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Author Topic: Hi Guys. Little bit low..Can I ask for some START study advice please  (Read 1161 times)

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Offline Rusty146

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Hi Guys

I was diagnosed with HIV type 1 in August 2011. When my results came back, they told me that I was in the process of zero converting so it was caught at the very beginning. It was a big shock because I was always careful and I'm still a little in denial. It's hard because nothing appears to be physically wrong. I'm not in bad shape, but I've started to eat more healthily and I'm exercising more, which is is a good starting point.
My doctor has approached me about the START study - to begin medication immediately as opposed to waiting until CD4 count drops below 350cells/mm3. I've read about the study and the evidence so far suggests that this is beneficial.

Does anyone have any personal experiences to share? I don't have all my results to hand, but when I was first diagnosed, my viral load was high - approx 1 million. From memory my latest blood stats are:

Sept 2011:
Viral load - 5,466
CD4 absolute - 593
CD4 % - 36%

November 2011:
Viral load - 1000
CD4 absolute - 728
CD4 % - healthy

Latest January 2012:
Viral load - 299
CD4 absolute - 526
CD4 % - healthy
 
I'm told I'm doing well, but it's still very early on. I really don't know what to think.

Any advice would be really appreciated,
Thanks a lot
« Last Edit: February 19, 2012, 06:46:48 AM by Rusty146 »

Online mecch

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #1 on: February 19, 2012, 07:40:58 AM »
Hello
Welcome to the forum.
What exactly is this "START study" you are referring too, please?

I was identified in seroconversion, before I was HIV+ infact. That came a week or two later. 

You are not seroconverting anymore.  So if you start HAART you will not be starting "in seroconversion" technical point, not sure that is important to you.

Your body has done a fine job fighting the HIV down to a low viral level. 

You don't "need to start" so what you are considering is the advantages and disadvantages of starting HAART early after seroconversion where otherwise the body is doing OK on its own.

I started HAART 3 or 4 months after serocoversion.  I was in the reverse situation as you.  My numbers kept going up up up up and the doctor pretty much told me it was time to start. 

Despite the different circumstances, I can tell you a few things that could apply to your own situation, but I guess you can figure them out in any discussion of early treatment. 

1) HIV goes under control of the drugs.  You immediately stop thinking about, researching or planning any sort of lifestyle changes, diet, supplements, "spiritual work" whatever - that you have adopted or plan to adopt - "to fight the virus" and stay healthy.  This is great.  In effect - life goes on as normal because, actually, nothing you can do really fights the virus its just your genetic immune system.  I mean I'm sure healthy living and exercise and yada yada is great for anyones life, including an HIV+ person, but it wasn't going to be the route to a successful immune response to HIV.  That's what the drugs are for. 

2) The day you start HAART, the next morning you will feel relieved.  This will probably be just emotional, but enjoy it!  (I felt immensely relieved physically too because I had viral loads in the millions and HAART starts cutting that down exponentially in the early days of therapy - so I physically felt that! better each couple of days.)  After your first lab shows that the HAART is working, then you really know, its business as usual - but for two new things in your life 1 - you are HIV positive and 2 you are taking medicine that controls it.

3) there are some advantages to be had in your sex life that you are undetectable.

4) if other people are aware of your seroconversion, they also get to share in the relief of knowing the HIV is now controlled.

Well those are some of the advantages to early treatment, and apply even if your body doesn't need the treatment yet.

Plus there may be benefits to your body and organs, for example your gut, to early treatment, but that is for the technical people to discuss, and the doctors to know about.
« Last Edit: February 19, 2012, 07:43:45 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline spacebarsux

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #2 on: February 19, 2012, 09:03:41 AM »
Hi Rusty,

Welcome to the forums.  :)

Here's how I feel for your situation in a nutshell: Do not get on the START study to start meds if you feel you are still in denial about your diagnosis and unsure about it all.

Why?

Because so far your body has got a great handle on the virus. Your CD4 is well within normal and your VL is quite low so why start popping pills when you don't know for sure if there's going to be a net-benefit for you ?

You literally could be YEARS away from starting meds and that means you get more time to digest all the new information and on coming to grips with your new reality.

I understand your situation really well. When I was diagnosed a year ago I wanted to enrol for the START study (as someone who doesn't take meds) but couldn't as there are no trials happening in my city.

I've been poz since 2005 (although diagnosed in 2011) and you can see my labs in my signature line. I'm pretty sure if I was forced to start meds when I was in state of denial about my diagnosis (first 4 months or so) I would have flushed my pills down the toilet to spite myself (but I'm sure you're not as weird as me  :)).

