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Author Topic: The Story So Far....  (Read 1764 times)

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Offline NewYorkKat

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  • Posts: 134
  • Hangin' On Staying Strong
The Story So Far....
« on: November 17, 2009, 04:08:13 PM »
Well with my numbers around October 10 with a CD4 count of 294 at 12% and a VL at 17030, my doc decided to draw another round of blood to see if I was having a downward trend.

So on November 10, CD4 was 371 and 16% and VL down to 13,000.

I felt I should wait because of a few factors: I had a bad cold and a week prior to the October 10 blood drawing, I had a flu shot.

My doc thinks I should wait as well. She said if the numbers were continue to drop, meds would be the answer.

Any thoughts? Did I make the right decision to "wait and see"?

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: The Story So Far....
« Reply #1 on: November 17, 2009, 04:20:10 PM »
Well, of course it's your decision, but if it was me I'd probably be going on meds.  Yes, your numbers went up since last month but they're still in low territory.  Not AIDS-y territory, but definitely at the low end of where one now sees as recommended treatment start:

http://www.aidsmeds.com/articles/hiv_european_guidelines_1667_17592.shtml

Exactly what criteria are you using in your head for this "wait and see" thing?  Meaning exactly what numbers are you waiting for to commence treatment?
"Iíve slept with enough men to know that Iím not gay"

Offline skeebo1969

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Re: The Story So Far....
« Reply #2 on: November 17, 2009, 04:23:03 PM »

  I would have waited also... atleast wait and see what this next lab draw is.  Some people think it's best to start early now and there are even some studies that seem to support doing so, and you seem to be right at the borderline for when docs recommend starting meds so I think you made the right decision for yourself.  
I despise the song Love is in the Air, you should too.

Offline NewYorkKat

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Re: The Story So Far....
« Reply #3 on: November 17, 2009, 04:34:46 PM »
well I am asymptomatic and I take real good care of myself. I know about starting meds early but wished I started them when I first got diagnosed. Now I figure, just wait.

If the next round of numbers stay where they are, I most definitely will start meds. I will, however, avoid Atripla since that Sustiva part of the drug is not something I find nice.

So the next 3 months are very crucial for me and will determine the outcome.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: The Story So Far....
« Reply #4 on: November 17, 2009, 04:34:48 PM »
 I would have waited also... atleast wait and see what this next lab draw is.  Some people think it's best to start early now and there are even some studies that seem to support doing so, and you seem to be right at the borderline for when docs recommend starting meds so I think you made the right decision for yourself.  

Actually if you read the link I provided below you'll see that the "some studies" you mention have been upgraded to actual guidelines effective today in the EU, and that same link mentions the US will adopt the same thing this winter (so that's a bit imminent, no?).  Basically going by that, and if NewYorkKat waits another month for one more set of numbers it won't really change anything by doing so unless suddenly his numbers explode upwards to +500, and I don't see that happening.  It's not like 294 and 371 are all that different in the first place.

If this new set of numbers today had been +500 then I'd have said it's feasible to wait.  Otherwise it just seems like delaying the inevitable.  I'd at least say be mentally prepared to start medication after the next set of numbers if you're going to wait, but I figured after three years since his diagnosis he's had enough time to already have done that.
« Last Edit: November 17, 2009, 04:36:44 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline NewYorkKat

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Re: The Story So Far....
« Reply #5 on: November 17, 2009, 04:37:59 PM »
The article states that people who live with t cells 35- to 500 and have underlying conditions like Hep C for example should be on meds and I totally agree. I do, however, have no other underlying conditions unless you want to include ADHD.

Let's see where I stand next month.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: The Story So Far....
« Reply #6 on: November 17, 2009, 04:54:09 PM »
Yeah, but it also recommends the same guidelines if you've dropped 50 cells per year, unless I'm reading something incorrectly with it.
"Iíve slept with enough men to know that Iím not gay"

Offline leese43

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  • Posts: 257
Re: The Story So Far....
« Reply #7 on: November 17, 2009, 05:09:04 PM »
I'm reading that as saying..those who have VL's above 100k and experience a cd4 decline of 50 cels per year. I could be wrong though.
Oct 04 - Neg
Aug 05 - infected
Oct 05 - cd4 780, vl 60k
Apr 08 - cd4 430, vl 243
Jul 08 - cd4 550, vl 896
Nov 08 - cd4 730, vl 1.8k
May 09 - cd4 590, vl 1.5k
Sep 09 - cd4 460 vl 34k
Dec 09 - cd4 470 vl 42k
April 10 - cd4 430 vl 88.5k
July 10 - cd4 330 vl 118k
Aug 10 - started reyataz/truvada/norvir
Aug 10 - cd4 380 vl 4k (12 days after starting meds :))
Sep 10 - cd4 520 vl 1.5k
Oct 10 - cd4 590 vl 44
Jan 11 -cd4 610 vl <40 cd4% 50
May 11 - cd4 780 vl UD

Offline mecch

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  • red pill? or blue pill?
Re: The Story So Far....
« Reply #8 on: November 17, 2009, 05:12:29 PM »
No numbers posted. How many years HIV+?
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline NewYorkKat

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  • Hangin' On Staying Strong
Re: The Story So Far....
« Reply #9 on: November 17, 2009, 05:29:12 PM »
a little over 3 years

Offline BlueMoon

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  • Calling from the Fun House
Re: The Story So Far....
« Reply #10 on: November 17, 2009, 06:18:28 PM »
I think with those recent test results you would do well to be on meds now.

