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Author Topic: how long can you stay on a regime?  (Read 5786 times)

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Offline findingaway

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how long can you stay on a regime?
« on: March 10, 2011, 01:59:16 AM »
I take Atripla and I keep reading all of these different articles and I am starting to have questions on how long I can take this regime? Do you have to change after a year, or does it vary? I just really don't know how often everyone has to change regimes.

Offline GSOgymrat

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Re: how long can you stay on a regime?
« Reply #1 on: March 10, 2011, 06:24:21 AM »
Typically you find a combo that gets your viral load undetectable with minimal side effects and you are on it indefinitely. I have been on my current combo for six years.

Offline woodshere

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Re: how long can you stay on a regime?
« Reply #2 on: March 10, 2011, 09:05:51 AM »
Have been on mine for 5 yrs, will stay on it until it fails.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline leatherman

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Re: how long can you stay on a regime?
« Reply #3 on: March 10, 2011, 11:25:13 AM »
there are 4 main reasons to change regimens - 1) unbearable side effects, 2) resistance to a medication, 3) the med isn't effective enough, or 4) to improve a regimen.

1) the majority of initial side effects usually diminish after the first few weeks. If these side effects are too extreme or last for too long a doctor or patient may want to change to something else. Of course long term effects won't be known until time has passed but those can cause a regimen change down the line.

2) resistance develops when someone doesn't stay adherent enough to the meds. When the med levels drop too low, the HIV can mutate and make the medication ineffective. So if the meds aren't working then they would need to be changed.

3) and similarly, if the meds just don't seem to be getting a patient down to undetectable within a reasonable amount of time,  then meds could be added or stitched out entirely to find the right potency.

4) in the past a lot of regimen changes have been made because older meds were less effective or harsher with more side effects (short and long term). Many of these issues have been worked on for the last decade or so in the epidemic and fewer regimen changes happen as frequently any more. However people who have been on treatment for many yrs occasionally do change regimens to take advantage of the newer meds which are less harsh and have few side effects.

My last two regimen changes were actually to switch to newer meds and fewer pills. I have gone in the last 14 yrs from 17 pills a days to only 3 a day now, and I no longer puke every day, so I have greatly appreciated my regimen changes. Though I've been on all sorts of meds since 1993, I have been on my current regimen for most of 7 yrs now.

so theoretically, if you don't have bad side effects, if the meds work well to getting your viral load to undetectable and you stay adherent to your meds, you could possibly stay on the same meds for decades or more. (since no one has technically been on Atripla for 30+ yrs yet we can't predict with total accuracy about that eventual outcome)  Failure of the medication as treatment and/or regimen change is not a guaranteed situation any longer. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline NycJoe

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Re: how long can you stay on a regime?
« Reply #4 on: March 10, 2011, 01:36:18 PM »
I have been on the same regimen for 7 years now and my latest numbers are better than ever.  (Atripla and before Atripla the combo of pills that make it).  I am hoping to stay on for many more years.  Have so far not had any noticeable side effects since the first week.  I think I have missed 5 doses in all these years.  Not only do I have pill containers, but I keep spare pills in my pocket, my car, my office, you name it.  I don't take any chances.  Not to mention my alarm that goes off at 11p to remind me just in case I forget or fall asleep (which are the times I missed after taking Ambien).

Joe

Offline Joe K

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Re: how long can you stay on a regime?
« Reply #5 on: March 10, 2011, 04:26:08 PM »
I have been on Viramune and Truvada for almost nine years. If it ain't broken, leave it the hell alone.

Offline eric48

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Re: how long can you stay on a regime?
« Reply #6 on: March 10, 2011, 06:19:20 PM »
Just for the sake of entertainment...

With all those virologically potent, bearable (and if not, there are options), once daily regimen on the table.

What is the next step? What would make someone who has been 10 years on A+ B + C (under whatever tableting formulation) once a day , adherent, etc, what would make someone switch ?

- cost ?
- once-a-week ?
- cure (at long last)
- implants (once - a - year)

Just curious...

