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Author Topic: Starting early medication (3 months of infection)  (Read 15106 times)

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Offline petros0035

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Starting early medication (3 months of infection)
« on: June 17, 2013, 07:38:38 am »
Greetings to all
First of all to make an intro of myself, my name's Petros, i'm 32 years old and i live in Greece
I would like your opinion on something if possible please cause its quite urgent...
I was diagnosed with HIV beginning of this April 2013 (and infected sometime in March or late February)
I do not know the english term about this but i am at the 'first-infection' phase (which doctors told me can last up to 6 months)
i'm sure you understand what i'm talking about.
Problem is now that doctor wants me to start medication asap (again i do not know the term) and not wait (3-4 years) until my CD4
reach 350-380 and start it then.
I really need your opinions on this...i do not know what to do...i would like to avoid medication if it will make no difference (everything is a possibility i've come to figure). According to my thoughts:

starting medication at this phase:
-Gives better control over the HIV infection (but does not guarrantee anything)
-Might have a possibility to take a break from medication in the future (doctor said that)

start medication on right time:
-Gives me more hope of more 'friendly' medication beeing developed in the near future (heard about the 2014 pills that they are expecting)
-Will give time so i can get the benefits (extra money from goverment) so in case i loose my job from the medication side effects, i'll have
some income till i find a new one
-Seems to me that the HIV virus after a while starts resisting the medication and the solution is to switch to non-resistant medication over and over? if that's the case it would give me more 'time'
-I am not psychologicaly ready (it has been a hell of 3 months since i was diagnosed) and only want start medication now if it will  be better for me and my health (although i understand that there's no guarrantee i'll be better if i start or if i dont)
-Gives me more 'protection' against long term unknown effects of newer meds


Please give me your opinions...
I have to give him an answer if i'm gonna start meds this week

Petros

PS)
Also read
http://www.thewellproject.org/en_US/Treatment_and_Trials/First_Things_First/Considering_Treatment.jsp

Offline Jeff G

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Re: Starting early medication (3 months of infection)
« Reply #1 on: June 17, 2013, 08:48:44 am »
I am not psychologically ready ... that statement by you trumps all other pros and cons to my way of thinking . Your obviously done your homework and thats a sign that you will do well living with HIV , knowledge is power .

When it comes down to it if you are not ready for the commitment of daily meds then there is no use pushing you to do so if its not an emergency or medically imperative to do so right now .

You could look at this as an opportunity , since most HIV positive people require meds at some point you are going to have get to place where you can except it and the commitment it takes to successful . You have only known your HIV status a few months so who can blame you for needing more time . 

Welcome to the forums , glad you found us  ;) .       
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Offline petros0035

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Re: Starting early medication (3 months of infection)
« Reply #2 on: June 17, 2013, 11:12:11 am »
Thank you for your reply...
It is not a problem of commitment (or adherence as i came to figure out that its called).
Do i have any long term benefits (based on facts and not statistics or probabilities) by starting early medication at this point?
For example do i get to live longer if i start now in contrast to starting when my cd4 reach about 350?
Do i have less 'exposure risk' to opportunistic diseases and hiv virus complications if i start now?
Do i have a better success to a possible future treatment if i start now and gain better control over the virus?
If not and the only benefit is that i might be in the 15% percent of the population that will stop meds later on and still be able to control the virus with just their immune system...i'd rather not take that risk and enjoy whatever i have left of a normal life, get social benefits, put some money on the side...cause i am very worried that i will loose my job due to the sideffects of the medication :(

These are the type of questions in my mind...the last thing i am worrying about is having to take a pill every day...

Offline petros0035

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Re: Starting early medication (3 months of infection)
« Reply #3 on: June 17, 2013, 11:18:50 am »
By the way
I was diagnosed with HIV at 3rd of april 2013 and the doctor assumes that i got infected somewhere late February to early March
(Had 2 negative saliva results....1 positive from blood...1 negative western blot and then positive on double check :( )

So i read a quite recent paper that people who start meds early (within 3 months of infection) might at some point be able to stop medication and fight off the hiv virus with their immune system for several years after. But that was just a 15% chance...

So if thats the only benefit from starting early i rather not...
So..is it? what are the pros and cons?

and in bottom line...do i get to live longer or have a more normal life if i start now?

Doctor says that if i wait 15-20 days more then it will be of no use staring early and i will start when i am expected to...

Offline mecch

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Re: Starting early medication (3 months of infection)
« Reply #4 on: June 17, 2013, 12:12:20 pm »

start medication on right time:
-Gives me more hope of more 'friendly' medication beeing developed in the near future (heard about the 2014 pills that they are expecting)



The HAART is good now, today.  No need to wait, all other considerations aside.

-Will give time so i can get the benefits (extra money from goverment) so in case i loose my job from the medication side effects, i'll have  some income till i find a new one


Yes on the one hand, you are being very logical and its  good idea to line up your resoures for the long run.  On the other hand, this isn't necessarily the most strategic and constructive mindset for living well with HIV.  None of us really know what obstacles might present in our own jobs and finances, but we have to do whats right today, anyway.

