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Author Topic: Early Starting meds cd4 around 500? desisions desisions  (Read 2857 times)

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Offline NLEWLAD

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Early Starting meds cd4 around 500? desisions desisions
« on: November 09, 2008, 08:55:27 PM »
i have read lots of recent literature about starting meds when cd4 drops to 500   

i am nearly 12 months poz  not been tested for about 3 months and am gona book into my g.u.m clinic tomorrow for bloods done,

i can adhere to the meds and am not resistant to any meds


if you had the choice like i do would you start early 


i am lucky that my hiv consultant is willing to script when i want  and i am in the uk and dont have to pay for any meds

what would you do  in my situation?

« Last Edit: November 09, 2008, 09:00:41 PM by NLEWLAD »
Simon - Location Manchester England
Negative test 10/11/07
Tested poz 28/12/07
Confirmed WB 07/01/08
Sero-converted Late December 07

Date        CD4            %              VL

7/01/08   1273 :)      N/A       100,232
24/01/08   755 :(      42%         4,010
13/2/08     922 :)      45%       78,234
09/04/08   652 :(      38%       36,604
05/05/08   936 :)      39%       38,952
07/07/08   844 :)      34%       24,000
12/11/08   753 :(      31%       45,600
no meds yet:)

Offline megasept

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  • Steven here...
Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #1 on: November 09, 2008, 09:28:47 PM »
i have read lots of recent literature about starting meds when cd4 drops to 500   

if you had the choice like i do would you start early 


i am lucky that my hiv consultant is willing to script when i want  and i am in the uk and dont have to pay for any meds

what would you do  in my situation?


hi. I don't believe that threshold represents the current (near) consensus; I'd probably wait in your case until CD4s <300/350 or VL > 100k. I don't quite get your #s above, and of course you need to get blood work right before starting meds anyway. If you are consistently over 100k that might mean start now. But In my case the CD 4 criteria difference (500 CD4 vs. 300 CD4) would have been many years, not a matter of months, before starting meds. I am on meds now, Insentress + Truvada. Great you're doing this research and have UK medical care.

 8)  -megasept

« Last Edit: November 09, 2008, 09:32:28 PM by megasept »

Offline Longislander

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #2 on: November 09, 2008, 09:30:20 PM »
Hi Nlewlad,

you're #'s are very nice right now, and hopefully on your next draw they'll be similar~

It's definitely a personal decision to make to start meds at 500.  You can see below my sig that I started around that #. Glad I did.

Good luck with the labs

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline NLEWLAD

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #3 on: November 09, 2008, 09:42:09 PM »
thanks for the quick responses

am now looking forward to my next bloods   -  i feel like i have the option to be  a  guinea pig   and start meds quite early i feel that if they have droped significantly since my last results   then i am gona start meds

i will if people want start an early med starter blog, 

simon

x
Simon - Location Manchester England
Negative test 10/11/07
Tested poz 28/12/07
Confirmed WB 07/01/08
Sero-converted Late December 07

Date        CD4            %              VL

7/01/08   1273 :)      N/A       100,232
24/01/08   755 :(      42%         4,010
13/2/08     922 :)      45%       78,234
09/04/08   652 :(      38%       36,604
05/05/08   936 :)      39%       38,952
07/07/08   844 :)      34%       24,000
12/11/08   753 :(      31%       45,600
no meds yet:)

Offline joemutt

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #4 on: November 09, 2008, 11:51:33 PM »
hi. I don't believe that threshold represents the current (near) consensus; I'd probably wait in your case until CD4s <300/350 or VL > 100k. I don't quite get your #s above, and of course you need to get blood work right before starting meds anyway. If you are consistently over 100k that might mean start now. But In my case the CD 4 criteria difference (500 CD4 vs. 300 CD4) would have been many years, not a matter of months, before starting meds. I am on meds now, Insentress + Truvada. Great you're doing this research and have UK medical care.

 8)  -megasept



Would you think it s wise to start meds based on a VL over 100 000 (say 160 000) and a CD 4 at 680?
This confuses me a little can a high VL on itself be a reason to start meds?
Thanks Joe

Offline David_CA

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #5 on: November 10, 2008, 09:19:10 AM »
hi. I don't believe that threshold represents the current (near) consensus; I'd probably wait in your case until CD4s <300/350 or VL > 100k. I don't quite get your #s above, and of course you need to get blood work right before starting meds anyway. If you are consistently over 100k that might mean start now. But In my case the CD 4 criteria difference (500 CD4 vs. 300 CD4) would have been many years, not a matter of months, before starting meds. I am on meds now, Insentress + Truvada. Great you're doing this research and have UK medical care.

