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Author Topic: What might be the reason?  (Read 2165 times)

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Offline ZachR

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What might be the reason?
« on: October 28, 2019, 03:14:09 pm »
Just got my last check-up results, which were both frustratung and worrisome...to be honest, depressing.

My VL is 43, May, 2019 was 54 - practically undetectable, but not below 20, never was.
The new thing here, switched from Triumeq to Biktarvy in March 2019, my eGFR was 131... and now it is 92 with Urea, Creatinine and Phosphorus all on the upper limit.
According to all studies Biktarvy shouldn't cause that...
What do you think is going on?
Just wrote a sad e-mail to my doctor and will wait for a response.
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Online Jim Allen

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Re: What might be the reason?
« Reply #1 on: October 28, 2019, 04:08:32 pm »
Hiya,

So your VL is now undetectable and your eGFR is 92.  Happy days.

Creatinine upper limit? So within the normal range, I presume. Then I would not worry about it as it will fluctuate and experience is switching meds might through the odd result up slightly nest to normal variations, it's also only a single snapshot moment so not really interesting unless you have a trend going into a certain direction.

Don't overthink it and see what the next routine check-up brings you
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Offline ZachR

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Re: What might be the reason?
« Reply #2 on: October 28, 2019, 04:22:16 pm »
Thank you, Jim, you really help settle down my mind.. Just this dramatic drop of 33 points at 23yo scared the shit out of me, but it should normalise hopefully, additionally, I was taking metronidazole when did the test, it might somehow pushed this fluctuation too..
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline kentfrat1783

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Re: What might be the reason?
« Reply #3 on: October 28, 2019, 08:55:06 pm »
Hi,

Just make sure to work with your doctor and ask questions if needed (as you have done). 

I have learned from my results that some numbers will go up and down for no reason. Most are still within range or just out and my doctors aren't worried about it.  Even one was 1 point out of normal and I was freaking but he was like "it's good". 

But if OK to ask why did you move from Triumeq?  I just started Triuemq back in January as I was on Atripla.  It does the job but was nervous about changing as my insurance dicated it and not my doctors (but we had been talking about it for 6 months).

Keep up the great work and I'm jealous of your numbers. 

Kenneth

09/17/2019 - CD4 218 (16%) VL (?)
06/18/2019 - CD4 173 (16%) VL <20
03/13/2019 - CD4 170 (16%) VL <20
January 2019 - Started Triumeq
12/05/2108 - CD4 174 (18%) VL <20
08/28/2018 - CD4 166 (15%) VL <20
05/08/2018 - CD4 106 (11%) VL <20
03/05/2018 - CD4   90 (10%) VL <20
12/11/2017 - CD4   60 (  8%) VL ?
09/07/2017 - CD4   42 (  6%) VL  54        (1.70)
May 2017 - Started Atripla
05/11/2017 - CD4     2 (  1%) VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline ZachR

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Re: What might be the reason?
« Reply #4 on: October 29, 2019, 05:26:10 am »
Hey Kenneth,

Thank you for the support, as Jim said, it is obvious that I am that type of an overthinking guy, but can't help.. Probably this attitude is more damaging than helping me.
I just feel overwhelmingly responsible for my body and health after what I unintentionally did to it (contracted HIV), which is a psychological thing.

Regarding my switch, with Triumeq I had a severe reaction - sudden high blood pressure, cognitive changes, neurological changes, difficulty breathing for months and nothing helped, tho all my blood markers were more than perfect. After the switch, I realised that it might have actually been my rapidly recovering immune system, as my symptoms didn't quickly disappear after the switch as they should. To this day neither my doctor nor I know for sure if it was Triumeq itself or an immune recovery reaction, but he thought that safest was just to switch to an equally effective and safe regimen. Hope this helps.
I have noticed that some people just don't react well to Dolutegravir in Triumeq, but many have no issues.
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline ZachR

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Re: What might be the reason?
« Reply #5 on: October 29, 2019, 11:38:35 am »
An update here,

In order to help my concerns did a new eGFR test today and just got my results and my eGFR calculated via creatinine is back to 120 and my creatinine levels are back to the lower end of the range, couldn't be more relieved!
Additionally, checked my fasting blood sugar and crp out of curiosity to have a glimpse at my inflammatory and metabolic state.
Glucose: 4.4 (3.9 - 6.2) or 80 mg/dl
CRP <1  (recommended <5)
Which are fabulous, too.
« Last Edit: October 29, 2019, 11:46:33 am by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline harleymc

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Re: What might be the reason?
« Reply #6 on: October 29, 2019, 03:52:46 pm »
These test results are very easy to overthi K. Kidney results will fluctuate based on exercise food intake and amount of water you're dri king. You could get different results over a one hour period.

