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Author Topic: Experts debate when to start HIV therapy  (Read 10996 times)

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Offline Dr.Strangelove

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Experts debate when to start HIV therapy
« on: December 16, 2013, 03:50:25 PM »
Here's an article about treatment start, that I found interesting.
Two experts from international guideline committees discuss the matter.
What I find interesting is the fact that, apparently, when you look at the hard data the case for an early treatment start isn't quite as settled as it may seem.

Here's a short snippet:
How do the US guidelines differ from other guidelines worldwide, such as in Europe?

SD: I think this is largely a philosophical issue. It depends on your default perspective. If your default perspective is ‘we should treat until you prove that we should not treat’, then you go with the American guidelines. But if your default perspective is ‘you should not treat until we prove it’s actually better to treat’, then you should wait. There are no definitive, randomized, clinical trial data showing that you should treat people whose CD4 counts are above 350. Everyone agrees that such data is lacking. So what certain guideline panels have done is say that in the absence of definitive therapy, we’re just going to assume that untreated disease is more benign than treated disease. That is philosophically quite distinct from the perspective that the American guidelines have taken, which is the complete opposite.

The full Article: Caroline Sabin and Steven Deeks debate when to start HIV therapy

Offline Jeff G

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Re: Experts debate when to start HIV therapy
« Reply #1 on: December 16, 2013, 04:46:37 PM »
Thank you for posting this . Its a keeper so I made a sticky topic .
HIV 101 - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here
PEP and PrEP

Offline Miss Philicia

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Re: Experts debate when to start HIV therapy
« Reply #2 on: December 16, 2013, 04:56:24 PM »
The key section, for me at least, is the part about it being more of a philosophical question. So in some ways I find this all interesting, and in other ways completely not so -- if that makes any sense.

I also wish, at least on the UK side, that they addressed cost considerations more than in this blurb. I'm sure as doctors they wish to act like that doesn't exist, but I don't see how that is realistic in a setting like NHS -- and I actually don't find that upsetting, it's a reality. Or perhaps I'm completely off-base.

In the end I'm not even sure of my own opinion. I think 350 is too low, but would find a UK standard of 500 practical both clinically and cost-wise. I'm hesitant to endorse the new US position of putting everyone on something straight away, for the same reasons but in reverse, though I err on the side of inflammation damage at some point.

And the other important section for me:

there are epidemiologic data, as well as strong theoretical considerations, that suggest the harm associated with delaying therapy will not emerge until years later, when patients are much older. That is to say, if a decision is made to defer therapy in a person in their 30s and 40s, the consequences of that deferred therapy is not going to be measurable until people are in their 60s and 70s. This leads to the issue of whether or not this question will ever truly be definitively addressed. No-one can afford, and no-one really wants, a study that will play out for decades to prove this conceptual issue.

I honestly believe we are now seeing this play out in real time with Long Term Survivors, and the real toll of pre-HAART treatment and the damage it's doing almost two decades later, combined with the fact that the drugs then had higher toxicity profiles of course.
« Last Edit: December 16, 2013, 05:05:01 PM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline jaywalkor

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Re: Experts debate when to start HIV therapy
« Reply #3 on: April 27, 2014, 11:24:21 AM »
Recently contracted and diagnosed. (2 months)

All my nurse practitioner seems to want to hear is that I am ready to start meds.

In some of my limited research, I have obtained the following beliefs:

  Not everyone with HIV has to take meds.  I personally know a 45 year old who was infected at 17 and has never had to take meds - yet.

  Upon initial infection/symptoms, viral load can spike to millions, so 400,000 VL at initial test with 1 month infection is not 'alarming' discovery.

  My CD4 is over 500, which is good.  I believe this is the area of concern, more than viral load.

  While a new study showed that some who started meds right away and stopped after 7 years appear to have a functional cure, there were others in the study that developed drug resistance after 9 months of meds.  Risk / Reward has to be weighed.

  Somewhere I read that a 'baseline' of viral load should be determined prior to starting meds.  I don't think that is possible unless I wait a few three month intervals to see how my immune system reacts.

When i mentioned this to the practitioner, she dismissed my research.  She also asked that I bring in some of my research to the next appointment.  I feel like she wants to discount it. 

