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Author Topic: WTF? six years on ARVs and CD4s still below 400...  (Read 2723 times)

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Offline SouthSam7

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WTF? six years on ARVs and CD4s still below 400...
« on: October 24, 2009, 12:42:19 PM »
I've been on the same regimen for almost 6 years.  I rarely miss a dose.  I work out 3 times a week and eat pretty well.  I was diagnosed at 180 CD4s and VL > 100k.  I take Truvada, Norvir and Invirase.  My CD4s have never gone above 400.  My friends' were all diagnosed after me and their CD4s are always between 700 and 1000 or even higher.  They are on different meds, though.

Does my regimen have something to do with my CD4s?  My VL immediately dropped to undetectable after I started meds, so I thought my CD4s would go way up eventually.

I'm discouraged because my blood lipids are through the roof (due to PI and Norvir I suspect).  Specifically total chol is 250, good chol < 40 and bad chol > 160. Trigs are > 250.  If another regimen would give me better CD4 response and less lipid problems I want to know about it.

I just got a new NP and I think she sucks.  She either has dyslexia or doesn't know anything about HIV.  If I mention a new drug I've heard about, she immediately thinks I'm talking about something completely different (even different type of drug for a different ailment altogether). 

For example, I mentioned Cymbalta for chronic body aches to her, and she thought it was a narcotic!  That doesn't make me very confident in her.  I just had "full labs" last month and she forgot to check blood lipids.

Thanks,

Sam

Truvada
Invirase
Norvir
Tricor
Crestor
Testosterone Cyp. 1.5 cc month inject
Lexapro 5 mg (I have no idea why she put me on this; I'm not depressed I don't think)

Offline leatherman

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #1 on: October 24, 2009, 01:07:29 PM »
hey! I don't have anything helpful to tell you; but I was just bemoaning the same thing. ;D

I was diagnosed with AIDS 17 years ago and have been off and on meds for 15 of those years. It took me 10 yrs to reach undetectable.  :o I've been on the same regimen for nearly 7 years  (norvir, reyataz, viread, videx ec) and was just finally coming and staying consistently close to undetectable and 275 cd4 for nearly 2 yrs. running. Now my latest tests just dropped back down to 209. ::)

But you know what? It's been nearly 12 yrs since I was last in the hospital, I've only had the flu twice, and a "mystery fever" twice in all those years, and I feel healthier than I have in the last decade. It's not about how many tcells you have, it's about how well they work  ;)

hope you get some better answers; but you're not the only one with low cd4 levels  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Inchlingblue

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #2 on: October 24, 2009, 01:25:32 PM »
There are studies ongoing that are looking at different agents that seem to increase CD4s, such as IL-7 as well as a vaccine currently in Phase II (Vacc-4x), check out the link below from someone on these forums who is in the study and talks about his Tcells shooting up 300 points! Even though these are still not approved therapies and may not offer you anything now, you never know what's around the corner.

It wouldn't hurt to check the website for the American Academy of HIV Medicine (www.aahivm.org) and see if there are other doctors specializing in HIV in your area, you can do a search by zip code.

LINK:

http://forums.poz.com/index.php?topic=27011.msg362658#msg362658

Also, you might want to consider Isentress, which has been shown to be very lipid-friendly and, even though ARV drugs don't seem to act directly on CD4s, many people experience nice gains with it.

LINK:

http://www.thebody.com/content/confs/icaac2009/art53695.html
« Last Edit: October 24, 2009, 01:41:58 PM by Inchlingblue »

Offline dingowarrior

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #3 on: October 24, 2009, 01:38:40 PM »
I have the same/similar issue..I was diagnose in "06" with CD4 OF 180..VL 56,0000..I 've only missed 1 dose in 4 years..and I cant seem to get past the 500 cd4 mark..My doc. says not to worry,I've never been sick even when I was at 180,but I cant understand why I cant get past 500??

Offline Ann

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #4 on: October 24, 2009, 01:55:34 PM »
When talking about CD4s, you always have to keep in mind that most of us don't know what our "normal" or "baseline" CD4 counts were like before we were hiv positive.

"Normal" CD4s are usually quoted at somewhere between 500 and 1200, so a person who appears to be struggling for years to get past 500 may have only had 500 on average before infection.