Cd4s are looking good, you started from a massive viral load.  Your body will still be producing bits of junk RNA that's non viable but which gets picked up in viral load testing.

Don't overthink these tests there's sweet f a we can do about them.

Offline venom_X

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Re: What might be the reason?
« Reply #7 on: October 30, 2019, 02:32:39 pm »
The eGFR is a calculated biomarker that is highly dependent on your plasma creatine levels which in turn can be impacted by many factors like water/protein intake.

If you are worried about the TAF's impact on the kidney, you can ask the doctor to check on a few other biomarkers that is more sensitive and specific to tenofovir's impact on kidney (tubular) such as beta-2 microglobulin.

That low of a residual VL is not ideal but not much that we can do about it. How do your CD4 and CD4/CD8 ratio do this time?
Infected Mid June, 2019
Acute syndrome late June, started Biktarvy
3 weeks post infection (1 week on ART): VL: 330k, CD4 400 (33%), CD8 460, CD4/CD8 ratio: 0.9
5 weeks pi: VL: 300, CD4: 500 (30%), CD8: 690, ratio: 0.7
8 weeks: VL: 30,  CD4: 590 (28%), CD8: 920, ratio: 0.6
12 weeks: VL <30, CD4: 750 (37%), CD8: 700, ratio 1.1
20 weeks: VL<30, CD4 550 (dropped from 750 from 2 months ago, 38%), CD8 450, Ratio 1.2, elevated liver enzymes

Offline ZachR

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Re: What might be the reason?
« Reply #8 on: October 30, 2019, 06:48:36 pm »
@venom_X
I started with an exceptionally high VL, yet got UD in 4 mo, January, 2019, then had my VL hoovering around UD (50+/-15) till now. This time my doctor said we didn't need to measure my CD4s anylonger, as I was stanle enough in his words. I didn't like that, but decided to stop being so demanding.
Speaking clinically, there's no difference between VL of 20 or 50, it's only the reservoir size that matters.
« Last Edit: October 30, 2019, 06:50:53 pm by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline leatherman

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Re: What might be the reason?
« Reply #9 on: October 31, 2019, 07:28:01 am »
yet got UD in 4 mo, January, 2019, then had my VL hoovering around UD (50+/-15) till now. This time my doctor said we didn't need to measure my CD4s any longer,

Speaking clinically, there's no difference between VL of 20 or 50, it's only the reservoir size that matters.
in America the recommendation is that if your VL is UD and your cd4 is >500 for 2 years then cd4 counts no longer need to be tested. Otherwises the guideline is for testing twice a year.

If you got UD in 4 months of meds and have spent the last year not UD (based on how many tests? Only 2?) you should still be having your cd4s tested.

while I agree that a vl of 20-50 is not a big issue, with only about a year of treatment, it might mean that your virus is still not completely suppressed. Reservoir size is rarely measured as the test requires more blood, time, and money. A consistent small VL could indicate that the reservoir size has not been depleted yet....but should with more time and treatment. CD4 testing should still be monitored to know if the current regimen is working or if a med change (a different regimen or an added medication) might be needed.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline ZachR

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Re: What might be the reason?
« Reply #10 on: October 31, 2019, 09:05:33 am »
Don't know...I live in France and it was my doctor deciding so, and as I noticed, I asked him why not measure CD4s.. he said not necessary. My VL has been:
14,000,000 pretreatment
1,100 - 2 months on Triumeq
54 - 4th mo Triumeq
78 - 5th mo Triumeq
24 - 1st mo Biktarvy
55 - 3rd mo Biktarvy
43 - 8th mo Biktarvy