It seems apparent that the meds are working wonders for many, if not most.  Undetectible is a great result and I'm sure those working to prevent the spread of HIV love seeing people get on meds and become undetectible. 

However, I've also read that viral load is not the determining factor in suggesting meds.   CD4 count is.  Not to say that VL is completely discounted and around 400,000 VL is the unofficial standard for cause for concern. 

If my VL is still high after my next blood work, I will seriously consider starting meds immediately.  If my CD4 drops below 500, I will start meds immediately.

I've seen all the post on "Only YOU can decide when to start meds".   I get it, but I'm doing this alone and not against taking meds.  I just want to do it for my health benefit, if needed and not just to get undetectible to protect the world from me.

Am I crazy to wait?  Is my decision based on reasonable public knowledge?
Or is the practitioner right, I should start meds now?   

Offline jaywalkor

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Re: Experts debate when to start HIV therapy
« Reply #4 on: June 26, 2014, 05:44:57 PM »
2nd Labs 6/2014
VL 87,000 down from 400,000 in March
CD4 487 down from 530 in March

Still not sure whether or not to start meds.  Resistant to Viramune.  Couldn't even follow doctor on what she'd prescribe. 

Offline J.R.E.

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Re: Experts debate when to start HIV therapy
« Reply #5 on: November 26, 2014, 10:58:23 AM »
For those that want to delay treatment,  ( I was one), you may want to read this :


Delaying ART in patients with HIV reduces likelihood of restoring CD4 counts
« Last Edit: November 26, 2014, 11:01:28 AM by J.R.E. »
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg






Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 9/16/16,  t-cells are at 501,   Viral load remains <40

Current % is at 12%

 65 years young.

Offline Mightysure

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Re: Experts debate when to start HIV therapy
« Reply #6 on: November 26, 2014, 11:47:12 AM »
My baselines were CD4 1034 and VL 636. My doctor insisted I start treatment and after careful consideration I agreed. I'm almost a week into Stribild and with all the side effects I'm questioning my decision.

Offline buginme2

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Re: Experts debate when to start HIV therapy
« Reply #7 on: November 26, 2014, 02:14:12 PM »
This debate is over.

Who is still debating this?

Don't be fancy, just get dancey

Offline alberche

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Re: Experts debate when to start HIV therapy
« Reply #8 on: December 02, 2014, 06:22:00 PM »
I started meds very early, two and a half months after infection, that was more than 8 years ago. Since then I have always been over the 1.000 CD4s and undetectable. My average CD4 account has been between 1300 and 1600 during all these years.

Why did I started so soon?

I was diagnosed very early. My doc at that time proposed me to start. I was well  informed about med options, pros and cons. I thought that if I was given a lifespan of more than 30 years after starting meds at the 500 or 350 mark, which will be -in the long term- the difference between starting early or waiting, let's say, 5 or 6 years until I got some 500-400 CD4?. Is there actually any difference as per regards of long term medication side effects comparing 25 years to 30 years on meds? Most probably not much. In addition, starting early could help to preserve more of my immune system, both qualitative and quantitative, improving my general health status in the future.

Also I wondered about whether I could cope with the anxiety of being not on meds, knowing my immune system, maybe also my brain and other organs will be progressively deteriorating during some 5 to 7 years.

So I decided to go and start meds back then.

After almost 9 years, I am satisfied with my decision.

The pros, I am in good health, high CD4 and undetectable VL, also in a constant range of figures, no big oscillations. I was also diagnosed with syphilis and could control it rapidly, in less than six months, with the antibiotics, thanks to my high CD4 levels (otherwise it may take years to curb it down). And last, but not least, taking pills since the beginning made me conscious of my condition since the very beginning, which helped me to assume I had to take more care of myself. Also, the fact of being in a reasonable good health condition has made possible for me to keep my job and other activities as usual.

The cons: the burden of treatment, the more frequent medical appointments, the issues for traveling with meds (both holidays and work travels). Some meds' side effects, such as rash and gastrointestinal in the first year, bone density loss since some years ago, lipids and cholesterol always on the edge of high levels, even if eating healthy-low-fat food... nothing too though one could not cope with. Delaying meds start maybe could spare me these issues for some years, that's all.

