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Main Forums => I Just Tested Poz => Topic started by: r2j on February 17, 2007, 10:09:28 am

Title: Pros and Cons of Starting Treatment Early
Post by: r2j on February 17, 2007, 10:09:28 am
Hi everyone! I'm newly infected/diagnosed and wanted to get some bulleted advice on the pros and cons of starting treatment early.

Here's my facts:
-28yo male
-Infected somewhere between November-December
-Seroconversion illness in January lingering into beginning of February
-Diagnosed end of January - initial VL 350000 CD4 715
-VL has since come down to 40000

I have heard strong recommendations to start and to delay treatment. My most recent recommendation from a Doctor was that at this point its purely philisophical whether or not to start treatment since I may have missed the window to start during the acute phase.

I'd love help in sorting through the pros and cons this weekend. I'm making my decision relatively soon as to not miss any windows of opportunity. I'd love help from anyone but specifically would love to hear from someone who was very healthy and started treatment early.. and why they chose to do so.

Thanks!!
Title: Pros and Cons of Starting Treatment Early
Post by: r2j on February 17, 2007, 10:10:16 am
Hi everyone! I'm newly infected/diagnosed and wanted to get some bulleted advice on the pros and cons of starting treatment early.

Here's my facts:
-28yo male
-Infected somewhere between November-December
-Seroconversion illness in January lingering into beginning of February
-Diagnosed end of January - initial VL 350000 CD4 715
-VL has since come down to 40000

I have heard strong recommendations to start and to delay treatment. My most recent recommendation from a Doctor was that at this point its purely philisophical whether or not to start treatment since I may have missed the window to start during the acute phase.

I'd love help in sorting through the pros and cons this weekend. I'm making my decision relatively soon as to not miss any windows of opportunity. I'd love help from anyone but specifically would love to hear from someone who was very healthy and started treatment early.. and why they chose to do so.

Thanks!!
Title: Re: Pros and Cons of Starting Treatment Early
Post by: blondbeauty on February 17, 2007, 10:21:45 am
Read alberche´s `posts (two posts) in this thread below.
http://forums.poz.com/index.php?topic=7794.0
Title: Re: Pros and Cons of Starting Treatment Early
Post by: RapidRod on February 17, 2007, 12:34:52 pm
Man you have a long ways to go before you need to start taking meds. You need to wait till you've have a few blood draws to see where your VL is going to level off at. You may not need meds for several years.
Title: Re: Pros and Cons of Starting Treatment Early
Post by: Ann on February 17, 2007, 01:21:00 pm
Hi rj, and welcome to the forum.

I've merged the two identical threads you started in two different forums. We'd rather you didn't start identical threads like this. Check out the welcome threads that are found at the top of some of the forums so you can know our posting guidelines. Thanks. ;)

I agree with Rodney - you could go for years without meds. There are an awful lot of considerations to starting meds, like eventual resistance, side-effects and long-term side-effects.

They have yet to conclusively prove that starting so early has any real benefits. We do know there are long-term side effects with some drugs, but other drugs are too new and the data isn't in yet. These drugs are toxic and not something to be taken lightly.

Have a look at some of the other threads both in this forum and some of the others. There are a lot of discussions about starting early vs starting when your numbers suggest you should.

Ann
Title: Re: Pros and Cons of Starting Treatment Early
Post by: dtwpuck on February 17, 2007, 02:01:25 pm
R2J  -  I started very early, within three months of seroconversion (we think).

Over the last ten years my numbers have been consistently very good. 

HOWEVER, and this is a big caution, I would recommend you read up on this issue and solicit advice from many people.  It is YOUR DECISION, YOUR LIFE.  You have to do what you feel is best. 

I wish I had someone to talk me out of taking meds early.  I was hell bent on doing so, terrified and afraid, and I HAD TO DO SOMETHING.  My personality does not permit me to find it easy to sit idly, being patient, hoping that things will be OK.  If I know about a problem, I tend to want to solve it.   That's not always so good.

I have had to change meds several times until i landed on my current combo five years ago.  (six almost)
The side effects were horrible:

AZT:  projectile public vomiting.  severe anemia.
D4T:  peripheral neuropathy
Crix:  kidney stones (oo baby), lipodystrophy
Sustiva:  severe anxiety, depression and insomnia.  believe it or not, that was the worst one for me.
Viramune:  severe acid reflux, which I can control with other drugs.

Also included have been elevated cholesterol levels, which may or may not be related, and almost hypoglycemia, which my doc is convinced is caused by Abacavir.  However, I don't know of anything which proves him right except his own experience.

At any rate, meds can and do save people's lives.  They are not to be taken lightly.  And, please do not start them just because you might have similar personality characteristics as I do.  Step back and listen to all the points of view and keep an open mind.

Cheers.  And, I wish you the very best,

~puck
Title: Re: Pros and Cons of Starting Treatment Early
Post by: lifechanging2007 on February 17, 2007, 02:11:14 pm
Hi r2j and welcome to the forum,

Like yourself I am a newly diagnosed 26 yo and I am in the same confusion about when to start meds, and after talking to my doctor, I have to agree with Ann for several reasons :

-Before there was no advanced tests like viral load and CD4 levels so people would find themselves with OI(opportunistic infections) so now monitoring your health is an option
-If you're still in the seroconversion phase, I would have encouraged you to start meds because they say that during this phase the virus causes the most of damage but i Guess you missed that phase so....
-the theory of "hit hard hit early" is like they say a theory and there is much questioning about it.
-you have to be READY for the meds because adherence is the MOST important issue in taking them, missing one dose each week could lead to lots of trouble.
-the meds can have short and long term side effects, we're forgetting also the resistance and the fact of taking meds EVERYDAY for the rest of your life.

