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Author Topic: When to start meds?  (Read 1630 times)

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Offline nuc

  • member
  • Posts: 2
When to start meds?
« on: March 16, 2010, 03:39:06 PM »
Hi there,

I'm new in the forum and I'm poz since April 2009; I was diagnosed during seroconversion just 3 weeks after the infection with a high VL (1.5M). These are my lab results since then:

04-2009: Day 0;
05-2009: VL 1.514.659; CD4 713, 11%;
07-2009: VL 172.783; CD4 799, 17%;
10-2009: VL 197.887; CD4 587; 19%.

I am taking no meds yet. Note that in the last tests, my CD4 cell count dropped around 200 in 3 months, although the percentage increased. My doctor said it wasn't time to start on meds yet because I hadn't reached the 350 level (now updated to 500, according to the new US therapy guidelines).
But I'm worried because my VL is still >100.000 and the CD4 count is decreasing far more then the "recommended" by those guidelines and my doctor scheduled the next appointment for almost 6 months later, which I think that's too much time, according to these results.

I'll do the next tests next week, and if the VL is still that high, isn't it preferable to start right now?
Anyone in the same situation?

Thanks!
04-2009: Day 0;
05-2009: VL 1.514.659; CD4 713, 11%;
07-2009: VL 172.783; CD4 799, 17%;
10-2009: VL 197.887; CD4 587; 19%.
No meds yet.

Offline aztecan

  • Member
  • Posts: 5,382
  • 29 years positive, 56 years a pain in the butt
Re: When to start meds?
« Reply #1 on: March 16, 2010, 06:21:24 PM »
Hey Nuc,

Welcome to the forums, though, sorry for the reason you joined.

The first year after infection, your body is still adjusting to the virus. That is why you started with such a high viral load and why it has dropped so significantly.

Your percentage is steadily increasing, which also is a good thing.

I wouldn't fret too much about the CD4s unless it continues to drop during the course of the next severa labs. What you want to see is a pattern to show you what course to take.

My CD4s used to bounce around a lot, up and down by 200 to 300 from one lab to the next. When they started to consistently drop, that was when meds came into the picture.

If your CD4s continue to drop, then I would have a heart-to-heart with your doctor. But I have a feeling you will see it bounce back for a while.

HUGS,

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

Offline Inchlingblue

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Re: When to start meds?
« Reply #2 on: March 16, 2010, 08:04:22 PM »
As far as what the Guidelines say, I thought this was a good explanation, from Dr. Joel Gallant, who sits on the panel that comes up with them:

Joel Gallant: First, let me just spell out what the guidelines say now. Everybody agrees that you should start below 500. The split there was only about whether people felt that it was a strong or a moderate recommendation. It was just a split on emphasis. Below 500 is where we recommend therapy overall.

But then half the panel felt that we should recommend therapy above 500 -- in other words, at any CD4 count. The other half of the panel didn't think that was wrong, necessarily, but they just felt that it was more optional. So that was where the split was.

But I interpret this to say that the guidelines now support treatment at any CD4 count, but just with a different sense of urgency, based on where your CD4 is. If it's very high, then it's less urgent. The lower it gets, the more urgent it is. And I certainly think that the stuff presented at CROI only supports that.

I can't say whether it will cause a change in the guidelines. I think that most likely the when-to-start issue will take a rest for a little while, before coming out with yet another revision so quickly. But I certainly think that the stuff we heard is supportive of what the guidelines panel came up with.


LINK:

http://www.thebody.com/content/art55738.html?getPage=3#dhhs

Offline WillyWump

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Re: When to start meds?
« Reply #3 on: March 16, 2010, 08:15:42 PM »
As far as what the Guidelines say, I thought this was a good explanation, from Dr. Joel Gallant, who sits on the panel that comes up with them:

Joel Gallant: First, let me just spell out what the guidelines say now. Everybody agrees that you should start below 500. The split there was only about whether people felt that it was a strong or a moderate recommendation. It was just a split on emphasis. Below 500 is where we recommend therapy overall.

But then half the panel felt that we should recommend therapy above 500 -- in other words, at any CD4 count. The other half of the panel didn't think that was wrong, necessarily, but they just felt that it was more optional. So that was where the split was.

But I interpret this to say that the guidelines now support treatment at any CD4 count, but just with a different sense of urgency, based on where your CD4 is. If it's very high, then it's less urgent. The lower it gets, the more urgent it is. And I certainly think that the stuff presented at CROI only supports that.