Nevertheless, in spite of starting meds, I couldn't skip to pass through the same mood, psychological or maybe depression issues I see other people living with HIV is passing through as well. And this is the point on which I feel most vulnerable right now and HIV medication makes no difference about it.

So, starting soon I think is a good decision as per regards of keeping your health as good as possible and to improve your long term quality of life. But it certainly makes no difference about the psychological issues of having HIV. My advise will be, get as much information as you can, be conscious about the effort of taking your pills regularly, adherence is very important for meds to work well and reducing viral resistance issues, and start the sooner as from the moment you feel prepared to take meds.

Hugs :-)
« Last Edit: December 02, 2014, 06:26:38 PM by alberche »
love is blindness...  a wonderful song!

Offline AJinSAC

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Re: Experts debate when to start HIV therapy
« Reply #9 on: December 27, 2014, 01:02:27 PM »
Thank you Dr. Strange Love for the post.  Great thread of comments.  Yes the definitive answerer is still out. My thoughts and story include the longevity of being non (or slow) progressor, along with the public health model of "treatment now" was my decision to start Stribuild last year.   The slogan HIV Stops with Me, hit home.  Since starting treatment and the positive effects of being undetectable had a substantial mental health boost, a relief of being less likely to infect someone else.  For twenty years the burden of feeling infectious chipped away at me.  Safe sex usually practiced but years of acting out in easily accessible SOMA Bars and Clubs the reality was it wasn't always going to happen.  This chipped away at my psychy and no judgment. 

I'm 50 years old and from the generation of wait and see, so starting treatment was not something I wanted to do, or needed to do, as for some reason my body maintained tcells 400-1200 for ~20 years with the virus.  It was scary starting treatment, Strbuild a good six weeks of side effects and the occasional headache now a days.  The relief has been worth it for me, maybe even accepting the fact, dealing and moving forward too. 

The current public health model, HIV meds as a prophylactic and through early treatment and PREP, is hopefully a way to help stop the spread of HIV.  It is still an individuals choice, when to start treatment.  These shared stories may help.

More funding and research is needed to work on even better treatments, cost effective, and global availability.  Public health leaders and advocates need to continue to work on the stigma, mental health and substance abuse issues that are too frequently intertwined.  A pill does not fix all.

Thanks for letting me share.  Have a great new year!  ::)



Offline DodgerDawg

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Re: Experts debate when to start HIV therapy
« Reply #10 on: May 30, 2015, 08:42:22 PM »
It's no longer a debate.

January 2014 CD4 = 5      .03%  VL = 1,800,000
June      2014 CD4 = 206  .15%  VL =            48
January 2015 CD4  = 211  .13%  VL =            71
June      2015 CD4 = 155  .12%  VL =             UD
July       2015 CD4 = 148  .11%  VL =             48

Offline AusShep

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Re: Experts debate when to start HIV therapy
« Reply #11 on: September 30, 2015, 01:05:00 PM »
It's no longer a debate.


Yes.  This shouldn't be a sticky anymore.

The World Health Organization has joined the CDC in recommending immediate treatment for everyone infected and greatly expanded PrEP coverage for those at risk.


30 SEPTEMBER 2015 ¦ GENEVA - Anyone infected with HIV should begin antiretroviral treatment as soon after diagnosis as possible, WHO announced Wednesday. With its "treat-all" recommendation, WHO removes all limitations on eligibility for antiretroviral therapy (ART) among people living with HIV; all populations and age groups are now eligible for treatment.

The expanded use of antiretroviral treatment is supported by recent findings from clinical trials confirming that early use of ART keeps people living with HIV alive, healthier and reduces the risk of transmitting the virus to partners.

WHO now also recommends that people at "substantial" risk of HIV should be offered preventive antiretroviral treatment. This new recommendation builds on 2014 WHO guidance to offer a combination of antiretroviral drugs to prevent HIV acquisition, pre-exposure prophylaxis (PrEP), for men who have sex with men. Following further evidence of the effectiveness and acceptability of PrEP, WHO has now broadened this recommendation to support the offer of PrEP to other population groups at significant HIV risk. PrEP should be seen as an additional prevention choice based on a comprehensive package of services, including HIV testing, counselling and support, and access to condoms and safe injection equipment.