 8)  -megasept

I don't know that I'd agree with that.  I had CD4's just a bit under 300 and a viral load of 100,000+... and PCP pneumonia.  I've been reading that new studies find that folks starting meds with a CD4 count of around 500 do much better in terms of viral suppression and CD4 increases.  Of course, it's all a guessing game to an extent.  If one has a CD4 count of, say, between 400 and 500 over many years, starting meds immediately may not be warranted.  Personally, I'd look at the 500 mark as time to start seriously thinking about meds and the 350 mark as time to start assuming a fairly rapid increase in viral count and/or decrease in CD4 numbers.
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 BT65

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #6 on: November 10, 2008, 01:16:55 PM »
It's really a very personal decision, imo.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Queen Tokelove

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #7 on: November 10, 2008, 02:39:59 PM »
I didn't start meds til my cd4 dropped to 215 but that was my choice. My viral load has never been higher than I think 80,000 but don't quote me on that. Yeah, I waited and in some respects, I am glad that I did because the meds were doing a number on my liver.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline megasept

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  • Steven here...
Re: Early Starting meds cd4 around 500? dcsisions decisions
« Reply #8 on: November 10, 2008, 03:04:59 PM »
Would you think it s wise to start meds based on a VL over 100 000 (say 160 000) and a CD 4 at 680?
This confuses me a little can a high VL on itself be a reason to start meds?
Thanks Joe

Joe: Yes, probably. Sorry I cannot be more sure than that. I believe VL is less important than CD4 levels. The formula above does mean a high VL alone could warrant treatment. To what degree and what #, is still sketchy. Is it better to have 400 CD4/800k VL or 250 CD4/70k VL? I wish I knew.

For new or recent poz, I would suggest (with your MD's input) you wait months until you reach stable levels. I understand these first #s might be scary, but early #s, weeks apart, their direction and fluctuations, may have little long-term meaning.

8) -megasept

« Last Edit: November 10, 2008, 03:24:50 PM by megasept »

Offline megasept

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  • Steven here...
Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #9 on: November 10, 2008, 03:21:48 PM »
thanks for the quick responses

am now looking forward to my next bloods   -  i feel like i have the option to be  a  guinea pig   and start meds quite early i feel that if they have droped significantly since my last results   then i am gona start meds

i will if people want start an early med starter blog, 

simon

x
Simon:

We are ALL guinee pigs because no matter what we do or don't do, unless you have a hated identical twin you'd like to donate to science---a control group of one.---we'll never know for sure. I think "early starters", and newly diagnosed with big decisions to make, might benefit from reading experiences and opinions of those of us who waited, have done OK long-term, and are wary of rushing into early treatment when not medically warranted (Some patients need meds right away). So I guess I don't favor a separate forum beyond those we already have for those being treated (I am also being treated right now) and for the newly diagnosed.

8) -megasept



« Last Edit: November 10, 2008, 03:24:04 PM by megasept »

Offline megasept

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  • Steven here...
Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #10 on: November 10, 2008, 03:35:49 PM »
...Personally, I'd look at the 500 mark as time to start seriously thinking about meds and the 350 mark as time to start assuming a fairly rapid increase in viral count and/or decrease in CD4 numbers.

David: RE: the 350 mark, I experienced exactly that, after years of slow decline and flat periods from high CD4s, the rate of decline increased until it dipped to 280 CD4. Also, my VL was growing faster, nearly reaching 100k, at the same moment. Almost a model for the <300 CD4, >100k formula.

 8) -megasept


Offline jennynyc7

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #11 on: November 10, 2008, 03:46:50 PM »
I started meds with a cd4 of 585(ish) and vl of about 95,000. I took both "arguments" ( pros and cons of starting early -vs- waiting for cd4 to get to lower) into consideration along with the fact that my boyfriend at that time was starting meds too so the Dr recommended us to start at the same time on the same regimen.  My cd4 went up drastically within a month on treatment and is now above 1100. Is that because I started meds early (withing months of infection too) ? I guess we may never know for sure.
12/24/07-infected
1/3/08-ARS began
2/12/08-diagnosed
Initial Vl=99000
CD4=585
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
                cd4=1250
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)
                cd4=1234

Offline NLEWLAD

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #12 on: November 11, 2008, 03:44:19 PM »
UPDATE,

had my bloods done,   and discussed with hiv doc  about starting early,  she said she would script when cd4 is below 500 but not above, (unless i have a vl over 150k, or contract hep c) i am happy with that.

results in a few days, will update this thread when i get the results
Simon - Location Manchester England
Negative test 10/11/07
Tested poz 28/12/07
Confirmed WB 07/01/08
Sero-converted Late December 07