-Seems to me that the HIV virus after a while starts resisting the medication and the solution is to switch to non-resistant medication over and over? if that's the case it would give me more 'time'

No, you are being pessimistic. Also, inevitable resistance is not the general experience.  You may be misinformed or not yet 100% there on trusting the effectiveness of today's treatment and the many options available to keep people undetectable.


-I am not psychologicaly ready (it has been a hell of 3 months since i was diagnosed) and only want start medication now if it will  be better for me and my health (although i understand that there's no guarrantee i'll be better if i start or if i dont)

A good reason not to rush into medicine, today, in my opinion.  But maybe start concrete ways of changing your mind-set so when it's time, you are ready.


Welcome to the forums!   
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Jmarksto

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Re: Starting early medication (3 months of infection)
« Reply #5 on: June 17, 2013, 01:03:31 pm »
Petros;  Welcome to the forums -- your are certainly giving this considerable thought and asking the right questions. 

I agree with the responses you have received so far.  My read on some of your concerns, such as the medications developing resistance, and loosing your job due to the side effects really speaks to your comment about not being psychologically ready.   As Mecch pointed out - the meds today are good and these (except for the psychologically ready part) should not be issues.

The only benefit to treatment that has not been mentioned in the discussion so far is the reduced risk of transmission.  For me, the reduced risk of transmission was the primary consideration for me to start meds early. 

Starting meds is a such a personal choice and the most important part is that you are making an active and informed decision.

Again, welcome to the forums and I wish you well,

JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45% VL 25
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07/09/14 CD4 1004/39% VL UD
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03/13/15 CD4   833/36% VL UD
04/??/15 Truvada & Tivicay
06/01/15 CD4 1100/50% VL UD
10/16/15 CD4   826/43% VL UD
??/??/2017 Descov & Tivicay
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Offline petros0035

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Re: Starting early medication (3 months of infection)
« Reply #6 on: June 17, 2013, 03:40:42 pm »
Thanks again for your replies
Still can't make up my mind :( and i have to give an answer to my doctor in about 12 hours if i am gonna start or not.

Still my main question remains unclear though...in bottom line...do i get to live longer if i start now? (assuming that i follow all of the doctor's guidelines)

As for reducing the risk of transmission sorry i know its harsh but this is the last thing that worries me at the moment. I am not the type of guy that does unprotected sex...did not even do unprotected sex when i got infected. But thats another story...for another thread :)

Anyway to get back to my main question...
assuming that i had the exact same lifestyle off medications....and the exact same lifestyle starting medication now...in which 'lifestyle' would i get to live longer? or have a more normal life

thanks again for ur replies and welcome,
will get to know you more as soon as i get things straight thats a promise :)

Offline mitch777

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Re: Starting early medication (3 months of infection)
« Reply #7 on: June 17, 2013, 04:22:32 pm »
Welcome Petros!

I think your question about waiting or not waiting for treatment is being debated by the medical community.
Some think it is wise to start early.
Honestly, I have not personally dug into this issue as I have been hiv+ for over 30 years and plan on being around for many more years to come. ;)

Once you are on meds, whether it be now or a bit down the road, you still are likely to live a full life. Just beware of the bus when crossing the street. :)

Wish I had a better answer but I did want to reassure you that today's meds work well and you will be around for a long time to come. :)

m.
33 years hiv+ with a curtsy.

Offline buginme2

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Re: Starting early medication (3 months of infection)
« Reply #8 on: June 17, 2013, 05:04:47 pm »


Still my main question remains unclear though...in bottom line...do i get to live longer if i start now? (assuming that i follow all of the doctor's guidelines)



You realize no one can answer those questions right? 

In the United States, the consensus is its better to stat earlier than later.  Here currently, they treat everyone right away.  It didn't used to be like this.  They used to wait.  After many years and many different variables taken into consideration the recommendation is to start.

Whether or not that translates into "will you individually live longer" is anyone's guess. 

Bottom Line:  Adherence to your HIV medication is THE #1 thing YOU can do to remain healthy.  If you start meds now, be prepared to take them every single day for the foreseeable future.  If you remain adherent you remain healthy. 

If you start now and cant commit to taking your meds you can and may very well end up hurting yourself. 


Edited to add: my 2 cents, I would start As soon as I could get my hands on those little pills.  After all the research and studying I have done over the years, I wouldn't even hesitate.  But that's me, not you.
   
Don't be fancy, just get dancey

Offline petros0035

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Re: Starting early medication (3 months of infection)
« Reply #9 on: June 17, 2013, 06:09:59 pm »
Well cant figure what to do...guess i'll ask for another doctor's appointment
and if that doesn't work i'll flip a coin :p never failed me :p haha

I'm more inclined to not starting though....i cant read anywhere about any certain (based on facts) medical results from starting now or from delaying them. Since both methods are experimental...my logic would say to take the most tested method. Which (in my opinion) would be not starting, since i can read about long term survivors that have not started medication early and are still doing fine.

Also thanks mitch777 was really encouraging reading that you are 30+ years positive...gave me alot of hope


Offline Jeff G

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Re: Starting early medication (3 months of infection)
« Reply #10 on: June 17, 2013, 07:41:28 pm »
Which (in my opinion) would be not starting, since i can read about long term survivors that have not started medication early and are still doing fine.