New recommendations on early use of ART and expanded offer of PrEP are contained in WHO’s "Guideline on when to start antiretroviral therapy and on pre-exposure prophylaxis for HIV.” The new guideline stresses that, in order to effectively implement the recommendations, countries will need to ensure that testing and treatment for HIV infection are readily available and that those undergoing treatment are supported to adhere to recommended regimens and are retained in care.

The recommendations were developed as part of a comprehensive update of the "WHO consolidated guidelines on the use of antiretroviral drugs for preventing and treating HIV infection". This early release guideline is shared ahead of the full publication, slated for release later this year, because of their potential for public health impact.

Based on the new recommendations, the number of people eligible for antiretroviral treatment increases from 28 million to all 37 million people who currently live with HIV globally. Expanding access to treatment is at the heart of a new set of targets for 2020 with the aim to end the AIDS epidemic by 2030. These targets include 90% of people living with HIV being aware of their HIV infection, 90% of those receiving antiretroviral treatment, and 90% of people on ART having no detectable virus in their blood.

Offline heretolearn

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Re: Experts debate when to start HIV therapy
« Reply #12 on: February 06, 2016, 01:55:54 AM »
I would have liked to participate in studies to help others because my numbers were so good at diagnoses. I would have also liked to have seen what happened for a year or more and if my body could control the virus pretty well on its own. I didn't get a choice since I am pregnant. I feel better knowing I am less infectious to my husband and child. Also, I had all these knots in my back, that I thought were injuries to my muscles but now I am sure they were swollen lymph nodes, that are a whole lot less painful. I am still aware of them but I am thankful for the relief. They popped up at the same time that the lymph nodes in the back of my head and neck became swollen a little over a year ago and a few weeks before I think seroconversion occurred. My OB said she had never heard of that happening but I mapped the lymph nodes on graphs and that is where they were.
« Last Edit: February 06, 2016, 02:00:44 AM by heretolearn »
12/16/15- Dx&Pregnant
12/21/15- Cd4- 39% 902 Vl- 700
1/4/16- started Complera
1/25/16- Vl- 30
2/22/16- Vl- UD
3/14/16- Cd4- 42% 952 Vl- UD
6/16- cd4- 1218 vl- ud

Offline limbohiv

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Re: Experts debate when to start HIV therapy
« Reply #13 on: May 17, 2016, 01:20:59 PM »
I am one of the patients doctors are delaying treatment, with.  Almost 2 years after diagnosis, it is still hard to swallow, comprehend.
But the emotional and mental tolls it has taken are obvious. In fact it was constantly asking for a hormonal test that I got the HIV test shoved in my face, I agreed to it in order to rule it out. As I explained I was on the .000000000000000000000001% of being exposed.
Unfortunately the only thing I've been able to hypothesis with all the data I have available: medical, symptoms that led us to the diagnosis started with a vasectomy in July 2013, diagnosis was Aug 2014.
my CD4 & VL's as follows. My husband who had higher deterioration was suggested to start meds asap. In 2016 Im still being asked to hold off.

Aug 2014
CD4: 921  VL:225

FEB 2015
CD4:837 VL:818

MAY 2015
CD4:905  VL: 341

SEPT 2015
CD4:906 VL:930

Stress seems to greatly effect my levels, In June 2015 I was assaulted by an officer, and then a car accident in July, inconstant fear since because screaming  "why are you hitting him" is changed to assaulting an officer when they find out your are positive. I'm fearful to get tested again but anxious to know the results. And still awaiting trial.

Offline heretolearn

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Re: Experts debate when to start HIV therapy
« Reply #14 on: May 17, 2016, 04:11:51 PM »
*edit* I should read the entire thread before commenting.
« Last Edit: May 17, 2016, 04:20:52 PM by heretolearn »
12/16/15- Dx&Pregnant
12/21/15- Cd4- 39% 902 Vl- 700
1/4/16- started Complera
1/25/16- Vl- 30
2/22/16- Vl- UD
3/14/16- Cd4- 42% 952 Vl- UD
6/16- cd4- 1218 vl- ud


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