I've gotten over the hysteria and trauma of my diagnosis now thankfully, however, I still don't really feel like I want to start meds from which there's no going back- and more so since, current data does not show any long term benefits of commencing therapy with CD4>350.

The moderator of the forums (Ann) has been poz and treatment naive over a decade (if I can be cheeky and speak on her behalf). Her CD4s are still above 350-400. So imagine if she'd started popping pills 10 years ago, she'd basically have been taking pills for a decade and it's well possible that it would not even have been beneficial (There is no way of knowing for sure if it would be based on current scientific evidence). Conversely, she might have added strain on her liver and kidneys when it may not have been needed.

If I were you I'd monitor my labs every 4 months, take my own sweet time to come to terms with my new reality and then take a call when I am better informed and better prepared.

Just my thoughts.

Best.

Edited typos
« Last Edit: February 19, 2012, 01:36:57 PM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline mikeyb39

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #3 on: February 19, 2012, 09:17:23 AM »
I think the START program is basically clinical trials also referred to as (strategic timing of ART)

personally if you have insurance i wouldn't start out with clinical trials, this is just a personal opinions, there are quite a few drugs that are  new and work very well.  Again i don't think you need to start anything yet at this point. 

Give your body some time to adjust to the virus and see how it goes.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline buginme2

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #4 on: February 19, 2012, 09:18:49 AM »
The START study is a clinical trial to see if early treatment is beneficial.  Whether or not you wind up in the early treatment group or if you end up in the delayed treatment group is randomized (meaning a computer will pick for you).  Therefore, YOU need to be comfortable with either option as you will not be able to choose which group you are in.   If you are comfortable with the randomization of a clinical trial, I say go for it.  We wouldnt be where we are today if it werent for people previously participating in trials.
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

Offline weasel

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #5 on: February 19, 2012, 11:09:05 AM »


  Hi Rusty !

                It is up to you .

      I went for    EIGHTEEN YEARS    before I became full blown AIDS !

      I felt great , worked as a cabinet builder , built houses , had a full beautiful

     life with my husband of 33 years now . 

     When I started  HARRT   in 2004 my life went to CRAP ! 

     I no longer felt good .  If i could go off meds I would in a second !

     I hope you think it through . Only you can know for sure .

     The benefits of never going  AIDS   surely would be a good thing !

                                             Be well ,
                                                              Weasel  :-*
" Live and let Live "

Online mecch

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #6 on: February 19, 2012, 11:11:18 AM »
I've been poz since 2005 (although diagnosed in 2011) and you can see my labs in my signature line.

You don't have the same experience as the OP, at all. You were diagnosed 6 years after your infection. You were therefore not a candidate for early treatment and the benefits it may or may not offer. 
Doctors who suggest early treatment at seroconversion and/or within a few months should be able to explain the rationale.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline spacebarsux

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #7 on: February 19, 2012, 01:07:03 PM »
You don't have the same experience as the OP, at all. You were diagnosed 6 years after your infection. You were therefore not a candidate for early treatment and the benefits it may or may not offer. 
Doctors who suggest early treatment at seroconversion and/or within a few months should be able to explain the rationale.

Rubbish. People who are treatment naive with CD4 counts that are stable and consistently above 500 are eligible. Eligibilty is contingent on consistently CD4>500 (with no meds) and not on time of infection.

The hospitals that are participating in the START clinical trials in India are in Chennai and Pune (Southern India). They told me they would have really liked me to partake in the trials but it would be logistically difficult since I live in Northern India. 

More info:

Criteria
INCLUSION CRITERIA:

•Signed informed consent
•HIV infection documented by a plasma HIV RNA viral load, rapid HIV test or any licensed* ELISA test; and confirmed by another test using a different method including but not limited to a rapid HIV test, Western Blot, HIV culture, HIV antigen, or HIV pro-viral DNA at any time prior to study entry.
•Age greater than or equal to 18 years
•Karnofsky performance score greater than or equal to 80 (an indication that the participant can perform normal activities)
•Perceived life expectancy of at least 6 months
•For women of child-bearing potential, willingness to use contraceptives as described in the product information of the ART drugs they are prescribed
•Two CD4+ cell counts greater than 500 cells/mm(3) at least 2 weeks apart within 60 days before randomization

◦The term licensed refers to an FDA-approved kit or, for sites located in countries other than the United States, a kit that has been certified or licensed by an oversight body within that country. Confirmation of the initial test result must use a test method that is different than the one used for the initial assessment.