Date        CD4            %              VL

7/01/08   1273 :)      N/A       100,232
24/01/08   755 :(      42%         4,010
13/2/08     922 :)      45%       78,234
09/04/08   652 :(      38%       36,604
05/05/08   936 :)      39%       38,952
07/07/08   844 :)      34%       24,000
12/11/08   753 :(      31%       45,600
no meds yet:)

Offline bufguy

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #13 on: November 12, 2008, 11:25:16 AM »
My doc recommended I start with my numbers of CD4 511, and vl of 47500. I had just tested positive 1 month before and was shocked when he recommended I start meds.
His rationale was that I was educated and motivated.
Now, the more I read, the happier I am. I think waiting for my numbers too inevetabley fall woould have been nerve racking. I feel I am taking control of the virus, hitting it hard and staying healthy.

No regrets here.
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline alkebu

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #14 on: December 02, 2008, 03:58:12 PM »
The way Ii see this is , why comprise? Why wait until your system is in danger before you started your meds? I personally don't think that is a good decision. ::)

Offline alkebu

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #15 on: December 02, 2008, 04:05:36 PM »
As soon as I found out I was Poz. I was ready to start my meds even though my numbers were good. I also have HCV, which I have to begin treatment for. That why it was important for me to started my HIV meds early,  just to get it under control so I can better deal with my HCV.

Offline mecch

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #16 on: December 02, 2008, 04:17:53 PM »
Get two opinions, meaning from different doctors...  There's a noted specialist in Switzerland who treats  on seroconversion.  Like they used to do 5 years ago.  He says we have come around to that again.  Another noted ID waits for the typical ratios...   

Who knows?

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jkinatl2

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #17 on: December 02, 2008, 04:40:58 PM »
Honestly? If you can afford it, and have the discipline for the adherence, why not?

With new combos, and a plethora of choices, side effects can be minimal. And better to make switches and have med drama now, than when also in the midst of medical crisis.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline aztecan

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #18 on: December 02, 2008, 09:11:38 PM »
I started when my T-cells dropped to the 440 range. Back then(1996), the standard of care here in the U.S. was to start meds when your CD4s dropped below 500.

Viral loads had only been around about six months when I started meds. But, my viral load had gone up from about 11,000 to about 50,000, if memory serves.

I have no regrets about starting meds then. I have side effects now, but those also were the first generation of PIs and some of the oldest nukes.

As Betty put it, this is a personal decision. But, were I to make it again, I would most likely choose to start earlier rather than waiting for my immune system to suffer more damage than it had already.

HUGS,

Mark

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

Offline madbrain

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #19 on: December 02, 2008, 10:07:15 PM »
i have read lots of recent literature about starting meds when cd4 drops to 500   

i am nearly 12 months poz  not been tested for about 3 months and am gona book into my g.u.m clinic tomorrow for bloods done,

i can adhere to the meds and am not resistant to any meds


if you had the choice like i do would you start early 


i am lucky that my hiv consultant is willing to script when i want  and i am in the uk and dont have to pay for any meds

what would you do  in my situation?



I think you need to look not just at the lab numbers, but also about how you feel.

Have you had any illnesses since you seroconverted that you didn't used to go, or that your doc thinks may be attributed to the HIV ? If so, it may be wise to consider starting meds.

Looking at just your labs, it seems that your CD4, both absolute count and percentage, are on a quick declining path. The average decline is only about 40 to 80 CD4 cells per year absolute count, but your decline seems much worse. With your VL, it's not really all that surprising that they are going down. They will probably just go down some more if you just wait. If I were you, I would give it a serious thought to starting now.

If you weren't seeing a decline, with your current numbers, it would be a much tougher call. Indeed, I have very good labs, no notable CD4 absolute count or percentage decline to speak of in 2 years, and a VL that's almost naturally suppressed. But I have had some illnesses that are not really easily explainable. Some have come and gone (like fatigue). I just came back from seeing my primary doctor (HIV specialist) today. He is still looking for the root cause. But he said it might make sense even for me to start HIV treatment early based on recent symptoms, and not based on my labs. I'm still waiting on some more tests, but it it is a very tough call for me to think about starting HAART now. I can certainly afford the cost of the treatment and to adhere to it. I'm less sure about long-term side effects since I would have to be on HAART for about 40-50 years and nobody has been on it for that long.

Offline isitthatbad

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Re: Early Starting meds cd4 around 500? desisions desisions
« Reply #20 on: December 07, 2008, 03:50:59 PM »
my CD4 result dropped from 610 to 459 result in nov i have a nother bloods appt in dec, i am anticipating my consultant saying to me in janury to start meds as i have been suffering reoccuring tonsilitus and feeling washed out i am scared as i have only had this since april 07 :'(

 


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