I can't say whether it will cause a change in the guidelines. I think that most likely the when-to-start issue will take a rest for a little while, before coming out with yet another revision so quickly. But I certainly think that the stuff we heard is supportive of what the guidelines panel came up with.


LINK:

http://www.thebody.com/content/art55738.html?getPage=3#dhhs

Very interesting Inch. Thanks

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Rev. Moon

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  • Posts: 3,782
  • Smart ass faggot
Re: When to start meds?
« Reply #4 on: March 16, 2010, 08:30:17 PM »
Nuc, first of all welcome to our world... sorry that you had join our pozzum minority, but glad that you found us nonetheless.

Your story sounds almost the same as mine: I was diagnosed almost a year ago while dealing with a dreadful acute HIV infection (three weeks after infection); my initial VL was around 1.5 million; my CD4% was a crappy 13%.  The only differences would be that my initial [absolute] CD4 were about 420-425 and that I started meds right away (my decision, not influenced by my ID doc or anyone else).  This is definitely not very orthodox and not something that I advocate; each person needs to weigh the pros and cons, and he/she needs to assess whether they are willing to adhere to whatever regimen that becomes their first line of treatment (I say willing 'cause there should be no significant difficulty at taking one pill or a couple of them daily).

From a personal standpoint, I have no regrets about my choice to start treatment as early as I did.  The side effects were minimal; I have enjoyed great numbers (within a couple of weeks the VL had dropped to less than 1,400 --and is now undetectable-- my CD4 values have increased slowly but consistently to a normal range), and I often forget that I have this critter somewhere in my body.

The choice is yours.  Discuss your options with your ID doc and make an educated decision.  There is no need to rush, but [as long as you can afford them and are ready to make the commitment] the meds are quite tolerable and they help you live a normal life.

Wishing you the best,

That Moon Guy.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline nuc

  • member
  • Posts: 2
Re: When to start meds?
« Reply #5 on: March 17, 2010, 06:14:39 PM »
Thank you all for your quick answers and for sharing your experiencies :)

I've been reading a lot about this issue and I'm worried about this fall in my CD4 count, although it's still high. I know this isn't linear, but what if it drops another 200 in 3 months ratio and now I'm at about a 100-200 count? Hopefully, it doesn't usually work that way, but it's just a scenario and I became worried when my doc made me wait 6 months instead of 2-4 like I see it's usual when untreated.

I even consulted another doc but it was pointless. For her, the only criteria applicable is the CD4 count bellow 350 and nothing else matters. The problem here, I think, is the viral load, it stopped dropping at arround 170k and now it just tends to increase again, according to a typical HIV progression. Being that high, it means more CD4 cells are being destroyed and with an increasing viral load, the speed of that process can get higher from day to day. Also, recent studies revealed that the presence of the virus can not only affect CD4 cells but also some organs and the nervous system.

That's why so many people choose to treat the infection as soon as possible and not to delay treatment.

During last months I've been thinking a lot about this. Next week I'll do my lab tests and in mid-april I'll know the results. If they confirm this "pattern", then there should be no other way than starting right now...

Thanks again!

04-2009: Day 0;
05-2009: VL 1.514.659; CD4 713, 11%;
07-2009: VL 172.783; CD4 799, 17%;
10-2009: VL 197.887; CD4 587; 19%.
No meds yet.

Offline viajan0917

  • Member
  • Posts: 10
Re: When to start meds?
« Reply #6 on: March 19, 2010, 12:55:29 AM »
Hi nuc
i understand your worry about the possibility of your CD4s continuing to drop....im not saying you have a reason to worry  but its just natural for us to always think the worst and worry about the "what if's". i had a bad habit of doing the same thing....and I drove myself nuts.

I started meds just 4 months after my diagnosis (7 months after infection) while I had a CD4 count of 676 and VL of 71k.  I know this doesnt fall under the guidelines of when HAART is reccomended but it was my own personal choice to start on meds. I didn't like the feeling of knowing I have this virus in me and not doing anything about it. My doctor who has been specializing in HIV for over 15 years assures me that there is no harm in starting meds early (as long as you adhere) and that current research is starting to steer back towards the idea of  starting meds "the sooner the better" regardless of CD4/VL.
After the first few weeks I had worried myself thinking that I had started too soon, but I've come to terms with my decision and am comfortable with the way things are looking now :)

by no means am i trying to pressure or advise you on what decision to make- im simply just sharing my opinion and experience.
 good luck on your next visit :)

Offline Bruce

  • Member
  • Posts: 16
Re: When to start meds?
« Reply #7 on: March 23, 2010, 10:18:10 AM »
My personal experience leads me to believe that the sooner you start the better. The stronger you are the more chance you have to fight this.

