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Author Topic: Meds: The longer you wait to start...  (Read 1967 times)

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Offline newbie76

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  • Posts: 238
Meds: The longer you wait to start...
« on: May 15, 2007, 02:08:34 PM »
Hello!
I was reading some factsheets about CD4 counts from one of the top HIV clinics in London and I found this information:

"One effect of anti-HIV drugs is to improve the state of your immune system. This is crudely reflected
in an increase in your CD4 count. The cells’ ability to fight infections might also be improved.
However, over time anti-HIV drug therapies tend to become less effective, and the CD4 count falls
back to its ‘baseline’ starting level and may continue to drop
"

I find that quite scary and perhaps I am not interpreting it the right way. Does that mean that if one starts treament when his cd4 is less than 200 he's destined to go back to that level? And if this is the case, then why not start treatment earlier when the cd4 count is in its 400s?

This is the link:
http://www.chelwest.nhs.uk/documents/hiv_factsheets/CD4%20Cell%20Counts%202006.pdf
« Last Edit: May 15, 2007, 02:25:32 PM by newbie76 »
25th Apr 07: The worst day of my life
27th Apr 07: cd4 202 14%
30th Apr 07: cd4 126 18% VL 110000
19th May 07: Started Truvada/Sustiva
20th Jun 07: cd4 218 25% VL 435
13th Aug 07: cd4 374 20% VL 64
20th Dec 07: cd4 435 24% VL <50
20th Oct 08: cd4 725 31% VL <50
30th Nov 09: cd4 725 30% VL <50
01st Nov 10: cd4 755 33% VL<50
11th Nov 11: cd4 754 32% VL<50
01st May 12: cd4 864 40% VL<50
01st May 13: cd4 615 VL 609 :-/
14th May 13: VL <50

Offline blondbeauty

  • Member
  • Posts: 1,784
Re: Meds: The longer you wait to start...
« Reply #1 on: May 15, 2007, 03:00:25 PM »
That is why since January of this year Drs are recommending to star treatment earlier.
http://www.aidsmap.com/en/news/A6015612-7487-474E-950F-3615863437C1.asp
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline newt

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  • the one and original newt
Re: Meds: The longer you wait to start...
« Reply #2 on: May 15, 2007, 06:22:29 PM »
It's very old factsheet and basically inaccurate (on this CD fall back to baseline point)

- matt
"The object is to be a well patient, not a good patient"

Offline newbie76

  • Member
  • Posts: 238
Re: Meds: The longer you wait to start...
« Reply #3 on: May 16, 2007, 09:03:42 AM »
It's very old factsheet and basically inaccurate (on this CD fall back to baseline point)

- matt


Well, at the end of the factsheet it says it has been reviewed in February 2006 so it's only about 15 months old...
25th Apr 07: The worst day of my life
27th Apr 07: cd4 202 14%
30th Apr 07: cd4 126 18% VL 110000
19th May 07: Started Truvada/Sustiva
20th Jun 07: cd4 218 25% VL 435
13th Aug 07: cd4 374 20% VL 64
20th Dec 07: cd4 435 24% VL <50
20th Oct 08: cd4 725 31% VL <50
30th Nov 09: cd4 725 30% VL <50
01st Nov 10: cd4 755 33% VL<50
11th Nov 11: cd4 754 32% VL<50
01st May 12: cd4 864 40% VL<50
01st May 13: cd4 615 VL 609 :-/
14th May 13: VL <50

Offline milker

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Re: Meds: The longer you wait to start...
« Reply #4 on: May 16, 2007, 10:39:05 AM »
Hi newbie,

I think this factsheet's problem is that it's too "simple" and the phrases used are subject to confusion. For example when it says "tend to become less effective", it's not the drugs that are less effective, it's the virus that mutates so new drugs must attack the mutant. That's why people take a combo, so that the virus is attacked at different places and that prevents drastic mutations. Combos those days are very effective!

I've never heard about this "baseline". Look around here, and you will see people that have had bad responses to meds few years ago, and when those new magic drugs came out, their cd4 went back up, and the viral load undetectable.

You're "lucky" to have been diagnosed in 2007 with a manageable cd4/vl. I feel confident that you will be on the right track soon and get out of panic mode so that you can relax and breathe better :)

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline newt

  • Member
  • Posts: 3,877
  • the one and original newt
Re: Meds: The longer you wait to start...
« Reply #5 on: May 16, 2007, 10:44:47 AM »
Well I wonder if it was reviewed properly or "reviewed".  I will take this up with St Stephens/Chelseas & Westminster Hospital because it's wrong...

