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Author Topic: How long on same regimen?  (Read 1635 times)

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Offline an92

  • Member
  • Posts: 22
How long on same regimen?
« on: June 12, 2018, 05:37:05 pm »
Hello all!

I’ve recently started my treatment in the past month with Descovy and Tivicay, which seems to be working from the first test results.

Just out of personal interest, I have a question for more experienced members: how many years have you been able to stay on your regimen, before having to switch to another? Is it realistic to be on the same regimen for many years (like 5 or even 10)?

Offline LeftyBowler300

  • Member
  • Posts: 73
Re: How long on same regimen?
« Reply #1 on: June 12, 2018, 06:43:42 pm »
People have stayed undetectable taking Atripla for many years, and your combination involves an integrase inhibitor, which is much more potent and harder to develop resistance against. As long as you're adherent you should be able to stay on that combination for your lifetime, or until better meds get approved, with the latter being more likely.
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh... wtf
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Challenge Accepted.

Offline harleymc

  • Member
  • Posts: 1,052
Re: How long on same regimen?
« Reply #2 on: June 13, 2018, 04:49:36 am »
Yes we have members on this forum who have been on regimes for 15 or so years. There really is no time limit, but often there are tweaks that can make a regime easier by swapping in/ out a medication.

Offline newbie2016

  • Member
  • Posts: 39
Re: How long on same regimen?
« Reply #3 on: June 13, 2018, 08:18:45 am »
tweaks because of side affects? 

Offline mecch

  • Member
  • Posts: 13,451
  • red pill? or blue pill?
Re: How long on same regimen?
« Reply #4 on: June 13, 2018, 09:23:36 am »
there are tweaks that can make a regime easier

Newbie - uarleymc said THAT CAN MAKE IT EASIER.     but sure maybe for a side effect as well.

I was encouraged to dump isentress - truvada for Triumeq because of some vague and possible long term benefit of one of the molecules in the new being slightly better than the one in the old, which was perfect anyway, imo.

Do you have a side effect?  If so, discuss it straight on.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Mightysure

  • Member
  • Posts: 383
Re: How long on same regimen?
« Reply #5 on: June 13, 2018, 11:56:58 am »
That's most certainly possible to be on the same regimen gor a long period of time,  especially with the newer meds that have better antiviral efficacy and fewer side effects.

I can see how you'd question this because at my local health department, they show a video in the waiting room of a young woman contracting HIV the first time she had sex.  Cut to her speaking to kids at a school about safe sex and she tells them  that the meds are keeping her alive, eventually they'll stop working and she'll die of AIDS.
Yes, in 2018, government health officials are still putting this 90s narrative of HIV.

But if they work now, and you maintain your dosing, there's no reason that they should stop working.

Offline leatherman

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  • Posts: 7,444
  • Google and HIV meds are Your Friends
Re: How long on same regimen?
« Reply #6 on: June 13, 2018, 12:36:56 pm »
tweaks because of side affects?
every drug affects some number of people with side effects. Just because you have a side effect to one doesn't mean you'll have the same side effect with another.

sometimes regimens are "tweaked" to combat a side effect and sometimes regimens are switched because, well, time goes by and regimens improve. for some of us, taking meds for 20 yrs or more, the improvement in meds is astounding and rather than keep using an older regimen (often with a higher incidence of long term effects) people will "upgrade" to newer meds. Sometimes regimens are changed as simply a way to reduce the pill burden (how many pills the patient has to take daily). Not everyone started with a 1-pill a day regimen (like how it happens more and more these days) and dropping even one or two pills can make daily adherence a lot easier to manage. Almost all regimens require 3 HIV meds to be effective. In the past these meds were separate and often had multiple dosing time. As time has gone on, more and more meds are been combined so that many people are now on 1-3 pill a day regimens.

for example, after 12 years on the same 8 pill a day regimen (although i did upgrade at one point, with a new pill that was a combo of 2 of my meds), I switched 2 yrs ago to new regimen of 3 pills a day. i just got the meds from my newest switch and I've only got 2 pills a day, with one med being shown to be less likely to develop resistance and fewer long term side effects

I probably won't change again (never say never ;) ) for a while - until that once a month injection comes to market ;)

possible long term benefit of one of the molecules in the new being slightly better than the one in the old, which was perfect anyway, imo.
when my doc recently discussed with me about switching from raltegravir (isentress) to dolutegravir (tivicay) it was because of some molecule being better  ;D I don't know about the chemistry but I do know the studies are showing the tivicay is an improvement --- and it's one less pill a day. woohoo. So in 25 yrs I've gone from 32 pills (some were tablespoons of liquid med but thankfully norvir and kaletra are in the past for me ;) ) a day at all sorts of hours with all sorts of timing issues (2 hrs before food or 2 hrs after food, or every third thursday or something LOL) to 2 pills a day taken at the same time, with no food restrictions.