Also thanks mitch777 was really encouraging reading that you are 30+ years positive...gave me alot of hope



The truth is that I and many other LTS have some significant health problems because of not getting into treatment sooner , mostly because there were no treatments but it adds up to the same  . You have time to make an informed decision but make no mistake untreated HIV can cause damage even if you feel fine .

You say you would want to start meds at 350 ish but I didn't read what your numbers are right now ?   
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You can read more about Transmission and Risks here:
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Offline mitch777

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Re: Starting early medication (3 months of infection)
« Reply #11 on: June 17, 2013, 07:59:07 pm »
Well cant figure what to do...guess i'll ask for another doctor's appointment
and if that doesn't work i'll flip a coin :p never failed me :p haha

I'm more inclined to not starting though....i cant read anywhere about any certain (based on facts) medical results from starting now or from delaying them. Since both methods are experimental...my logic would say to take the most tested method. Which (in my opinion) would be not starting, since i can read about long term survivors that have not started medication early and are still doing fine.

Also thanks mitch777 was really encouraging reading that you are 30+ years positive...gave me alot of hope

petros,

I don't have anything to go on but my experience in the "old" hiv days. (lack of "good" meds, some luck with the timing of how the virus affected me, and the medical knowledge of the time.)
please don't base your decision on my experience.
starting meds now (or soon) might be the best idea.
sorry if it seems like I am putting you back on the fence on your decision but my is/was that the decision is yours.
I hope you have a doctor that you have faith in and you are able to communicate with him/her about your concerns.
maybe others here with more knowledge than I will pipe in with their thoughts.
take a deep breath.
hope you stay in touch with us and let us get to know you better.

m.

ps- agree with Jeff.
(we were posting at the same time.)
« Last Edit: June 17, 2013, 08:02:24 pm by mitch777 »
33 years hiv+ with a curtsy.

Offline Newguy

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Re: Starting early medication (3 months of infection)
« Reply #12 on: June 17, 2013, 08:38:13 pm »
START ASAP!

Although you might not be ready it appears the science suggests the sooner you start the better. This is evidence based. The less memory cells you have infected the better your outcome should be.

Good Luck and stay strong. The side effects are overrated, I too was PETRIFIED to start meds, but seven months later I laugh at myself for being so scared. You have two choices 1) let a retrovirus uncontrollably replicate in and wreak havoc on your immune system or 2) swallow highly effective ultra modern slightly modified enzyme inhibitors and stop or greatly reduce HIV's damage to your immune system. The choice should be clear. It wasn't for me seven months ago but it is now.

Good Luck

Offline mecch

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Re: Starting early medication (3 months of infection)
« Reply #13 on: June 17, 2013, 10:13:50 pm »
You have two choices 1) let a retrovirus uncontrollably replicate in and wreak havoc on your immune system or 2) swallow highly effective ultra modern slightly modified enzyme inhibitors and stop or greatly reduce HIV's damage to your immune system.

 ;D wow someone nominate this poster for a Clio Award.  8)

You could sell ice to an Eskimo!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Jmarksto

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Re: Starting early medication (3 months of infection)
« Reply #14 on: June 17, 2013, 10:42:34 pm »
You could sell ice to an Eskimo!

well...Eskimos don't really need more ice, although we do need the meds.  Perhaps it would be more like selling blankets to Eskimos.

While Newguy's argument was the most emphatic, I actually think Jeff's is the most convincing:

The truth is that I and many other LTS have some significant health problems because of not getting into treatment sooner

This is the calm voice of wisdom and experience -- the question is not just about living longer, but the long term health problems with delayed treatment.

It seems the general consensus is that it would be best to start treatment sooner rather than later, but you also have to be psychologically ready, or you may have adherence problems.
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45% VL 25
02/25/14 CD4   792/37% VL UD
07/09/14 CD4 1004/39% VL UD
11/03/14 CD4   711/34% VL UD
03/13/15 CD4   833/36% VL UD
04/??/15 Truvada & Tivicay
06/01/15 CD4 1100/50% VL UD
10/16/15 CD4   826/43% VL UD
??/??/2017 Descov & Tivicay
2017 VL UD, CD4 stable around 850
2018 VL UD, CD4 stable around 850

Offline leatherman

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Re: Starting early medication (3 months of infection)
« Reply #15 on: June 18, 2013, 01:03:01 am »
but you also have to be psychologically ready
I often find this line of thought sorta odd. We don't ask if diabetics are psychologically ready to take insulin shots for the rest of their lives. Doctors usually don't ask if people are psychologically ready for high blood pressure or cholestrol medications. We don't ask people with infections if they are "ready" to remain adherent to a regimen of antibiotic treatment.

Usually people are diagnosed with an illness, medication is prescribed (rather than waiting*, as has been mentioned elsewhere in this thread), and expected to take it .... or not, and suffer the consequences.


