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Author Topic: Rollercoaster of Numbers  (Read 1663 times)

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Offline WildcatCC

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  • Posts: 91
Rollercoaster of Numbers
« on: October 20, 2009, 03:02:18 PM »
Greetings. First time posting a topic on my own. Please accept my advance apologies for sounding like an idiot.  ;)

First some background:
I found out I was positive in April of 08 when I collapsed at home and spent the following 2 weeks in the hospital with PCP. I had been in a relationship for 15 years we (BF and I) never saw the need to get tested despite having the occasional 3way (almost always safely - but it only takes that one time right?).

During my hospital stay, my ID doc told me my numbers were CD4 of 9 (not a typo) and a VL of 159,000. With aggressive and immediate HAART treatment, in 3 months time, my numbers changed to CD4 of 250 and VL of 1200. After a few more months of this same HAART regimen (Norvir, Presista and Sustiva), my CD 4 stabalized at 305 and VL hovered at 1000. Eager to raise my CD4 and, hopefully lower my VL, I asked my ID doc about Atripla. At the start of 2009, I decided to make the switch. 1 month later, my CD4 was 430 and my VL was 220. Yipee.

Present day:
Every 8 weeks or so I get my blood work done. In late August, my CD4 was 725 but my VL was 1200. My most recent bloodwork indicated a drop in CD4 to 525 and a VL of 1700. My %ages are decreasing as well (from 21% to 18%). I've not missed a single does of any HAART since my hospitalization. Not one dose. I don't have any side-effects of either regimen but prefer (obviously) the convenience of 1 pill a day - Atripla.

My ID doc just ordered a new genotype  - all previous genotypes showed no resistance to any drug regimen. So my question is this - should I just stop freaking out at the "trend" and see how my numbers fair over teh next few months or should I switch to yet another regimen start anew again? I know I need to do what's right for me - obviously - but sure could use some words of advice.

Apr  08 - Diagnosed
Apr  08  cd4 8, vl 150k
Meds: Prezista/Norvir/Truvada
June 08 cd4 250, vl 1600
Aug  08 cd4 275, vl 450
Meds: Atripla
Nov  08  cd4  386, vl 255
Jan   09  cd4  415, vl 2100 (spike?)
Feb   09  cd4 460, vl 212
May   09  cd4 515, vl 1200
Aug   09  cd4 717, vl 1535 % 23
Sept  09  cd4 535  vl 1710 % 18
Oct   09  genotype shows mutation. Discussing w/ ID Doc
Nov  09   cd4 480  vl 650   % 19
Dec  09 genotype slight mutation to Epivir and Retrovir
Jan 10   cd4 508 vl 250 (21%)  low vitamin d - on supplement 2000 iu/day
Mar 15 Change to Isentress and Truvada
May 5 cd4 498 vl 1485
June 16 cd4 550 vl undect!!!! (finally dammit)

Offline Assurbanipal

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Re: Rollercoaster of Numbers
« Reply #1 on: October 20, 2009, 04:25:44 PM »
The last couple of years there has been a lot of focus on the benefits of having an undetectable viral load.  It makes you less likely to develop resistance to drugs, less infectious, less inflammation eating away at your blood vessels, heart and organs ...

US treatment guidelines suggest most people get to undetectable by 6 months of treatment, although it can take longer if you start with a higher viral load.  But your viral load is going the wrong direction, and 18 months is too long  -- if I were you I would add another med (intensify) or switch to a new combo.

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline Miss Philicia

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Re: Rollercoaster of Numbers
« Reply #2 on: October 20, 2009, 04:33:59 PM »
Probably the first thing I would do is just toss out the 725 number, kind of like a blip but upwards not downwards.  If you do that then think of your cd4 hovering between the 430 and 525 areas, keeping in mind that even that is very, very lucky for someone who began with a miserable count of 9.  Seriously, most people that started with your numbers would have considered 200 a triumph a year on treatment.  But yeah, since your % went down too maybe yu had the sniffles and it's made your immune system fluctuate a bit.

However the important bit is that you've been on treatment now for a year and a half and your viral load isn't suppressed.  I've seen newbies on here not get it to that level in a year's time, but they eventually got it there.  Maybe you should discuss with your doctor what the magic cut off is in terms of elapsed months since the month/year that you began treatment where he would consider this to be treatment failure.  Also, perhaps he should consider a stronger HAART treatment than just Atripla by having you on a HAART+1 (not sure what the proper name is, but it's your basic three med HAART regimen plus one more HIV med on top).  This is often more used for long term survivor types that had years and years of treatment failure.  I'm on such a regimen, but it's odd for someone without resistance issues showing up on their genotype to have to resort to this, in fact I'm not even sure if I've ever heard of it).

edit: I see Assurbanipal said mostly the same as what I did.  I'll just add that maybe you should call your doctor and state you want this conversation with him before 2 more months.
« Last Edit: October 21, 2009, 10:18:40 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline rioz

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  • Posts: 54
Re: Rollercoaster of Numbers
« Reply #3 on: October 20, 2009, 05:27:33 PM »
Hi Wildcat,
I developed PCP with a CD4 of 54 in December 2007. I was put on Kaletra and  Epzicom and after about a year my CD4 was 200 and Undetectable. Switched to Epzicom, Lexiva and Norvir and now am at CD4 325 and Undetectable. Triumph indeed, Miss P!

I strongly agree with Assurbanipal and Miss Philicia. Some ID's are not aggressive enough, or worse.
I would speak to my doctor for some direct answers and explanations regarding his view of your labs etc.

Good luck to you.


Living with HIV since 1985
Living with AIDS since 2007

Truvada, Lexiva, Norvir, Levothyroxine, Testim, Sertraline, Crestor

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: Rollercoaster of Numbers
« Reply #4 on: October 21, 2009, 06:40:06 AM »
hello Wildcat,
The previous postings give good advice, I am just responding to the "rollercoaster' bit.I have had great results when feeling awful and visa-versa, I have had these tests since 91 and  its the viral load that I wait to hear about. I also try to hang on to how I am actually feeling.
Its seems you have had a good drug reaction and with some further tinkering you should get there.
take care
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn


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