On the other hand I doubt you're putting yourself in imminent danger by waiting.

The advice from where I sit - CD4 count of 277 after twenty months on meds - is to not wait much longer unless you get a dramatic improvement in the meantime.  You know you have to do it sooner than you want to anyway, and better to rebuild the immune system while it's still relatively intact.  Don't let all that good care you've been taking of yourself go to waste.
...................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 skeebo1969

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  • Posts: 5,705
Re: The Story So Far....
« Reply #11 on: November 17, 2009, 10:51:18 PM »
Actually if you read the link I provided below you'll see that the "some studies" you mention have been upgraded to actual guidelines effective today in the EU, and that same link mentions the US will adopt the same thing this winter (so that's a bit imminent, no?). Basically going by that, and if NewYorkKat waits another month for one more set of numbers it won't really change anything by doing so unless suddenly his numbers explode upwards to +500, and I don't see that happening.  It's not like 294 and 371 are all that different in the first place.

If this new set of numbers today had been +500 then I'd have said it's feasible to wait.  Otherwise it just seems like delaying the inevitable.  I'd at least say be mentally prepared to start medication after the next set of numbers if you're going to wait, but I figured after three years since his diagnosis he's had enough time to already have done that.

You are right, I'm from the not so old school of 5 years ago guidelines I guess. ;)  I am kind of comparing his mindset to my own when I was about to start meds, meaning I understand why he feels the need to wait.  Not saying it is the right thing to do necessarily, but if his doc is going to monitor it over the next 3 months he should be OK.  Regarding the Cd4 explosion, I wouldn't rule it out.  Mine jumped from 391 to 600+ in three months.  Problem was my viral load went from 30 k to 290,000 also.  My labs never seemed quite right as far as patterns went back then, of course the way I stressed over everything at the time probably impacted me more than anything else.

NYKat, as Miss P. suggested I would definitely take this time to start mentally preparing myself for what perhaps could well be happening at your next Dr. visit.
I despise the song Love is in the Air, you should too.

Offline aztecan

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  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: The Story So Far....
« Reply #12 on: November 18, 2009, 12:38:29 AM »
One of the reasons doctors, including mine, are starting people earlier is they are seeing too many people whose CD4s are pegged at a low level, say 250 to 300.

They are not progressing to more severe conditions, but neither are they thriving.

This isn't universal (is anything with HIV universal?), but it is more common than I would have suspected a few years ago.

Mind you, I am basing this on the anecdotal evidence provided me by my doctor. I don't have study statistics to back it up.

Of course, the other side of the coin is the potential of side effects from the meds.

But, from what I have seen, people who begin prior to having substantially fewer T-cells also seem to have fewer side effects. Again, this is anecdotal, but one I have observed personally.

They also avoid any risk of IRIS, which can be a real pain.

I should mention Kat isn't at a level where IRIS should be a problem at this time.

I agree with Philly. Were it me, I would be on meds.

Just as an aside, the standard of care used to be once the T-cells dropped below 500, the subject of meds was raised. The viral load wasn't even an issue. That is what happened to me, and I have now been on meds for 13+ years.

HUGS,

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

Offline NewYorkKat

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  • Posts: 134
  • Hangin' On Staying Strong
Re: The Story So Far....
« Reply #13 on: November 18, 2009, 09:47:42 AM »
Well I guess you are right. I am ready for meds but want to make sure i will take the right ones. I just took a genotype test and will see where I stand. Once i get the info, i will notify my doctor to start meds.

thanks for the feedback and honesty.

Offline Denver Toad

  • Member
  • Posts: 160
Re: The Story So Far....
« Reply #14 on: November 18, 2009, 10:07:35 AM »
Good decision NYK. I'm one of those that Mark makes a correct, for me, anecdotal connection. Started meds when first diagnosed. CD4's were sub 100, can't recall the exact number, regardless I've yet to break the 250 mark. Best to date is 236, I'm back down to 162 as of last week. Feel fantastic, been undetectable for five years, healthy as can be, no side effects, and have never had an OI, just can't my CD's up. Would starting meds earlier have made a difference? I'll never know. But I'd rather give my systems the best chance at recovery I can and start as early as practically possible.

Good luck w/ all.
Todd
Life is short, Break the rules, Forgive quickly,
Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

 


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