*as someone else who has survived with HIV for nearly 30 yrs and been on meds for 20, I would point out that the "wait until 350" days were the wait-until days because those early meds DID have some negative consequences (ie bad side effects). AZT was pretty wicked and waiting until you were about to die wasn't such a bad idea about when to take AZT. However here in 2013, waiting any time at all after diagnosis to take Atripla, Complera, or Stribild just seems stupid. Why let HIV continue to damage your immune system, your brain, your functions when you can (like with other illnesses/diseases) start medication immediately and move on to being as well as possible.
leatherman (aka Michael)

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Offline jkinatl2

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Re: Starting early medication (3 months of infection)
« Reply #16 on: June 18, 2013, 01:29:27 am »
I often find this line of thought sorta odd. We don't ask if diabetics are psychologically ready to take insulin shots for the rest of their lives. Doctors usually don't ask if people are psychologically ready for high blood pressure or cholestrol medications. We don't ask people with infections if they are "ready" to remain adherent to a regimen of antibiotic treatment.

Usually people are diagnosed with an illness, medication is prescribed (rather than waiting*, as has been mentioned elsewhere in this thread), and expected to take it .... or not, and suffer the consequences.


*as someone else who has survived with HIV for nearly 30 yrs and been on meds for 20, I would point out that the "wait until 350" days were the wait-until days because those early meds DID have some negative consequences (ie bad side effects). AZT was pretty wicked and waiting until you were about to die wasn't such a bad idea about when to take AZT. However here in 2013, waiting any time at all after diagnosis to take Atripla, Complera, or Stribild just seems stupid. Why let HIV continue to damage your immune system, your brain, your functions when you can (like with other illnesses/diseases) start medication immediately and move on to being as well as possible.

I agree, with only a few caveats:

1) If someone has an ongoing issue (drug or alcohol abuse, unmedicayed bipolar/depressive disorder) that might actively interfere with his/her ability to consistently take the meds, then by all means, s/he should take the necessary time to address those issues rather than burn through regimen.

2) A mechanism of some sort should be inthe process of taking place to pay for the meds. Applying for assistance, waiting for insurance to kick in - even waiting to move out of a parent's gouse so that your assets no longer disqualify you for aid, if necessary.

The risk of severe side effects is a fraction of what it used to be. And there are enough meds to choose from to make switching from a problematic medication fairly easy. But establishing a relationship with a doctor you can trust is very important.

For the newly diagnosed, I absolutely advocate starting treatment earlier than later. The weeks or months it might take to get one's life to a place where treatment success can be time well spent, as it provides an underpinning for a marathon, not a sprint.

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Offline leatherman

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Re: Starting early medication (3 months of infection)
« Reply #17 on: June 18, 2013, 02:26:26 am »
1) If someone has an ongoing issue (drug or alcohol abuse, unmedicayed bipolar/depressive disorder) that might actively interfere with his/her ability to consistently take the meds, then by all means, s/he should take the necessary time to address those issues rather than burn through regimen.
by all means, issues like you pose should be addressed. However, I just kinda get the feeling that when this "psychologically ready" argument is put out there, it makes it seem as if everyone needing to go onto ARVs MUST has some sort of risky behavior/poor mental or emotional health problems that must be addressed first.

(not meaning to offend anyone here; but just using this as an example) Not everyone that gets diagnosed HIV positive is a meth-head that couldn't control their risky behavior and needs to get their life in order before starting meds. Many people are just simply people who didn't take precautions when having sex and got infected with HIV (just like others were infected with STIs or others who got pregnant through having unprotected sex)

Of course, for the 1/3 of HIV positive people diagnosed in a hospital with AIDS/OIs, medical professionals usually forego worrying about the patient being "psychologically ready" and ready or not (emotionally or financially), they are immediately put on ARVs to stave off an AIDS death.

The weeks or months it might take to get one's life to a place where treatment success can be time well spent, as it provides an underpinning for a marathon, not a sprint.
this is an excellent point. often trying to get reliable access to medications takes time and this "extra" time  allows people time to adjust to their diagnosis and to prepare to be adherent.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline oksikoko

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Re: Starting early medication (3 months of infection)
« Reply #18 on: June 18, 2013, 03:06:35 am »
I often find this line of thought sorta odd. We don't ask if diabetics are psychologically ready to take insulin shots for the rest of their lives. Doctors usually don't ask if people are psychologically ready for high blood pressure or cholestrol medications. We don't ask people with infections if they are "ready" to remain adherent to a regimen of antibiotic treatment.

Correct me (please) if I'm wrong, but isn't the difference with, say, diabetes the following:

Let's say:
a) I'm diabetic and start medication for it,  then
b) I either quit or adhere poorly to the regimen, then
c) I might get sick, but
d) I can pick up with insulin again and improve my health (assuming diabetes didn't ravage me in the meantime).

No harm, no foul. However:

If (haha) I'm HIV+ and start ART or do it sporadically, am I not in danger of developing a resistance to the drug I poorly adhered to such that I can't take it or (possibly) related drugs in the future? Worse yet, though unlikely, couldn't I potentially release a drug resistant strain into the wild (if that strain happens to make it through the genetic bottleneck and into a new person)?

Starting meds is a personal decision, obviously, and if it's the right choice for you, it can't really be the wrong choice. But the fact that ART seems to make us less contagious is all that I needed to know. The other arguments for and against are, to me, noise and filler.

