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Author Topic: to start meds or hold off....  (Read 2443 times)

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Offline ALH300

  • Member
  • Posts: 69
  • Some days ur the bug other days ur the windshield!
to start meds or hold off....
« on: October 29, 2009, 10:55:54 AM »
A friend of mine was told by her doctor that she needs to finally start meds. Her numbers have always been good, cd4 between 500 and 700, cd4 percentage between 25 and 30 and viral load never over 5000.Her last labs were cd4 326 cd4% 26 and viral load 3500. I feel the doctor is jumping the gun due to the high percentage she has and cd4's can vary a great deal from day to day. I told her she should call the doc back and tell him that she wants to either wait until her next labs and she what her numbers are or have them retest in a month. Does anyone have any input? Thanks in advance!!!
Poz 7-27-07 
First Labs:
07/13/2007 "Friday the 13th" What was I thinking???
314 CD4 17% 9410 VL
10/03/2007
479 CD4 18% 8220 VL
01/03/2008
493 CD4 22.5 % 5900 VL
03/18/2008
432 CD4 14.4 % 11,830 VL
05/06/2008
480 CD4 15.0% 2630 VL
07/16/2008
361 CD4 16.4% 12,830 VL
10/31/2008
362 CD4 15.5% 2500 VL
Started Atripla 11-17-2008
1/16/2009
395 CD4 20.5% undect. VL
5/05/2009
426 CD4 20.3% undect. VL
9/15/2009
422 CD4 22.2% undect. VL

Offline dixieman

  • Member
  • Posts: 889
Re: to start meds or hold off....
« Reply #1 on: October 29, 2009, 04:15:36 PM »
Well if she has insurance... I'd say start the meds... if she does not have insurance? she needs to start applying for adap... etc... but, with her cd4's decreasing and her viral load increasing if I was in her present shoes... I would start taking meds.. but, thats just me.

Offline Nashvegas

  • Member
  • Posts: 196
Re: to start meds or hold off....
« Reply #2 on: October 29, 2009, 06:34:45 PM »
I'd start if I were in he shoes, knowing what I now know.  I'm doing fine on meds -- got to undetectable really quickly and have had no negative side effects -- but my CD4 count just isn't rising as quickly as I'd like it to.  Just to be on the safe side, I'd start...
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
Re: to start meds or hold off....
« Reply #3 on: October 29, 2009, 06:52:08 PM »
I feel the doctor is jumping the gun due to the high percentage she has and cd4's can vary a great deal from day to day...Does anyone have any input? ...

I'd wait until VL > 100k and/or CD4 <350, with or without fluctuation. Why? Bone loss, wear and tear on major organs. I'm currently on meds because I passed the thresholds above.

Treat when needed. It's a medical decision, not an "insurance" or coverage decision.
 
8)  -megasept

Offline rioz

  • Member
  • Posts: 54
Re: to start meds or hold off....
« Reply #4 on: October 29, 2009, 07:21:45 PM »
Hi ALH300,

My opinion, from a person who waited too long, is to start the meds. It seems very clear that optimal cd4 recovery is directly related to starting meds at higher cd4 levels.  Secondly, the virus is doing more damage to the thyroid, testis (in men, of course) etc. when at detectable levels. Lastly, what the fuck do I know, I'm not a doctor! How often is she doing blood work?  Has she had any HIV related complications? I think a patient needs to be able to trust their doctor.

Good Luck,
Richard
Living with HIV since 1985
Living with AIDS since 2007

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

Offline Tempeboy

  • Member
  • Posts: 358
  • Like St Francis of Assisi I am wedded to Poverty
Re: to start meds or hold off....
« Reply #5 on: October 29, 2009, 08:51:53 PM »
ALH300,

It's certainly a good time to consider starting, and even preparing - but there doesn't seem to be any urgency ( in the absence of other information anyway ). 

There are a number of factors to consider:

1. CD4 count - starting between 350 and 500 or even higher can prevent health issues related to impaired immunity, and allow greater immune recovery - so she will be healthier for longer.

2.  Viral load - meds protect many body systems by reducing the virus to undetectable levels.  From the time of transmission the virus is affecting the heart, brain, nerves, lungs, bones, liver, kidneys, skin etc.  Starting now will help prevent any of these health issues developing in the long term.

3.  Percentage - this is fine - but a consistantly low percentage could indicate a problem with immunity.

4.  Presence of chronic HIV related health issues independant of the above - like recurring chest infections, shingles or other.

5.  Most important - when the individual is ready.  The best predictor of successful treatment is the psychological preparedness of the person taking meds.

Your friend certainly has time to think about what she would prefer to take (once or twice a day, food restrictions, medication interactions, refrigeration, no of pills etc). 

Your friend might like to get her doc to suggest a couple of combo's and start weighing up the pro's and con's for each - to see which will suit her best.  She could then ease into the idea with as little stress as possible.

Link to cool resource for women - http://napwa.org.au/resource/treat-yourself-right
Roughly roundabout somewhere in the eighteenth or nineteenth century, Sodomite begat Homosexual out of moral, medical and legal models, bequeathing him Identity, who inbred with Nuclear Family and Industrialism to spawn Homophobia.