I waited two and a half years after diagnosis for my CD4 to drop from 650 to below 250, the (then) recommended time to start meds. In restrospect, I should have started earlier and would have avoided some nasty bouts of bronchitis in the interim, which only made my counts worse. The only thing that caused me to delay was the fear of the potential side effects of Atripla, which proved to be, in my case, unfounded and the effects absolutely minimal.

So, be brave and go for it. Start the meds. It's not nearly as scary as it is made out to be.

I hope this helps a little? Keep well and look after yourself.

Offline ad2san

  • Member
  • Posts: 184
Re: When to start meds?
« Reply #8 on: March 23, 2010, 02:40:24 PM »
Hi Y'all,

just to avoid generalization:  I started 12 years after I got infected.
Coping with the side effects is not that easy. But the therapy works, that's the good news.
Considering my life in the past year (I started the therapy almost 12 months ago), I do not regret my doc delayed the beginning of the therapy.
I think you should listen to your doc ....

Cheers
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Apr 2011 CD4 523 UD 21%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
October 2012 CD4 684 UD 29%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
May 2013 CD4 385 UD 28%
July 2013 CD4 CD4 636 UD 25%
Oct 2013 CD4 588 UD 39%

Offline veritas

  • Member
  • Posts: 1,408
Re: When to start meds?
« Reply #9 on: March 24, 2010, 10:29:54 AM »

Nuc,

When to start HAART is certainly a personal decision, however, one has to take into consideration not only cd4s but also viral when making one's decision. This pdf is relevant today only the guidelines have been updated:

http://hivmedicine.com/hivmedicine2007.pdf

See page 176 for when to start meds and the possible progression to aids. Age makes a difference also.

v

Offline risred1

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  • Posts: 419
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Re: When to start meds?
« Reply #10 on: March 24, 2010, 04:16:43 PM »
Everyone's experience is always interesting.

I didn't have my diagnosis until after, what was presumed, 1 year of infection.

So I soon went into a period many of us go into where we reach a kind of equilibrium, which is my doctors term, where VL and CD4 are relatively stable... in my case... VL below 50k and a CD4 above 350 pretty consistently.

At the time, my doctor said wait. The idea of waiting was based upon new drugs being available but not well studied. Otherwise, more difficult meds, with more pronounced side effects, like Kaletra, would be the option he would have recommended.

We agreed we would use 350 as our benchmark but would test every 3 months and we would be looking at Viral Load.

Well, when my VL started to jump and my CD4 started to slip... it was time. I waited another 3 months to see if some supplements I've taken would help but to no avail, and I went on Reyataz, Truvada, Norvir, because I wanted morning dosing.

Its hard to say if 350 is the "majic" number or not... What my doctor observed is that we can function pretty normally above 350 that OI's are not as much of a risk. But what shouldn't be overlooked is that HIV has its own side effects too, and in my case, I had pretty bad fatigue in the last year before I started meds.

It is of course a long term decision one has to make. So it really has to do with what you think is in your best interest. Certainly getting on meds now with a High CD4 and a pretty High VL should result in a dramatic restoration of your CD4 and a undetectable VL. That may itself be worth it to you. So I see no real objection if you're view is start treatment now to get these numbers off the table.

But your doctor is 350 oriented for a reason. Ask why, in light of changes to the guidelines... in fact print them out and bring them with you. My doctor is a ID specialist and has been treating HIV infection for many many years. So with that experience will come the recommendation.

But we are also armed with information, and our own needs. It you cannot achieve comfort waiting for your CD4 to fall below 350, then really its your decision. I was comfortable with 350 as my mark... I do wish i went a bit sooner based upon symptoms!

That's my 2 cents.
risred1 - hiv +
02/07 CD4 404 - 27% - VL 15k
10/07 CD4 484 - 31% - VL 45k
05/08 CD4 414 - 26% - VL 70k
01/09 CD4 365 - 23% - VL 65k
05/09 CD4 291 - 23% - VL 115k - Started Meds - Reyataz/Truvada
06/09 CD4 394 - ?% - VL 1200 - Boosted Reyataz with Norvir and Truvada
07/09 CD4 441 - ?% - VL 118 - Boosted Reyataz with Norvir and Truvada
09/09 CD4 375 - ?% - VL Undetectable - Boosted Reyataz with Norvir and Truvada
12/09 CD4 595 - ?% - VL Undetectable - VIT D 34 - Reyataz/Truvada/Norvir

 


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