Code: [Select]
2014-11-14: CD4 Wars Episode II: Return of the Stribild (released in Europe as Stribild II: Werewolf Bitch)
2014-11-06:                ☣ VL (→) 12,627      ☣ CD4 (→) 639
2014-??-??: off treatment  ☣ VL (?)              ☣ CD4 (?)
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
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Offline leatherman

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Re: Starting early medication (3 months of infection)
« Reply #19 on: June 18, 2013, 09:39:47 am »
(assuming diabetes didn't ravage me in the meantime).

No harm, no foul.
so, in your own words, there could be harm then. ;) :D

Of course, these aren't perfect comparisons but HIV is just another one of thousands of diseases and taking ARVs shouldn't be any different than taking meds for any other issue. The whole debate "do I take them now, do I take them later, I'm afraid of the meds, what about the side effects" should be no different than dealing with any other disease. For decades, I have felt that we've turned HIV into something "special" and actually created some of the stigma around the disease by making it seem different than what it is - another one of thousands of diseases on the planet.
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Offline leatherman

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Re: Starting early medication (3 months of infection)
« Reply #20 on: June 18, 2013, 09:46:37 am »
i made this a separate reply because I think it's that important!

But the fact that ART seems to make us less contagious is all that I needed to know. The other arguments for and against are, to me, noise and filler.
oh no! I think you have that totally turned around. the MOST important fact about ART is that it is the ONLY thing that is effective against HIV.

Being less contagious is nice; but condoms (or even abstinence) can easily stop the spread the disease and are way less costly than ARVs as a containment measure for HIV. However, as one of those people brought back from the brink of death (the Lazarus effect) by ARVs, not dying of AIDS is the MOST important acccomplishment of ARVs ;) In no way is that noise and filler.

leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Jeff G

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Re: Starting early medication (3 months of infection)
« Reply #21 on: June 18, 2013, 09:52:00 am »
Hi Mike , HIV as you know is a fatal condition if left untreated except for the few elite controllers out there , its not uncommon when a person gets a diagnoses of cancer or needs an organ transplant to ask themselves is this is this a battle I want to fight .

To my way of thinking for your point to be a valid one you would have to assume that treatment is inevitable when in fact it is not . There are some people who will not be able to access care because of poverty or homelessness and mental illness .

No matter how you slice it the statement I'm not ready to commit to a lifetime of meds is an understandable statement for a person who is coming to terms with an HIV diagnosis .       
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Offline newt

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Re: Starting early medication (3 months of infection)
« Reply #22 on: June 18, 2013, 09:54:18 am »
Hello

There is no really good research to say that the risk  of illness or death is lower/higher if you start treatment at a CD4 count of 350 compared to a higher count like 500. American experts have looked at several pieces of research and concluded that it is better to treat at any CD4 count, but this is an expert opinion, not a research finding.

There is modest evidence from research in France that treatment in serocoversion helps preserve immune function to some degree. But it is impossible to say from this research if taking treatment in seroconversion means that you will live longer or have better health.

The big research project looking at life expectancy, the ART-CC study, finds that if your CD4 count is above 500 after 5 years on treatment your life expectancy is more or less equal to that of someone without HIV. This is not related to CD4 count at time of starting treatment.

Hope this helps

- matt
"The object is to be a well patient, not a good patient"

Offline wolfter

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Re: Starting early medication (3 months of infection)
« Reply #23 on: June 18, 2013, 10:25:53 am »


 The side effects are overrated, I too was PETRIFIED to start meds, but seven months later I laugh at myself for being so scared.

Side effort are in deed overrated unless you happen to be one of those who actually suffers them. ;)
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Offline oksikoko

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Re: Starting early medication (3 months of infection)
« Reply #24 on: June 18, 2013, 10:35:09 am »
i made this a separate reply because I think it's that important!
oh no! I think you have that totally turned around. the MOST important fact about ART is that it is the ONLY thing that is effective against HIV.

Being less contagious is nice; but condoms (or even abstinence) can easily stop the spread the disease and are way less costly than ARVs as a containment measure for HIV. However, as one of those people brought back from the brink of death (the Lazarus effect) by ARVs, not dying of AIDS is the MOST important acccomplishment of ARVs ;) In no way is that noise and filler.

Emphasis on the "to me". ;) I was irrationally phobic about being contagious before I was positive, so now...oi. I would take ART even if it had no effect on my health as long as TasP were still in play, meaning as long as it made me less contagious. I was just reading about early ART being possibly detrimental in certain settings, though, so I can't extrapolate my own context onto other people. Glad ART works for me on all accounts except for the minor but growing gastrointestinal effects it seems to be causing. As wolfter just wrote, side effects are overrated unless they happen to you. ;)
Code: [Select]
2014-11-14: CD4 Wars Episode II: Return of the Stribild (released in Europe as Stribild II: Werewolf Bitch)
2014-11-06:                ☣ VL (→) 12,627      ☣ CD4 (→) 639
2014-??-??: off treatment  ☣ VL (?)              ☣ CD4 (?)
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

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Offline mecch

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Re: Starting early medication (3 months of infection)
« Reply #25 on: June 18, 2013, 02:05:53 pm »
Someone who does not have a pressing need to start HAART, has the chance to consider "psychological readiness." 
Psychologial readiness is a catch phrase that can collect all sorts of questions and considerations.  Very individual. 
Being "ready to take medicine for the rest of my life" might be a misnomer. Might not really be looking forward, but rather confusion about being HIV positive right now, coming to terms with that, learning about treatment, etc etc. One person might have misguided or misinformed fears about the medicine. Another, finances. Another, stigma.  and on and on. 
All of us already on HAART, don't really know what its going to be like in 10 years time or 20 years time.  We all have the happy news that our life expectancy is rather long, so "for the rest of my life", its not really all that important of a consideration.  Anyway, I don't feel all that compelled by this way of looking at things.... But I know many people do get all blocked up thinking about that... Before starting, that is....