Dean Kiley

Offline SecretKeeper

  • Member
  • Posts: 52
Re: to start meds or hold off....
« Reply #6 on: November 01, 2009, 12:35:16 AM »
Hello all!  I am the friend in question here so I wanted to provide a couple of more details (that may or may not matter) ...
My labs previous to these were 4 months ago.  (This set of labs in October was almost exactly 2 years after diagnosis.)
I don't even remember my VL because I don't think it's ever been over 5000 so I figure it's not for me to worry about.  (I've got enough on my plate) 
My CD4 in June was 597 so the drop this month to 327 was quite the shock. 
My percent has remained consistant around 25%.

My friend who started the post was told he didn't have to start meds because your CD4 can fluctuate 100 even within one day and he had been in the 300s for months before he had started.  He finally started due to his declining CD4 percentage.

So I told my doctor I wasn't comfortable starting without getting at least a second test to make sure the 270 drop wasn't a "blip".  After all - I was up all night before my labs were done caring for a sick child - so maybe I was just worn down.?

So I'm left in this quandary - do I go by my percentage or by my actual CD4 count?  I guess I'm just freaked that I can drop almost 300 in a few short months.  What happens if I go back next month and surprise! - I'm at 200!  I've been feeling good so I had no idea that my immune system was under such an attack to fall that much.

Anyway, it's been almost 2 years since I've been on here.  2 years ago everyone helped so much with getting through the diagnosis that I really appreciate your advice on sifting through this dilemma.   :-*

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: to start meds or hold off....
« Reply #7 on: November 01, 2009, 03:18:09 AM »

I personally would wait for at least one more set of labs.  In fact, I might be tempted to have labs more often than every four months--just for a short time, in the near future, to find out whether this drop is a blip or a trend.  If you were to go back next month and get a result of 200, that would be a stronger argument for starting meds. 

From what my doctor says, CD4 counts are extremely sensitve to stress, time of day, and other factors, so that having been up all night caring for a sick child might very well have had a lot to do with it. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline BlueMoon

  • Member
  • Posts: 665
  • Calling from the Fun House
Re: to start meds or hold off....
« Reply #8 on: November 01, 2009, 06:04:32 AM »
I think the CD4 count is more significant than the percentage. 

Nestor's advice to get tested again in a month or two, instead of four, sounds good.  If the count doesn't improve significantly then it may be time to take the plunge.
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline veritas

  • Member
  • Posts: 1,410
Re: to start meds or hold off....
« Reply #9 on: November 01, 2009, 06:32:56 AM »

Here's a link to take into consideration while making your decision:

http://aids.about.com/od/treatmentquestions/f/startmeds.htm

v

Offline weasel

  • Member
  • Posts: 1,670
Re: to start meds or hold off....
« Reply #10 on: November 01, 2009, 08:41:56 AM »
Hi ALH300,

My opinion, from a person who waited too long, is to start the meds. It seems very clear that optimal cd4 recovery is directly related to starting meds at higher cd4 levels.  Secondly, the virus is doing more damage to the thyroid, testis (in men, of course) etc. when at detectable levels. Lastly, what the fuck do I know, I'm not a doctor! How often is she doing blood work?  Has she had any HIV related complications? I think a patient needs to be able to trust their doctor.

Good Luck,
Richard
  I'm with  Richard on this !
              I felt GREAT  even at a low CD-4 count .  Getting the " You have AIDS "  speech is very disturbing !
              I say Start the MEDS BEFORE the damage is done .

                                           Be well ,
                                                              Carl

   P.S. truvada / rayataz / norvir / Trazadone ,for sleep  8)
" Live and let Live "

Offline Nestor

  • Member
  • Posts: 430
  • What we love, we shall grow to resemble.
Re: to start meds or hold off....
« Reply #11 on: November 02, 2009, 01:11:10 PM »

Hi Carl,

Could you explain a bit more please?  You say that you felt great even at a low t-cell count--do you mean before or after starting the meds?  I don't understand whether that you're saying that feeling great is no criterion for starting or delaying meds, or whether you're reassuring us that we can feel great after we start.  And you write "Start the meds before the damage is done."  Specifically what damage? Thank you. 
Summer 2004--became HIV+
Dec. 2005--found out

Date          CD4    %       VL
Jan. '06    725    25      9,097
Nov. '06    671    34     52,202
Apr. '07    553    30      24,270
Sept. '07  685    27       4,849
Jan. '08    825    29       4,749
Mar. '08    751    30     16,026
Aug. '08    653    30       3,108
Oct. '08     819    28     10,046
Jan '09      547    31     13,000
May '09     645   25        6,478
Aug. '09    688   30      19,571
Nov. '09     641    27       9,598
Feb. '10     638    27       4,480
May '10      687      9    799,000 (CMV)
July '10      600     21      31,000
Nov '10      682     24     15,000
June '11     563    23     210,000 (blasto)
July  '11      530    22      39,000
Aug '11      677     22      21,000
Sept. '12    747     15      14,000

Offline mecch

  • Member
  • Posts: 11,512
  • red pill? or blue pill?
Re: to start meds or hold off....
« Reply #12 on: November 02, 2009, 01:27:51 PM »
There are more factors to consider besides numbers, as to when to start HAART. You only shared her numbers with us.  I'd disregard all this advice here from complete strangers, based on numbers only, and ask her why or why not she and her doctor will consider HAART at this moment.
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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