Now 13mo on treatment. My CD4s have never been below 500 since on treatment. Still on Biktarvy. No idea if these results mean that the treatment is working on not, and having read your responses I start thinking that:
1. My virus isn't well-controlled.
2. My doctor doesn't care much.
Are my thought what you meant?
« Last Edit: October 31, 2019, 09:12:50 am by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Online Jim Allen

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Re: What might be the reason?
« Reply #11 on: October 31, 2019, 09:28:33 am »
Hiya,

End of the day if you are concerned, have a frank discussion with your doctor on your next visit, perhaps do a bit more probing for more details why they feel CD4 testing is not needed.  Anything mentioned here would be guessing and guidelines on frequency are very generic and in practice, things can differ, also things might vary by nation.

Overall to me seems your meds are working and you're doing well for the first year,  The VL is a downwards trend now below 50 copies despite the switch.  The medication is working in that regards as designed.

Best, Jim

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
http://i-base.info/cd4-count/

Low-level blips & treatment

https://www.poz.com/article/viral-blips-raise-risk-hiv-treatment-failure
http://www.aidsmap.com/Spanish-study-gives-reassurance-small-HIV-blips-do-not-predict-treatment-failure/page/3085173/

4289 individuals - very low level viraemia (20-49 copies/ml) was not associated with subsequent virological failure when compared to persistent suppression below 20 copies/ml

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3308904/

3550 participants blips of 500999 copies/mL were associated with virologic rebound, whereas blips of 50499 were not.

In addition, there is the theory that no resistance and good adherence micro blip are due to a release from the viral reservoir perhaps including defective copies being released.

Defective copies - 90℅ or more of HIV in reservoirs are rejects
https://www.sciencedaily.com/releases/2016/08/160808150523.htm

Viral blips (50 - 500 copies) during suppressive antiretroviral treatment are associated with high baseline HIV-1 RNA levels
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4915053/

https://www.healio.com/infectious-disease/hiv-aids/news/online/%7B8373ca63-674d-4015-ac35-f4da653c7415%7D/qa-understanding-persistent-low-level-viremia-in-people-with-hiv
 
« Last Edit: October 31, 2019, 09:51:13 am by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
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You can read about HIV prevention here:
HIV prevention
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PEP and PrEP

Online Jim Allen

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Re: What might be the reason?
« Reply #12 on: October 31, 2019, 10:02:48 am »
I'll add that it's easy to get overly focused on numbers/lab results & guidelines. I'm sure many of us have done it at some stage or another.

I find that reminding myself it's about the trend rather than single or a few results is more important and that things do vary from time to time.  ;)
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline leatherman

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Re: What might be the reason?
« Reply #13 on: October 31, 2019, 10:25:36 am »
having read your responses I start thinking that:
1. My virus isn't well-controlled.
2. My doctor doesn't care much.
Are my thought what you meant?
first, let me say I very much agree with Jim's comments


have a frank discussion with your doctor on your next visit, perhaps do a bit more probing for more details why they feel CD4 testing feel it's not needed.
secondly, I am surprised at how often you're being tested in general. so far cd4/VL tests have been done nearly every month. (I was only tested that frequently when my cd4 was much <200 and I was nearly dying of AIDS.) Perhaps your doctor is dropping the cd4 test because the results have remained so stable in the "normal range". But I would discuss the issue to find out just how often the cd4 will be checked. Perhaps this is not a permenant stoppage situation but just not testing as often.

Anything mentioned here would be guessing and guidelines on frequency are very generic and in practice, things can differ, also things might vary by nation.
nobody here's gives medical advice. We just make suggestions based on our own situations. And if there's one thing 40+ years of HIV has taught us is that HIV affects each of us somewhat differently than everyone else. That's why it's often referred to as "practicing medicine" - everyone is somewhat different internally and so there's never one 100% perfect solution for any problem. But luckily our bodies are enough alike that there's usually some solution that works for most people.