Its a rather encouraging position that we are in, where someone can live in a country, and individual situation, where there are options.... Start now. Wait, etc.

I guess the best strategy is to talk to people like us with a little experience, and talk to one's own doctors.  It's probably best that the "thinking period" is rather structured, so as to get the good info required, ask the right questions, and also avoid going off on what ifs, collecting information that does not apply, old info, etc etc.
« Last Edit: June 18, 2013, 02:09:34 pm by mecch »
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Offline petros0035

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Re: Starting early medication (3 months of infection)
« Reply #26 on: June 18, 2013, 03:57:13 pm »
Thanks again for your replies...
Now i'm thinking of starting...
Just to answer some questions...no i don't have alchool problems or any drug problems, the goverment provides the meds and i do not have any emotional/psychological issues (apart from the shock of finding out im positive)
Also i know i will not have a problem of commiting to the medication...i am just afraid of it and the side effects.
As for my cd4 count i cant really say since i am still in serocoversion. Had 2 blood tests with 1 week difference (in April)...the first one showed 628 cd4, the 2nd one showed 418 cd4. Also had another last week which showed 412cd4 but the doctor says thats normal and that now i am in 'bottom' and my cd4 should start to rise up when i get out of serocoversion phase
As for viral load it was 168.000 copies/ml

Now really after reading all your opinions and reading that French research paper i think i'll take my chances in starting. What i thought so far is that if left untreated the HIV virus causes damage to your system which it CAN be recovered with ART...but as i read some damage cannot. So i guess i better prevent as much damage as i can. Build a stronger organism while i'm still young for the years to come...and hope that i will be in that small percentage the French research showed :)

By the way if someone wants to debate on the pros of not starting treatment (apart from adherence, psychological, or drug problems) please do so. But please be on medical facts only...

Thanks and will get back to you when i get that doctor meeting about what would be the best starting combo.
Doctor says i cannot start with Atripla or Complera because they first need to see how much resistant i am the the ARV's or something like that...he was telling me something about a 4 pill combo or a 3 pill combo. I dont even remember their names but i do remember telling me that one of the combo's might make u abit yellow in the eyes.

Stuff like that is what scares the hell out of me and makes me not wanting to start. Side effects like that yellow thing in eyes which might lead to my social circle figuring out that i am hiv+, loosing my job etc
Also i've come to figure that the first 2-3 weeks until your body gets used to meds, that will be quite hard. Seriously i cant take 3 weeks of work :( At least not at this point...

Is that true? My thoughts above apart from the starting or not thing

Offline newt

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Re: Starting early medication (3 months of infection)
« Reply #27 on: June 18, 2013, 04:12:19 pm »
All modern combos are as effective as each other. Some may be 1 pill, some 4, but 1 x day is possible with several combinations.

Atripla contains a drug called efavirenz which can affect our sleep and mood. Make sure this is not important to your daily functioning.

The med which makes your eyes yellow is Reyataz.

Also, check that the drugs can be supplied. There is no use starting then stopping, it leads to resistance.

Taking your meds every day will stop resistance and allow you to use a combination indefinitely.

New drugs will appear in 2-5 years that will have less side effects. Think of your combination as for now.

Your doc should do a resistance test before you start treatment, but if this is not possible, an NNRTI combination like Atripla is a better start. PI based combos, like Reyataz and Prezista, are different in terms of resistance and have a higher barrier to resistance.

Side effects are over-rated. Yes, some people will get them, but they are not inevitable, or if you get them they pass after a few weeks.

A few weeks thinking time will make no difference.

Useful link:

i-Base Introduction to Combination Therapy
http://i-base.info/guides/starting

Good luck.

- matt
« Last Edit: June 18, 2013, 04:14:28 pm by newt »
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Offline oksikoko

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Re: Starting early medication (3 months of infection)
« Reply #28 on: June 18, 2013, 04:14:54 pm »
Hey, Petros, for what it's worth, I started ART on December 14, 2012, and though I've had some side effects, I haven't had any which would have kept me from work - unless I'm forgetting something - and as long as I have simethicone, haha. I say "would have" because I happen to be unemployed right now, but my point is, ART didn't affect me negatively enough to interfere with life too much. I actually felt much better at first because I had a viral load similar to yours and had been sick and fatigued prior to therapy.

Some people do have side effects, though. It's always a possibility with any drug, unfortunately. :-/

I take Stribild, which is four drugs, and may have been the "4 pill combo" your doctor talked about. I don't think it's approved in Europe yet, though, so maybe he was talking about something else.