It's worth bearing in mind when fretting about your numbers.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Joe K

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #5 on: October 24, 2009, 02:05:04 PM »
Hey Sam,

I hate to tell you this, but I've been on ARV for 22 years and my CD4s have rarely gone above 400.  I think that some of us, simply have low counts and that is the way it is.  Over the past ten years, I have been relatively healthy, with counts in the 300s and I just accept that it is, what it is.  As to your NP however, you need a new doctor and might I suggest that you start asking more questions.  You say she put you on Lexapro and you don't know why?  I cannot conceive of my starting any drug, just because my doctor said so.  It's your health and you need to understand the pros/cons of any medications, especially depression meds, that are not prescribed by a psychiatrist.  I also find that her omission of testing your lipids, while you are taking Tricor and Crestor to be unacceptable care and you need a doctor experienced with HIV.

Offline veritas

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #6 on: October 24, 2009, 03:37:10 PM »

Guy,

This link from Johns Hopkins gives you an overview as to the mgt of cd4s. There could be many reasons for the slow increase of cd4s. Perhaps the link could prvide you with some questions to ask your Doctor.

http://www.hopkins-hivguide.org/management/laboratory_testing/cd4_cell_count.html


v

Offline SouthSam7

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  • Posts: 428
Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #7 on: October 24, 2009, 03:41:48 PM »
Thanks, everybody.

I will check out all the info you gave, and also I will relax about my CD4s.  I was unaware, even after all this time, that for some, "lower" CD4 numbers are the norm.

Thanks, again,

Sam

Offline leatherman

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #8 on: October 24, 2009, 07:53:09 PM »
thanks for that link, V ;)
Quote
CD4 response generally correlates with VL suppression, but discordant results can occur; 10% have VL suppression but no CD4 rise. Lack of CD4 response is not evidence of treatment failure if VL suppressed.
so perhaps we're not broken or sick, just part of the special 10%  ;D
(though I at least had some rise from the <10 tcells I had when I had PCP  :D )
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline HollyStar

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #9 on: October 25, 2009, 02:55:12 AM »
Hi Sam,

My bf was on the same combo for about six years and seemed to hit a barrier. He recently switched to Atripla and hopefully he will see an increase.

As to your doctor, run away, far away from her, lol. Joking aside, I would be concerned that if you ever needed to change your regimen that she may not have a clue as to what a proper regimen should include. Good luck on your numbers.
Diagnosed  July 28th 2003

'I don't want to get to the end of my life and find that I just lived the length of it. I want to have lived the width of it as well.' -Diande Ackerman

'Why not go out on a limb? Isn't that where the fruit is?' -Frank Scully

'If your ship doesn't come, swim out to it.' - Jonathan Winters

Offline madbrain

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Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #10 on: October 25, 2009, 05:49:51 AM »
My bf is not getting past 400 CD4 either, after 2.5 years on HAART, most of it on Atripla, though he had about 9 months on Reyataz / Norvir / Truvada too.

I think Ann is on the right track that some people naturally have lower CD4 counts. My bf's initial CD4 count was 300, less than 6 months after infection (last neg test). It's very possible that his normal count was 500 or so. We'll never know, since CD4 count tests only prescribed after one turns poz, never before.

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #11 on: October 25, 2009, 07:30:02 AM »
I've been on the same regimen for almost 6 years.  I rarely miss a dose.  I work out 3 times a week and eat pretty well.  I was diagnosed at 180 CD4s and VL > 100k. 
Sam

Truvada
Invirase
Norvir
Tricor
Crestor
Testosterone Cyp. 1.5 cc month inject
Lexapro 5 mg (I have no idea why she put me on this; I'm not depressed I don't think)


I had 16 t-cell in October of 03.  I've been on meds, since that time, or just slightly over 6 years myself.

I've never reached 400 t-cells .  Not quite sure if I ever will.  Mine, mostly test in the low to mid 300 range , with a percentage anywhere from 11 to 14%

The only meds I am currently on are Viramune and Epzicom.  I stopped taking Viread just about one week ago.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline SouthSam7

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  • Posts: 428
Re: WTF? six years on ARVs and CD4s still below 400...
« Reply #12 on: October 25, 2009, 02:02:02 PM »
Thanks, everybody.


 


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