1. "One effect of anti-HIV drugs is to improve the state of your immune system."

<< Yes

"This is crudely reflected in an increase in your CD4 count."

<<  OK. But not everyone gets an increase and a few people get a decrease.  This needs pointing in the factsheet. It's wrong to simplify the facts too much, creates false expectations.

"The cells’ ability to fight infections might also be improved."

<< OK.

"However, over time anti-HIV drug therapies tend to become less effective, and the CD4 count falls back to its ‘baseline’ starting level and may continue to drop."

<< This is just plain wrong as it stands. It is not a given pharmacological or immunological outcome of current treatment for HIV infection.  The "over time anti-HIV drug therapies tend to become less effective" may be true if it is explained in terms of resistance developing which compromises how well the drugs work, which is of course by no means a certainty, indeed may never happen, especially if you are adherent to your meds.

Factsheets like this written by doctors who should know better are the reasons there are community activist and education outfits...good job too  :-\

- matt
"The object is to be a well patient, not a good patient"

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Meds: The longer you wait to start...
« Reply #6 on: May 16, 2007, 10:45:53 AM »
Exactly newbs.  The part you placed in bold is simply a broad theoretical statement that simply, more or less, says that if we take Patient A and place him on HIV Med #2 his immune system will improve, but over time it will eventually fail and need to be replaced with HIV Med #3.

That's all.  I'm sure by now you're aware that these meds are taken in various combinations to combat this situation, and once any combination fails you simply move on to the next one down the line.  The key here however is that before your numbers return to that theoretical baseline your doctors will switch you over to HIV Med #2 so that they do NOT go down to far.

I don't understand frankly why you're freaked out by this comment in the fact sheet.  It's simply a basic, very broad statement of how HIV treatment works.
"I’ve slept with enough men to know that I’m not gay"

Offline newbie76

  • Member
  • Posts: 238
Re: Meds: The longer you wait to start...
« Reply #7 on: May 16, 2007, 12:21:47 PM »
Exactly newbs.  The part you placed in bold is simply a broad theoretical statement that simply, more or less, says that if we take Patient A and place him on HIV Med #2 his immune system will improve, but over time it will eventually fail and need to be replaced with HIV Med #3.

That's all.  I'm sure by now you're aware that these meds are taken in various combinations to combat this situation, and once any combination fails you simply move on to the next one down the line.  The key here however is that before your numbers return to that theoretical baseline your doctors will switch you over to HIV Med #2 so that they do NOT go down to far.

I don't understand frankly why you're freaked out by this comment in the fact sheet.  It's simply a basic, very broad statement of how HIV treatment works.
I am freaked out because it gives a lot of emphasis to the point on what your cd4 count is when the meds are started, and mine is low!

What the factsheet seems to suggests is:
Patient A starts meds with a cd4 of 100. Patient B starts meds on the same day with a cd4 of 350. After 10 years of meds both patients have the same cd4 of 500 but because patient A started meds with a lower cd4 count he's more likely to get ill than patient B. So no matter how good my cd4 count is going to increase as soon as I start the meds, I'd always be worse off than if I had started the meds with a higher cd4 count.

This theory would also be supported by treatment breaks. Why they say that treatment breaks should only be considered by patients that have started treatment with a higher cd4 counts?
« Last Edit: May 16, 2007, 12:27:23 PM by newbie76 »
25th Apr 07: The worst day of my life
27th Apr 07: cd4 202 14%
30th Apr 07: cd4 126 18% VL 110000
19th May 07: Started Truvada/Sustiva
20th Jun 07: cd4 218 25% VL 435
13th Aug 07: cd4 374 20% VL 64
20th Dec 07: cd4 435 24% VL <50
20th Oct 08: cd4 725 31% VL <50
30th Nov 09: cd4 725 30% VL <50
01st Nov 10: cd4 755 33% VL<50
11th Nov 11: cd4 754 32% VL<50
01st May 12: cd4 864 40% VL<50
01st May 13: cd4 615 VL 609 :-/
14th May 13: VL <50

Offline Miss Philicia

  • Member
  • Posts: 23,904
  • celebrity poster, faker & poser
Re: Meds: The longer you wait to start...
« Reply #8 on: May 16, 2007, 12:33:41 PM »
It's still theoretical.  You have no way of really projecting where treatment will be in 2017 anyway.  If I had done this to myself in 1997 (i.e. 10 years ago) there's no way I'd be sitting pretty with the numbers I currently have.  These are still broad statements on this fact sheet you're reading, IMO.