Oh, and by the way, if you decide to start treatment and have an iPhone and are interested in this sort of thing, there's a Greece-centric app that helps with remembering to take your pills, etc.. It *looks* nice, but my Greek only goes as far as καλημέρα, καλησπέρα, that sort of thing. ;)

Be+ app: https://itunes.apple.com/us/app/be+/id532189186?mt=8
Code: [Select]
2014-11-14: CD4 Wars Episode II: Return of the Stribild (released in Europe as Stribild II: Werewolf Bitch)
2014-11-06:                ☣ VL (→) 12,627      ☣ CD4 (→) 639
2014-??-??: off treatment  ☣ VL (?)              ☣ CD4 (?)
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

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Offline buginme2

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Re: Starting early medication (3 months of infection)
« Reply #29 on: June 18, 2013, 04:16:46 pm »
It's normal to be scared of side effects. In the vast majority of cases side effects are not a problem.

When I started meds I started on Atripla. I didn't require any time of work and I was also in grad school at the time and was scared that it would affect my work at school. It didn't. 

Complera is probably out as an option for you since your viral load is over 100,000. 

The yellow eyes side effect is from.Reyataz.  It happens but not to everyone.  There are lessons about each med here you can read up on it if you start with that. If you decide against Reyataz there are other options such as Stribild (I don't think it's available.in Europe yet, could be wrong). Prezista and Isentress arealso options plus Atripla.
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Offline jkinatl2

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Re: Starting early medication (3 months of infection)
« Reply #30 on: June 18, 2013, 04:20:01 pm »
I am assuming that your doctor wants to put you on Reyetaz, a drug whose side effect  csan include what is almost ALWAYS a temporary yellowing of the eyes. As a matter of fact, MOST of the side effects from the meds are temporary, and will not be severe enough for you to miss work. Those days are a decade or more behind us.

You have little choice but to embark on the steep learning curve of HIV and it's medications. It will be a help to get the list of meds you may begin, and research them.  You don't have to know everything, but you should at least kno the stuff that pertains to you.

As someone with this fear, I urge you to do two things.

1) Take notes. If you are scared about the impact of a medication, why in the world wouldn't you think to remember the medication you are being offered? Bring paper and a pen to the office, or ask for one. Take notes.

Then, come back to this site and compare the drugs to the section at the top of this page called "meds."

http://www.aidsmeds.com/list.shtml

And then, come back into the forums and ask people who are ON those meds what their experiences were. The literature alone can seem daunting, but knowing how things work in the real world should make your decision easier.

I see no compelling argument in hesitating. Preserving your innate immune system is a choice you only get to make once.

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Offline oksikoko

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Re: Starting early medication (3 months of infection)
« Reply #31 on: June 18, 2013, 04:23:14 pm »
Preserving your innate immune system is a choice you only get to make once.

Can we get a mascot like Smokey the Bear for this line? Maybe Adhery the Aardvark? "Only you can preserve your innate immune system."
Code: [Select]
2014-11-14: CD4 Wars Episode II: Return of the Stribild (released in Europe as Stribild II: Werewolf Bitch)
2014-11-06:                ☣ VL (→) 12,627      ☣ CD4 (→) 639
2014-??-??: off treatment  ☣ VL (?)              ☣ CD4 (?)
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

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Offline tednlou2

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Re: Starting early medication (3 months of infection)
« Reply #32 on: June 19, 2013, 12:46:39 am »
When I was diagnosed, the recommendation was 350.  Then, they said 500.  Now, they say everyone should be on meds.  During this time, some experts said they didn't think there was much benefit of starting above 500, except to be less infectious to partners.  So, the recommendations have changed so much in a short time.  It can be confusing.

It can also be confusing when you hear some say meds are our friends and rarely cause health issues.  But, then you read what two members/moderators said in the "People Think It's Over" thread.

One said, "If you guys want to avoid some of the things we LTS deal with it wont be only because there are better treatment or people get treatment earlier . Many of the things we deal with as LTS are caused by the same drugs you guys take . Atripla caused me to get diabetes and many of the other drugs have potential side effects and that can contribute to heart , liver and kidney disease."  Another described the meds as "dangerous chemicals." 

When the recommendations have changed so much and you have decent labs, it is understandable why some are conflicted about when to take the plunge.  I know most experts say uncontrolled HIV, even at lower levels, is much, much worse than what any possible med health issues may cause. 

Offline jkinatl2

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Re: Starting early medication (3 months of infection)
« Reply #33 on: June 19, 2013, 01:08:31 am »
When I was diagnosed, the recommendation was 350.  Then, they said 500.  Now, they say everyone should be on meds.  During this time, some experts said they didn't think there was much benefit of starting above 500, except to be less infectious to partners.  So, the recommendations have changed so much in a short time.  It can be confusing.

It can also be confusing when you hear some say meds are our friends and rarely cause health issues.  But, then you read what two members/moderators said in the "People Think It's Over" thread.

One said, "If you guys want to avoid some of the things we LTS deal with it wont be only because there are better treatment or people get treatment earlier . Many of the things we deal with as LTS are caused by the same drugs you guys take . Atripla caused me to get diabetes and many of the other drugs have potential side effects and that can contribute to heart , liver and kidney disease."  Another described the meds as "dangerous chemicals." 