Eric

Offline Hellraiser

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Re: how long can you stay on a regime?
« Reply #7 on: March 10, 2011, 06:24:25 PM »
Just for the sake of entertainment...

With all those virologically potent, bearable (and if not, there are options), once daily regimen on the table.

What is the next step? What would make someone who has been 10 years on A+ B + C (under whatever tableting formulation) once a day , adherent, etc, what would make someone switch ?

- cost ?
- once-a-week ?
- cure (at long last)
- implants (once - a - year)

Just curious...

Eric

You just answered your own question?

Offline leatherman

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Re: how long can you stay on a regime?
« Reply #8 on: March 10, 2011, 08:22:20 PM »
- once-a-week ?
...
- implants (once - a - year)
maybe combine these ideas, along with 'fewer doses a day', 'more effective dosage', etc and label them as "medication improvement". whether the dosage was more convenient (as once-a-day, once-a-week, by mplant etc) or more effective (kinda like "concentrated detergent", something like "extra strength atripla" using a smaller pill) people could make a "good" change of regimen rather than switching because of a problem.

so cost, cure or improvement are probably the 3 reasons to change a regimen outside of having resistance, failure, or side effects.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline denb45

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Re: how long can you stay on a regime?
« Reply #9 on: March 10, 2011, 08:25:20 PM »
I take Atripla and I keep reading all of these different articles and I am starting to have questions on how long I can take this regime? Do you have to change after a year, or does it vary? I just really don't know how often everyone has to change regimes.

As long as it keeps working for you  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline surf18

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Re: how long can you stay on a regime?
« Reply #10 on: March 10, 2011, 09:34:18 PM »
yea i agree
i would only switch if the new treatment
easier- like instead of three pills ill take one
less toxic
or just worked better too

Offline aztecan

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Re: how long can you stay on a regime?
« Reply #11 on: March 10, 2011, 09:40:16 PM »
I was on one combo for 11 years, and then switched only because of long-term side effects.

As Dennis said, if is ain't broken, don't fix it.

HUGS,

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

Offline denb45

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Re: how long can you stay on a regime?
« Reply #12 on: March 10, 2011, 09:46:02 PM »
I was on one combo for 11 years, and then switched only because of long-term side effects.

As Dennis said, if is ain't broken, don't fix it.

HUGS,

Mark


That was Joe's  ;D but yup  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline CaptCarl

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Re: how long can you stay on a regime?
« Reply #13 on: March 10, 2011, 09:49:36 PM »
  I have been on my current regime of HIV meds for about 3 or 4 years now. I had crappy adherence, and my doc discussed it with me and we agreed that it would make it easier for me if I only had to take pills once a day. So we altered things to be able to accomplish that. My adherence went up to about 75-80%.

   The all the transplant shit hit, and I had to realy work to keep my adherence as close to 100% as possible. So far I'm at about 95-97%, and I'm good with that. The times I miss are the night doses usually. The anti-rejection drugs exacerbate the insomnia that I have always had, and sometimes, I really jus need a good nights sleep, so I skip the night dose, and double up on the Ambien. Even then, five hours is about the best it gets.

CaptCarl
The only thing I can do straight is shoot..

Offline denb45

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Re: how long can you stay on a regime?
« Reply #14 on: March 10, 2011, 09:54:10 PM »
 I have been on my current regime of HIV meds for about 3 or 4 years now. I had crappy adherence, and my doc discussed it with me and we agreed that it would make it easier for me if I only had to take pills once a day. So we altered things to be able to accomplish that. My adherence went up to about 75-80%.

   The all the transplant shit hit, and I had to realy work to keep my adherence as close to 100% as possible. So far I'm at about 95-97%, and I'm good with that. The times I miss are the night doses usually. The anti-rejection drugs exacerbate the insomnia that I have always had, and sometimes, I really jus need a good nights sleep, so I skip the night dose, and double up on the Ambien. Even then, five hours is about the best it gets.