Overall to me seems your meds are working and you're doing well for the first year,  The VL is a downwards trend now below 50 copies despite the switch.  The medication is working in that regards as that's what it's designed to do.
if your cd4 is remaining stable and the VL trend is down, then you're meds are working and your virus is under control. As far as American guidelines, a VL that is less than 200 is considered well-controlled virus with successful treatment

one final note, to expand on something Jim said, "trend"
(that I see Jim mentioned again as I was writing this up LOL)

Graphing out your lab results can help understand the results. HARRT treatment has never assured a straight line to successful treatment. While we'd all like to see our VL drop from the 100,000s to 1000s to 10s to 0 until finally stabilizing at UD (or at least in the controlled range of <200); it doesn't always happen that nicely. Sometimes while the VL count is decreasing in general, it may not graph as a nice straight download line; but as a downward trending "jaggy" line. It may not be the prettiest graph but your VL has trended down during your HIV treatment - with a little "jiggle" at the end not quite stabilizing at UD yet.

CD4 results definitely should be viewed as a graph instead of a one-off test number. CD4a fluctuate by up to 100 points in a single day. A general rule is to view cd4s as the trend of at least 3 tests over at least 3 months or more.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline ZachR

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Re: What might be the reason?
« Reply #14 on: October 31, 2019, 12:42:40 pm »
Thank you guys for your time and experience you shared. The HIV world feels safer with experienced people around.
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline venom_X

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Re: What might be the reason?
« Reply #15 on: October 31, 2019, 03:27:43 pm »
Agreeing with the experts above on the VL. One recent study I read through is that the majority of the reservoir was established at the time ART was initiated. And thus by logical extension, the higher the RNA levels at the onset of ART, the larger the reservoir?  The study hypothesized that the ART somehow changes the dynamics and keep those CD4s already infected with the viral gnome integrated alive which in turn turns into long-lived reservoirs. Without ART, those cells are otherwise destined to go through apoptosis.

In your case when you start ART, the VL was very high, and what you see now with the residual VL is nothing but the delayed release of virons and death of those infected cells that would otherwise should have been dead in a short period of time without ART. Likely the ART is very effective in stopping new infections but for those cells already infected, the ART likely delayed the dynamics and dragged it out.

I'm hypothesizing this because I started ART during the acute phase right around the time when the peak virema is reached. I still haven't achieved TND yet while I saw lots of people who started ART later with a lower VL have achieved TND within the same time frame.

https://stm.sciencemag.org/content/11/513/eaaw5589
Infected Mid June, 2019
Acute syndrome late June, started Biktarvy
3 weeks post infection (1 week on ART): VL: 330k, CD4 400 (33%), CD8 460, CD4/CD8 ratio: 0.9
5 weeks pi: VL: 300, CD4: 500 (30%), CD8: 690, ratio: 0.7
8 weeks: VL: 30,  CD4: 590 (28%), CD8: 920, ratio: 0.6
12 weeks: VL <30, CD4: 750 (37%), CD8: 700, ratio 1.1
20 weeks: VL<30, CD4 550 (dropped from 750 from 2 months ago, 38%), CD8 450, Ratio 1.2, elevated liver enzymes

Offline ZachR

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Re: What might be the reason?
« Reply #16 on: November 01, 2019, 06:42:33 am »
Right, well, I started to investigate my symptoms 2 weeks post infection, yet, because of medical negligence. I remember going to my GP with my blood work and swolled lymph nodes, and telling him that my immune cells are imbalanced, there must be something, and him rudely sending me a few times home and telling me to stop worrying and live my life normally. Hence, I was diagnosed in the 11th week post-infection, which is the late phase of acute infection. In perfect sync with my high VL I had a very acute retroviral syndrome from the 10th day post-infection, when I went to the ER and they said it's the flu.. Luckily, as a child I had tons of flus and strep throats, so my gut told me it was different this time. Even before the retroviral syndrome, the same day I had a very bizare feeling that something was going to happen to me that day and later in the day, I fainted and everything started. Can't forget that feeling to this day and it always reminds me how intelligent our bodies are.

Btw, my subtype is F, for which there isn't a lot of information, all I know is that mine is a wild type and has no resistence.
And honestly, I probably should be most thankful among all of you, because the meds managed to cut down that 14 000 000 only in 4 months to undetectable levels, which is a clear demonstration of how effective they are today.
« Last Edit: November 01, 2019, 06:52:44 am by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

 


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