Yes, in 2018, government health officials are still putting this 90s narrative of HIV.
oh no. where is this if you don't mind me asking? If it's in the States, that situation is certainly something the Ryan White administration should know about.... and correct.
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline Mightysure

  • Member
  • Posts: 383
Re: How long on same regimen?
« Reply #7 on: June 13, 2018, 12:45:22 pm »
It absolutely happens in the states, in an NC county that borders SC.  They still show that video.  They also tell people that HIV can lie dormant and undetected for years and it takes two weeks for results to come back..sorry..my personal gripes.

Im wondering how Ryan White would have any impact.  It is the county health department.

Offline leatherman

  • Member
  • Posts: 7,444
  • Google and HIV meds are Your Friends
Re: How long on same regimen?
« Reply #8 on: June 13, 2018, 01:14:56 pm »
It absolutely happens in the states, in an NC county that borders SC.  They still show that video.  They also tell people that HIV can lie dormant and undetected for years and it takes two weeks for results to come back..sorry..my personal gripes.

Im wondering how Ryan White would have any impact.  It is the county health department.
those are good gripes though. Mis-education is worse that mis-understanding.

I'm a consumer chair (volunteer) for the CLT ryan white TGA quality committee and the advisory board, and am the consumer chair (volunteer) for the NC Ryan White Regional Quality committee. County health dpts receive RW funding for testing and treatment so NC RW does have some control. send me a pm with some details (where and when you saw this) and I'll contact my state peeps about finding out why this agency is putting out bad info. ;) tks!
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline JosephP

  • Member
  • Posts: 230
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: How long on same regimen?
« Reply #9 on: June 16, 2018, 11:13:47 pm »
Hello all!

I’ve recently started my treatment in the past month with Descovy and Tivicay, which seems to be working from the first test results.

Just out of personal interest, I have a question for more experienced members: how many years have you been able to stay on your regimen, before having to switch to another? Is it realistic to be on the same regimen for many years (like 5 or even 10)?

I believe people have stayed on the same regimen, if it works for them, for years on end. I was switched from Stribild to Genvoya because my ID doctor thought it was a better medication. That's probably when your regimen will change. When newer medications appear on the market.
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline MitchMiller

  • Member
  • Posts: 583
Re: How long on same regimen?
« Reply #10 on: July 01, 2018, 02:54:53 am »
16 years on Sustiva/Abacavir/Epivir and still counting

Lowered dosed of Sustiva from 600 to 400mg in 2014.

Offline pozBear

  • Member
  • Posts: 19
Re: How long on same regimen?
« Reply #11 on: July 01, 2018, 06:49:10 pm »
6 years on efavirenz, lamivudine and tenofovir in a sigle nightly pill that Brazilian government gives us here. NEVER missed a dose nor had a blip. I know it's old medicine but still works wonders for me, I do not feel like changing so soon.

Offline bufguy

  • Member
  • Posts: 194
Re: How long on same regimen?
« Reply #12 on: July 05, 2018, 02:45:08 pm »
I have been on Atripla since June 2008...Became undetectable by September 2008 and have continued so for the entire time. My CD4 level is always between 800 and 1000. I have been lucky to have had no side effects and have been almost 100% adherent...I've missed two doses in 10 years.
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline Expat1

  • Member
  • Posts: 141
Re: How long on same regimen?
« Reply #13 on: July 06, 2018, 05:18:36 pm »
Been on the same basic medicine for 4.5 years, one minor switch out (replace the Efavireze with Edurant) .  No problems.  Expect to remain on it and when Descovy becomes availiable, will switch out the TDF for TAF. 


Offline etaoinshrdlu

  • Member
  • Posts: 16
Re: How long on same regimen?
« Reply #14 on: August 14, 2018, 03:49:48 am »
2007: Truvada, Reyataz, Norvir. 3 pills per day, 4 drugs.

2010: Epzicom, Reyataz. 3 pills per day, 3 drugs. Wanted to reduce costs and eliminate using my refrigerator as a drug storage unit. Wasn't thrilled with potential bone and kidney issues associated with tenofovir. Needed to increase the atazanavir dose to compensate for no booster. Copay for atazanavir didn't change and overall costs dropped by removing ritonavir.

2015: Triumeq. 1 pill per day, 3 drugs. Wanted a single-tablet regimen. Happy to eliminate protease inhibitors.

2018: Juluca. 1 pill per day, 2 drugs. Happy to eliminate NRTIs and reduce the amount of drugs in my body. I have the K103N mutation which limits my options for NNRTIs. No efavirenz for me but rilpivirine works.

Strictly adherent, viral load consistently undetectable. My doctor is willing to accommodate changes for reasons of cost, convenience, and lower toxicity. He actually has little patience for the "if it works, don't change it" mode of thinking. His preference is to advance his patients forward as treatments continue to improve.

 


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