CaptCarl

WOW Carl,  will you have to take the  anti-rejection drugs for the rest of your life, just like the AVRs? this stuff is way above my pay-grade, I'll have to ask Bob, I'm sure he knows...
« Last Edit: March 10, 2011, 09:57:46 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

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Re: how long can you stay on a regime?
« Reply #15 on: March 10, 2011, 10:10:48 PM »
That was Joe's  ;D but yup  ;)

OOPS, old fart in action! :-[
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline denb45

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Re: how long can you stay on a regime?
« Reply #16 on: March 10, 2011, 10:12:49 PM »
OOPS, old fart in action! :-[

 :-* oh mark, now you know I'm the same age as you  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline elf

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Re: how long can you stay on a regime?
« Reply #17 on: March 10, 2011, 11:17:35 PM »
I'm on Kaletra and Epzicom/Kivexa and I hate it. :(
Let's have a Kiki!

Offline leatherman

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Re: how long can you stay on a regime?
« Reply #18 on: March 10, 2011, 11:21:50 PM »
I'm on Kaletra and Epzicom/Kivexa and I hate it. :(
it that because you dislike side effects from that regimen? or is there something other reason? Have you spoken to your doctor about a switch? Always be proactive - it's about your health. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline eric48

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Re: how long can you stay on a regime?
« Reply #19 on: March 11, 2011, 08:25:18 AM »
I'm on Kaletra and Epzicom/Kivexa and I hate it. :(

Hi,

I feel sorry for you

Cannot comment about Kaletra which I do not take.

Epzicom / Kivexa is the most likely in my Viramune+Kivexa combo to give me some anxiety effect, which I hope will fade with time.

There are lots of option, may be, some are not available to you, though...

There are a lot of switch trials that help make choices and guide your doctor should you guys want a switch.

I hate the virus so much !... So I consider myself quite lucky , that, at  least, I am at peace with the combo...

I certainly hope you will find your way to a combo you like (or, say , do not hate...)

Cheers

Eric




Offline Miss Philicia

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Re: how long can you stay on a regime?
« Reply #20 on: March 11, 2011, 09:21:43 AM »
I was on Kaletra for five years.  The key is simply ample amounts of imodium, and I don't mean just one a day either.  I've been on the components of Epzicom as well in the past, but most don't take issue with that portion.
"I’ve slept with enough men to know that I’m not gay"

Offline OneTampa

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Re: how long can you stay on a regime?
« Reply #21 on: March 12, 2011, 08:15:32 PM »
I've been on my low dose combo for about 11 years.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline randym431

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Re: how long can you stay on a regime?
« Reply #22 on: March 13, 2011, 04:27:50 AM »
The secret is staying adherent, never missing a dose. After 6 years now, I've went from cd4 of 83 to 890 today. The only words out of the doctors mouth when I visit, "well.. I don't have to ask if you are taking your meds every day".
I've never missed a dose. Have taken them 4 or 5 hours late a few times, but never missed in 6 years, Yes it can be done!

Offline denb45

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Re: how long can you stay on a regime?
« Reply #23 on: March 13, 2011, 11:40:21 AM »
The secret is staying adherent, never missing a dose. After 6 years now, I've went from cd4 of 83 to 890 today. The only words out of the doctors mouth when I visit, "well.. I don't have to ask if you are taking your meds every day".
I've never missed a dose. Have taken them 4 or 5 hours late a few times, but never missed in 6 years, Yes it can be done!

I'm 110% adherent, have been for the last 20yrs. but I've never broke the 300 to 400 T-cell range, that's as high as I'm ever gonna get, so says my ID-Doctor, and all of the ones before, do I have Resistance Strains and Mutations, hell yes I do....so being adherent, never missing a dose really doesn't guarantee you a high T-cell range, they just don't mean what they use to mean, you can still be healthy w/ only 200 to 100 T-cells as long as you remain undetectable.........the bottom line, T-cells don't mean shit......
« Last Edit: March 13, 2011, 11:48:52 AM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline leatherman