When the recommendations have changed so much and you have decent labs, it is understandable why some are conflicted about when to take the plunge.  I know most experts say uncontrolled HIV, even at lower levels, is much, much worse than what any possible med health issues may cause. 

This is why one uses critical thinking to determine the validity of any given statement.

A) you consider the source. Does this poster say anything positive abotu meds? Is his/her opinion strongly colored by his/her past?

B) You consider the timeline. Are we talking about medications available today? Medications currently prescribed in developing countries?

C) you consider the credentials. Does this person continue research on meds? Is this person using the bias of his past experiences to taint his/her opinion?

Your mileage may vary. Everyone's does to a degree with HIV. But just because there are different perspectives doesn't mean anyone's opinion is invalid. You simply have to use critical thinking to determine whether or not a particular poster's experiences and opinions are applicable to YOU.

It's far less confusing when you apply critical thought to the posts and posters.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline EUINAU

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Re: Starting early medication (3 months of infection)
« Reply #34 on: June 23, 2013, 05:08:43 pm »
I was infected last week of April this year and diagnosed mid May... I did not have much time to think about meds, my doctor and nurse were fantastic and did not push me to make a decision. As I had to travel overseas and did not want to have any effect only work... I asked for meds as I know I will feel better when having sex when my VL gets to UD level. 2 days later I started my meds. I am on I/T twice a day regimen. My initial lab details were very high over 1 Mil though I think. The nurse said over 5mil? As I am overseas I have to wait for another 4 weeks to have my tests.

I wake up with sweaty chest at night, but that used to happen to me even before I got infected. I do have days that are bad because of gas but days without it. Lucky I have my own office. :)

I find that my first 2-3 weeks at work were not very productive but I do not think it was because of meds, rather my circumstances.

I do have rather dark urine and so try to drink as much water as possible to ensure the urine is clear but as I have no pain I'll keep using the meds until mid next month when I will have my tests done.

I take my meds at 7 am/pm and only rarely I cannot sleep but again I don't think it's because of the meds.

I am one of those guys that buys a lot of multivitamins and never takes them... Well I have not missed any of my meds. I have a healthy diet and drink plenty of water.

I am glad I decided to start the treatment so early.

Good luck with the decision!!!

Offline mecch

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Re: Starting early medication (3 months of infection)
« Reply #35 on: June 23, 2013, 06:15:45 pm »
EUINAU - hey there, welcome to the forums.
So, wow, you have been treated in mid conversion, that's why your viral load was so high, and yep, it is indeed possible it was 5 million..... Anyway, that's history now...
Keep taking those pills and try to keep it as regularly scheduled as possible, its very important especially when beginning a treatment. So that's Isentress Truvada? Just checking - if its Isentress Truvada, the Truvada is just once a day....
 
You mentioned vitamins, and dark urine.  If you are trying to take all the vitamins again (in the past, being lax), maybe better to hold off...

The HAART alone is enough to get used to.  Yes, for drinking lots of water, good idea...  Lay off drinking and heavy foods for the moment too, maybe that will help with the dark urine. 

You got a lot of stamina and conviction to work right through all this, so congratulations and don't worry if the concentration dipped a little, for awhile...

I was a space cadet my first weeks of HAART, but muddled through...
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: Starting early medication (3 months of infection)
« Reply #36 on: June 24, 2013, 07:28:46 am »
Hi Euinau, welcome to the forums.


//snip//

I am on I/T twice a day regimen. 

//snip//

I do have rather dark urine and so try to drink as much water as possible to ensure the urine is clear but as I have no pain I'll keep using the meds until mid next month when I will have my tests done.



So that's Isentress Truvada? Just checking - if its Isentress Truvada, the Truvada is just once a day....


Mecch brings up a good point - are you also taking the Truvada twice a day? You shouldn't be; you should only be taking the Isentress twice a day.

Truvada can be hard on the kidneys so overdosing by taking it twice a day isn't a good idea. If you are taking it twice a day, that may be why you're experiencing dark urine.

If you're only taking it once a day, the dark urine probably has more to do with needing more water than the meds. Make sure you drink plenty of water each day and it shouldn't be a problem.
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Offline EUINAU

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Re: Starting early medication (3 months of infection)
« Reply #37 on: June 24, 2013, 04:46:44 pm »
Thanks Mecch and Ann, don't mean to hijack the thread. Yes I am taking Isentress and Truvada... Ha still don't know which one is which... Pink twice a day and blue once a day :)

Yes I had no choice but go back to work.... It was enough to find out that my life will never be the same and I have to get through and financial stability is important as I just started new job not too long ago... I figured being busy and not sorry for myself was my best bet. I was more worried about traveling with my meds - 3 month supply through customs and for no one at work to find out. I was actually late to work by 4 days as had to wait for final DNA test and issue of my meds....

I do drink a lot of water, I am not really a drinker although the nurse told me it was OK to drink. And I really eat well I think. Mostly grilled chicken or fish and vegetables.

I was infected on 22nd Apr and started meds on 17th May so was told by the nurse and doc I was very early in my conversion....

I am glad I found this forum as to be honest I never really knew much about the virus and don't know of anyone who is positive.

:)

 


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