months is the guideline time to achieve undetectable viral load. But it can take longer.  Since you started treatment in mid-May, you are still a few weeks off the 6 month point.

I can't suggest one way or the other what you do at this point, change or wait, this has to be your choice.

But, in short, yes, viral load tests vary within a fairly wide range.

- matt


Edited for spelling
« Last Edit: October 04, 2010, 05:25:17 PM by newt »
"The object is to be a well patient, not a good patient"

Offline eric48

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Re: Question about VL and what to do if doc suggests I switch
« Reply #16 on: October 04, 2010, 07:17:41 PM »
This question and follow up discussion by newt on precision makes a lot of sense... I had read somewhere that precision is 0.5 logs. May depend on the lab equipment, I suppose.

Also the equipment that measures high VL (e.g. before treatment) and low VLs may very well not be the same ... depends on labs, I suppose. I would ask the biologist.

and speaking of stats, and numbers, I have made a quick evaluation of the number of HIV patient my HIV specialist has...Doctors experience also goes with that number. I consider myself privileged (so to speak) that I was referred to him...

To me sounds like you are on a downwards trend anyway

At first getting UD quickly seemed to me a 'personal' goal, I finally realized that what really matters is getting a strong, robust and efficient immune reconstitution. slow VL decrease (in the final stage, I am not referring to the early stage) also means you still have a lot of long living CD4 cells, read : memory cells, which is good news as they are of more 'values' than mere clones.

To me, and that is may be a fantasy of mine, as long as it is not plain outright resistance, slow decay is in fact a good sign. I may be wrong, but that is the way I look at things

I am sure you want to keep a close eye on it, but, if I had your numbers, I would not be worried (easy to say, i know...)

Cheers

Eric

 


Offline meherenow

  • Member
  • Posts: 9
Re: Question about VL and what to do if doc suggests I switch
« Reply #17 on: October 07, 2010, 06:05:12 PM »
Hello everyone,

a quick update because it's good to share  :)

I went back today for more blood to be taken, they want to do another VL this week and next just to be absolutely sure.

I also got results of a resistance test that they were able to call for on a blood sample from earlier in September and this showed that there should be no resistance to any of the drugs I am taking and in theory am an ideal candidate for Atripla. This is my second resistance test, I also had one before I started treatment and that showed the same.

I am also being tested for suitability for maraviroc, for sensitivity to another drug that I can't remember the name of and they have also done a drug monitoring test to try and get to the bottom of the reason why Atripla may not be working as efficiently as expected. I am told that in some people the sustiva component breaks down a bit quicker so this means that sufficient levels are not maintained between doses. I had to ask for this test because I feel it is important to try and find out why the Atripla may not be working properly for me before we explore other regimens.

I go back two weeks from today so will update again then. I really don't want to change because the Atripla suits me well but I have to trust what the doctor says and if he doesn't want me to give Atripla the full 6 months to do its work then I will at least be an informed position to discuss other options.

Many thanks again for all your input.

Chris

Offline meherenow

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Re: Question about VL and what to do if doc suggests I switch
« Reply #18 on: October 14, 2010, 03:31:47 PM »
* quick update

Hello all,

just a quick note that I found out today that my vl text of last week has come back undetectable.

If I hadn't have pushed a bit then I would have had my medication changed on my last visit even though I was very close to UD and not at the 6 month point.

Thanks to everyone who replied and armed me ith the info and confidence to wait it out a bit longer and get where I, and the doctor, wanted to be.

Cris

Offline eric48

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Re: Question about VL and what to do if doc suggests I switch
« Reply #19 on: October 14, 2010, 04:36:46 PM »
Good news ! (and I dare say good anticipated news)

let me cite this:

http://www.iasusa.org/pub/topics/2010/issue3/104.pdf

.......
the decay rate of plasma virus is determined by the lifespan of previously infected cells. The initial decay is very rapid [...]
with effective antiretroviral therapies the initial decay is followed after several days by a second decay phase characterized by a more gradual decline in plasma virus. [...] these cells have a half life of approximately 2 weeks.
........

Simply put your decay was not slower because the virus was harder to eradicate, nor because of a resistance (it would have shown on the intermediate genotype), nor underperforming meds (this is a problem of the past...).
Simply because your MEMORY (longer lasting) CD4 where either: (and/or)

- more many than average (1)
- have a longer life time than average (2)
- had more virus in them (3)

nothing of interest can be said about 3, on the other hand (1) and (2) imply that your immune system before infection was more ROBUST than average.
(genetics, previous exposure, etc.). Not only you should not worry about this slow decay any longer, but, be reasonably hopefull that when it recovers, you immune system will come back as a STRONG army (even if not numerous)

In other words, in my humble opinion, once this issue of possible resistance has been cleared, and under the strict condition of adherence to these modern , potent meds, you can rest assured that you immune system will be back, and you, as healthy as ever (before) !!!

I recommend this above article. It is crystal clear. Dr Siliciano should be commended for the clarity and robustness of his explanations!

Cheers

Eric

 


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