I understand your anxiety though (read some of your older posts just now), as you're currently digesting a lot of information in your first month with HIV.
"I’ve slept with enough men to know that I’m not gay"

Offline newbie76

  • Member
  • Posts: 238
Re: Meds: The longer you wait to start...
« Reply #9 on: May 16, 2007, 12:48:42 PM »
It's still theoretical.  You have no way of really projecting where treatment will be in 2017 anyway.  If I had done this to myself in 1997 (i.e. 10 years ago) there's no way I'd be sitting pretty with the numbers I currently have.  These are still broad statements on this fact sheet you're reading, IMO.

I understand your anxiety though (read some of your older posts just now), as you're currently digesting a lot of information in your first month with HIV.
Can I ask you what are your numbers at the moment?
25th Apr 07: The worst day of my life
27th Apr 07: cd4 202 14%
30th Apr 07: cd4 126 18% VL 110000
19th May 07: Started Truvada/Sustiva
20th Jun 07: cd4 218 25% VL 435
13th Aug 07: cd4 374 20% VL 64
20th Dec 07: cd4 435 24% VL <50
20th Oct 08: cd4 725 31% VL <50
30th Nov 09: cd4 725 30% VL <50
01st Nov 10: cd4 755 33% VL<50
11th Nov 11: cd4 754 32% VL<50
01st May 12: cd4 864 40% VL<50
01st May 13: cd4 615 VL 609 :-/
14th May 13: VL <50

Offline newt

  • Member
  • Posts: 3,877
  • the one and original newt
Re: Meds: The longer you wait to start...
« Reply #10 on: May 16, 2007, 12:55:44 PM »
Your CD4 is about 200 right?

200 is the lowest recommended time for starting treatment, but it's not low.  450+ is normal. 300+ is functional.  50, 10 or 5  is low.

It is true if you stop treatment your CD4 tends to fall to the level it was before treatment.

The i-Base 'Introduction to combination therapy' may be a good read.  This has a section on treatment breaks too.   And you could ask one of the treatment advocates there a question, or questions, about any aspect of CD4 count, viral load, treatment via the i-Base Q & A service.

- matt (started treatment CD4 185 or so 2 years ago I think, CD4 now 400 or thereabouts) the newt
"The object is to be a well patient, not a good patient"

Offline newbie76

  • Member
  • Posts: 238
Re: Meds: The longer you wait to start...
« Reply #11 on: May 16, 2007, 01:03:11 PM »
Your CD4 is about 200 right?

200 is the lowest recommended time for starting treatment, but it's not low.  450+ is normal. 300+ is functional.  50, 10 or 5  is low.

It is true if you stop treatment your CD4 tends to fall to the level it was before treatment.

The i-Base 'Introduction to combination therapy' may be a good read.  This has a section on treatment breaks too.   And you could ask one of the treatment advocates there a question, or questions, about any aspect of CD4 count, viral load, treatment via the i-Base Q & A service.

- matt (started treatment CD4 185 or so 2 years ago I think, CD4 now 400 or thereabouts) the newt

Well, I am not sure really... on 25th April it was 202 but 5 days later was 126!! I guess it must be somewhere in between...
25th Apr 07: The worst day of my life
27th Apr 07: cd4 202 14%
30th Apr 07: cd4 126 18% VL 110000
19th May 07: Started Truvada/Sustiva
20th Jun 07: cd4 218 25% VL 435
13th Aug 07: cd4 374 20% VL 64
20th Dec 07: cd4 435 24% VL <50
20th Oct 08: cd4 725 31% VL <50
30th Nov 09: cd4 725 30% VL <50
01st Nov 10: cd4 755 33% VL<50
11th Nov 11: cd4 754 32% VL<50
01st May 12: cd4 864 40% VL<50
01st May 13: cd4 615 VL 609 :-/
14th May 13: VL <50

Offline newt

  • Member
  • Posts: 3,877
  • the one and original newt
Re: Meds: The longer you wait to start...
« Reply #12 on: May 16, 2007, 01:12:00 PM »
CD4 tests vary quite a bit (yes, this is in the facsheet and they got it right  :)) by time of day, etc etc, and the test can be +/- 50 on the result too.  Your CD4 % at 14-18% would suggest a CD4 count more around 200 than 130.

Your resistance test results should be back by now...or very soon

- matt
"The object is to be a well patient, not a good patient"

 


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