So I decided to wait a little bit to check with my numbers few month later and given that your CD4 is average+ I think you should wait a little bit.

Since you are newly diagnosed like me, I understand the pain and frustration you are facing so hang in there and be strong because now its too late you have the "VIRUS" try to think what is best for you now even though all im doing lately is watching dvds all day long but im hanging in there and I will fight this "disease of the century" because i love life too much to die while im still breathing.

Good luck and be strong.
lifechanging2007@hotmail.com
Title: Re: Pros and Cons of Starting Treatment Early
Post by: AustinWesley on February 17, 2007, 10:28:29 pm
Hey RJ,

What is your current CD4 count and CD%?   

The 715 was great, but as the others said it might be worth waiting for several labs.   I'm now going on a year without meds, but so far my numbers have slowly declined although I'm not at all sick or anything.

There are very convincing arguements for delaying and starting treatment early.   I've spent the last year asking this question and haven't found anything conclusive either way, but have now decided that if my labs have dropped further I will be starting meds soon.

Some of the more recent articles seem to lean towards earlier treatment, but it's really gona come down to your choice.   You can see my numbers below for comparison if that helps you at all.   

Your numbers are better than mine  : )   High CD4 is good, but probably with more info. you will get some other opinions and there are some excellent folks here to share their stories.

I'd wait to see what happens over the next couple months.  How often are you having labs done right now?

Holler at me if I can be of any help.   

Wesley
Title: Re: Pros and Cons of Starting Treatment Early
Post by: J.R.E. on February 18, 2007, 08:55:01 am
Hello rj,

The following link ( from the lessons on this site), may help to give you a better understanding of things.

http://www.aidsmeds.com/articles/WhenToStart_7512.shtml


 Your numbers are good, and it could be quite a while before you start treatment.

Ask questions if there are things you don't understand from the link I just gave you, But take your time reading it.


Take care-Ray
Title: Re: Pros and Cons of Starting Treatment Early
Post by: r2j on February 23, 2007, 08:43:17 am
Hey everyone. Thanks for all the advice. I've been doing a lot of thinking about this obviously over the past week. I haven't made a decision yet but I think that the fact that I haven't decided means I'm not starting... but I'm still not 100% sure. I feel like I'm out of the acute/primary stages of infection where the most benefit is said to occur when starting treatment. I also don't know if I'm prepared to deal with the side effects when its not 100% certain to be worth it.

Since my diagnosis, I've made a lot of other changes in my life which have made me happy and continue to help me keep a positive outlook. I'm relying on those changes to make it "feel" as if I'm doing something to treat the disease.

Thanks for your help! I really enjoy reading all the forums and hope to post more :)

Title: Re: Pros and Cons of Starting Treatment Early
Post by: Central79 on February 23, 2007, 09:21:40 am
Hey R2J

I was in the same position as you when I was diagnosed - pretty much in the acute phase. I made the decision not to start treatment based on my initial numbers: CD4 840 (22%) and VL >500,000. Although I was feeling pretty shitty, I knew my VL would drop and I would start feeling better.

Like you said, nobody knows if it's beneficial to start in acute infection. My decision was motivated by the fact I had a good T4 count, like you, and didn't want to start meds maybe 10 years earlier than I'd need to. Nor did I want to take a short course to get my VL down and then stop, opening myself up to resistance issues.

Like you, I wanted to do something - ANYTHING. I hated/hate sitting and waiting. When I was diagnosed, part of me was wishing it was leukaemia (which would have also given me big lymph nodes) just so I could DO something and go through the chemo and be cured, even though my survival may have been worse.

I've calmed down a bit now. Appreciated that I'm in it for the long-haul. My T-cells are still robust a year later and my VL continues to drop - I'm waiting to see where it levels off. I'm trying to get on with my life as best I can, and these forums help with that. Hope you post more.

Take care,

Matt.
Title: Re: Pros and Cons of Starting Treatment Early
Post by: bimazek on February 23, 2007, 05:46:33 pm

for me the numbers will be, and i am not there yet
to start

cd4 under 350

vl over 120,000

% below 14%

and i would get three blood tests before starting on meds
do not trust one test, you might have had a bad day
numbers will jump around



Title: Re: Pros and Cons of Starting Treatment Early
Post by: megasept on February 27, 2007, 12:54:52 am
Man you have a long ways to go before you need to start taking meds. You need to wait till you've have a few blood draws to see where your VL is going to level off at. You may not need meds for several years.

I agree with Rod.

 8)  -megasept

Title: Re: Pros and Cons of Starting Treatment Early
Post by: sdcabincrew74 on March 05, 2007, 09:45:12 am
You have a long way to go hon just like everyone said.  But if I could do it over I would start around 350-400 ..... for my cd4 that is.  Preservation of your current immune system is important IMHO