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Re: how long can you stay on a regime?
« Reply #24 on: March 13, 2011, 12:02:45 PM »
I'm 110% adherent, have been for the last 20yrs. but I've never broke to 300 to 400 T-cell range, that's as high as I'm ever gonna get, so says my ID-Doctor, and all of the ones before
good point Den. ;) taking meds really has nothing to do with cd4 count - except that taking meds reduces the viral load, ending the damage HIV is doing, and allowing your immune system to recover to whatever point it's going to recover to. Remaining adherent to meds does not correlate to lowered or raised cd4 counts; remaining adherent correlates only to sustained viral suppression (ie lowered viral load counts)

I'm back down to 266 (after reaching a peak in 20+yrs of 311) and yet it was 14 yrs ago tomorrow that I was last in a hospital (on my 36th bday and here I am turning 49) supposedly dying from the AIDS. But I only had about 12 cd4s then. Since then, my piddly 250ish amount has kept me quite healthy (and out of the hospital) for a long time now.

I'm 110% adherent.... do I have Resistance Strains and Mutations, hell yes I do....
What is the explanation for that resistance profile of your HIV? Normally resistance develops when the level of anti-HIV meds is below a threshold amount in the blood stream, allowing the HIV to mutate and negate the actions of the med. Were these prior resistance issues from the strain you were infected with? Or was it ineffective regimens? Or were you 100% adherent when these resistance issues happened? If you were 100% adherent to meds, and sustaining an undetectable VL, resistance should not have become an issue at all.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline denb45

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Re: how long can you stay on a regime?
« Reply #25 on: March 13, 2011, 12:12:32 PM »
This could be due to having taken just about every HIV Meds that has ever been out in the last 20 yrs. all of my Doctors past or present just don't know why that is , however, my percentage still remains about 15% to 16% and I still have an undetectable VL with that said, that is probably the best it's gonna get, unless, Big Phrama comes out with some new Drug that I, as well as others like me, can take to improve THIS
the bottom line here is I have AIDS, I've had it for a very long time, so, I'm not too worry about it
AIDS is AIDS  ;) it effects each and every one of us differently, there's really no black & white answer...
« Last Edit: March 13, 2011, 12:19:15 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline leatherman

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Re: how long can you stay on a regime?
« Reply #26 on: March 13, 2011, 12:59:05 PM »
my percentage still remains about 15% to 16% and I still have an undetectable VL
I think we're in agreement about the cd4s. Pill-taking has no direct effect on cd4 count. You get what cd4s you recover and that's that.  ;)

However, the explanation to the OP was that if one was adherent to one regimen, that also resulted in a suppressed (UD) viral load with minimal or no side effects, then one could theoretically stay on that regimen for an indefinite amount of time. (and that would be because HIV is unable to mutate to develop resistance when it's level is kept suppressed by an adequate regimen)

Yet you have said that you stayed adherent AND changed meds multiple times - along with developing resistance. So I was looking for other factors (ineffective meds not reaching UD, side effects, etc) that would make your situation not the norm.

Although I developed some resistant mutations because of poor adherence or poor performance by the medication, I have never developed resistance to meds that  I changed from to lessen side effects (because I did not allow the level of meds in my system to drop below the threshold level during the switch). Now that I have found a regimen with few side effects and that is effective against the HIV, I have not had to change meds for many years.

I was trying to understand how your situation was different in that you were 110% adherent and yet still developed resistance and had to change meds. I don't think it's possible to develop resistance while being that adherent and being UD, so I wondered what other factors were involved, that way the OP would understand that one day his meds wouldn't suddenly just quit working without a reason. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Inchlingblue

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Re: how long can you stay on a regime?
« Reply #27 on: March 13, 2011, 01:25:42 PM »
I've been on my low dose combo for about 11 years.

I'd be curious to know what that is. I think most of us are taking more meds than we need. Did you do TDM to determine lowering the dose?


To the OP, in the link below Dr. Gallant echoes what others have already said here:

If you take your meds faithfully and suppress viral replication, then the meds can last indefinitely. You could theoretically stay on the same combination for a lifetime. In my practice, I'm far more likely to change therapy because of a side effect or because something better has come along than because of failure and resistance.

LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/re__how_long_does_each_regime_last_before_failure_.html?contentInstanceId=544884&siteId=7151

Offline denb45

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Re: how long can you stay on a regime?
« Reply #28 on: March 13, 2011, 02:35:17 PM »
I'd be curious to know what that is. I think most of us are taking more meds than we need. Did you do TDM to determine lowering the dose?


To the OP, in the link below Dr. Gallant echoes what others have already said here:

If you take your meds faithfully and suppress viral replication, then the meds can last indefinitely. You could theoretically stay on the same combination for a lifetime. In my practice, I'm far more likely to change therapy because of a side effect or because something better has come along than because of failure and resistance.

LINK:

http://www.hopkins-aids.edu/q_a/patient/recent_questions/re__how_long_does_each_regime_last_before_failure_.html?contentInstanceId=544884&siteId=7151

Yeah, I used to change Meds every few yrs. (maybe 3 to 4 yrs. at a time) and I've had mine tweaked a lot
due to mutation or resistance, but never for failure, but I've been on my current combination for the last 4 yrs. it seems to be ok, as I'm still undetectable, so I'm not worried about any of this really, I'm just happy to
be ALIVE  ;)  my Doctors only changed my meds, if something new came along, but that is kinda standard...
« Last Edit: March 13, 2011, 02:49:16 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline denb45

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Re: how long can you stay on a regime?
« Reply #29 on: March 13, 2011, 02:43:04 PM »


I was trying to understand how your situation was different in that you were 110% adherent and yet still developed resistance and had to change meds. I don't think it's possible to develop resistance while being that adherent and being UD, so I wondered what other factors were involved, that way the OP would understand that one day his meds wouldn't suddenly just quit working without a reason. ;)

different strokes for different folks, I look at it this way, were different and not the same the way being adherent, resistance or even mutation might work in some of us, it aint always the same outcome......it's
just the luck of the draw.......
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Assurbanipal

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Re: how long can you stay on a regime?
« Reply #30 on: March 13, 2011, 08:01:10 PM »
To the OP -- most people nowadays seem to get to undetectable on their first drug regimen and as long as they are good about taking the pills they can stay on it until something better comes along.

I think we're in agreement about the cd4s. Pill-taking has no direct effect on cd4 count. You get what cd4s you recover and that's that.  ;)

How about "Pill taking is a necessary but not a sufficient condition" instead?

If you don't take the pills on a regular, recommended basis HIV is likely to mutate and eat your CD4 cells for lunch.  It is necessary.

Most people who are adherent to their medications then see a long term rise in their tcell counts (with a lot of up and down in the numbers by period but on average a rise over time).  But regular pill taking alone is not sufficient for everyone to see an increase in tcell counts.

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline mecch

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Re: how long can you stay on a regime?
« Reply #31 on: March 13, 2011, 09:37:17 PM »
I stopped sustiva for psychological side effects.  Was allergic to Reyataz, but also was in a high-stress time, so maybe that contributed to also finally having some allergic reactions to Intellence, which otherwise seemed like heaven.  Now the Insentress seems to be fine.  

Im pretty sure I'm 95-100 adherent.  I should probably pill count but by nature I resist keeping tabs on so many aspects of my life that keeping tabs on tabs hasn't been attractive.

I liked that my ID told me to make sure I get my two doses into me everyday and some distance between them and I manage to do that.  

Every year (well I've only been here 3) i see less people completely obsessed about precise timing of doses, which I never have been anyway.  But lenient timing - thats comforting if its really OK based on the combo one is on.

Will definitely enjoy a future development where its once a week or implanted or something - cause I would really rather this worked like auto payment of bills!  

I dont eat on schedule or do anything on schedule except work obligations. I didn't inherit my grandma's character - and she's doing well in her late 90's with her consistent and sensible lifestyle.
 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline cardsfan69

  • Member
  • Posts: 49
Re: how long can you stay on a regime?
« Reply #32 on: March 14, 2011, 06:21:54 PM »
I've been on the same regime that I started when i first tested poz almost 12yrs ago. So 12yrs for me. Viramune and Combivir. Last labs were 1015 tcells......no viral load.

 


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