EXCLUSION CRITERIA:

•Any previous use of ART or IL-2
•Diagnosis of any clinical AIDS event before randomization (including esophageal candidiasis and chronic Herpes simplex infection)
•Presence of HIV progression such as oral thrush, unexplained weight loss, or unexplained fever
•Cardiovascular event (myocardial infarction, angioplasty, coronary-artery bypass grafting, stroke) within 6 months before randomization
•Non-AIDS-defining cancer, excluding basal and squamous cell skin cancer, within 6 months before randomization
•Dialysis within 6 months before randomization
•Diagnosis of decompensated liver disease before randomization
•Current imprisonment, or compulsory detention (involuntary incarceration) for treatment of a psychiatric or physical illness
•Current pregnancy or breastfeeding (a negative serum or urine pregnancy test is required within 14 days before randomization for women of child-bearing potential)


LINK: http://clinicaltrials.gov/ct2/show/NCT00867048

To the OP: I just wanted you to know that if you decide to participate in these trials you should realise that, at this point, there is a possibility that you'd be consuming pills and deriving no benefit. However, it is well possible (some experts think very likely) that hammering the virus to the ground early on could save people from problems somewhere down the road--> (but this is grounded in expert opinion and not evidence) ---> the START results will be the evidence.

Me personally, my brain processes this time as a sort of 'grace period' to get my head around things and also I don't feel like I want to put up with the potentially bad side-effects when it's not really necessary---> Current Treatment Guidelines, the world over, lend credence to this view.

Best.
« Last Edit: February 19, 2012, 02:20:59 PM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Online mecch

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #8 on: February 19, 2012, 01:40:00 PM »
Spacebar, I don't have a quibble about your advice to the OP - the OP can certainly take his time to decide whether he wants to treat or not.

UNLESS, he decides there may be advantages to starting during the first months of infection.  That is a window.  You take, or you don't.

I also don't know anything about this particular START study.  Perhaps you are eligible for a study called "START" but that does not mean that you would start treatment at seroconversion, or soon after e.g. - "early treatment" as I understand it.

If the question is - should I start treatment at seroconversion, or within a very short time afterwards, or wait.  Monitor my CD4 for years perhaps. 

Spacebar, there are doctors who believe their may be advantages to starting that early.   

That is a different ball game to starting before the CD4 recommendations are reached.   You may now consider, like many others, after many years infection, whether to wait until a CD4 threshold is passed, or starting before a CD4 says its needed.   

Some considerations that will be the same. Yes

But not all.

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline spacebarsux

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #9 on: February 19, 2012, 01:50:59 PM »
Yeah, I know many doctors believe in starting meds very early on. Some even believe in starting treatment during seroconversion illness (if one is lucky to be diagnosed at that point). And yes, there are very good reasons for their views such as minimizing inflammation that results from chronic immune activation etc.

However, there are also many doctors who suggest waiting and they too have good reasons which I alluded to above.

The START clinical trials are global cohort study trials that should finally prove which camp is right. 'Hit hard, hit early' or 'Wait and See'.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Online mecch

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #10 on: February 19, 2012, 02:49:23 PM »
If someone is infected 5 years, and has good CD4, and doesn't "need" HAART, and starts HAART.  The data from this person will not say anything about HAART at seroconversion or immediately afterwards.
It's two different groups.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline spacebarsux

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #11 on: February 19, 2012, 02:58:30 PM »
If someone is infected 5 years, and has good CD4, and doesn't "need" HAART, and starts HAART.  The data from this person will not say anything about HAART at seroconversion or immediately afterwards.
It's two different groups.

Yes, I get that. But that is not precisely the point of the START clinical trials which are more about whether there is a net-benefit of being on therapy with CD4>500 or not. And that's what the OP is talking about, as am I.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline osric

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #12 on: February 20, 2012, 11:37:47 AM »
My doc wanted to start me on meds right away despite a vl of only 1400 and cd4s at 1000. But I have enough other crap going on in my life that I didn't want even possible side effects to add to my med regime for other illnesses. Then I was asked to participate in the START study but I declined for the same reasons (and I didn't want to feel like a guinea pig, which is how I felt when I did other studies in the past).

There's a lot of controversy right now over when to start tenement.

I got a second opinion from another ID doc at a different hospital and he didn't think I needed to go on meds until my cd4s fell below 350.

Strangely, the two friends I have who are also positive thought I should go on meds right away and have been extremely concerned and not at all supportive of my decision not to.

Anyway, it falls to each of us to look at our own situation and make the decision that we're most omfrable with. I'll only start meds when I have to.

Offline buginme2

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Re: Hi Guys. Little bit low..Can I ask for some START study advice please
« Reply #13 on: February 20, 2012, 11:53:13 AM »

There's a lot of controversy right now over when to start tenement.


I'll only start meds when I have to.

Um, that is what this study is trying to find out. 
"All I need are some tasty waves, a cool buzz, and I'm fine."

http://www.youtube.com/watch?v=6e0gcEC1TWE

 


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