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Author Topic: HAART HOLIDAY = Lunacy?  (Read 25308 times)

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Offline allopathicholistic

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HAART HOLIDAY = Lunacy?
« on: June 08, 2006, 02:02:06 pm »
I was thinking of taking a 6-12 month HAART holiday if I were to ever break 700 CD4

Is that lunacy?

I'm at 419 (18%)

VL under 70 copies

Offline Shawn Decker

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Re: HAART HOLIDAY = Lunacy?
« Reply #1 on: June 08, 2006, 02:51:32 pm »
Hello,

I'm not a doc, but I have some firsthand experience with drug holidays.  Last year, I was off meds for about 2 months.  My CD4 count was around 500, VL undetectable.  After the first month there was a dip in CD4 to 360, but the VL was undetectable, so I wasn't worried.  After the second month off, the VL skyrocketed to 500,000 and the CD4 was around 120.

I'm not trying to scare you.  Some of that response was attributed to a couple of years of doing 7/7 (one week on, one week off meds), which worked well while I was doing it.  I'm thinking about giving that another go.

Of course, your doctor won't support a holiday of any kind, structured or not. But meds issues tend to be more complicated for the people swallowing the pills.
Shawn

Offline The Canuck

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Re: HAART HOLIDAY = Lunacy?
« Reply #2 on: June 08, 2006, 02:59:28 pm »
Hello Shawn,

I think this article ( on this site ) will confirm what you experienced.

http://www.aidsmeds.com/news/am20060214croi01.html

Regards,

The Canuck

Offline aztecan

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Re: HAART HOLIDAY = Lunacy?
« Reply #3 on: June 09, 2006, 10:28:13 am »
I spoke about this subject last month to Dr. Bruce Williams, who runs the Truman Street Clinic in Albuquerque and provides care to the lion's share of people with HIV in New Mexico.

A number of years ago, a former doctor told me I was a candidate for an STI. I thought about it, and it was certainly alluring. But, in the end, I said no. I didn't want to mess with success, so to speak.

Williams told me last month I had made the right choice. He said evidence now shows the virus in those who take STIs tends to rebound more quickly than before believed and those who take STIs have a much higher risk of progressing more quickly to more serious medical situations than those who maintain their therapy.

This goes right along with what is stated in the article our Canuck posted above.

I would opt to stay on my regimen, were I you.

Just my 2¢ worth.

HUGS,

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

Offline allopathicholistic

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Re: HAART HOLIDAY = Lunacy?
« Reply #4 on: June 09, 2006, 01:08:06 pm »
Most of the research and sentiments seem to be in favor of not taking a HAART holiday. My doctor is also against drug holidays, surprise surprise.

 :-X <-- this is the closest thing i could find resembling a blank stare

 :-X

 :-X

(sits quietly for a minute) ...... Thanks everyone





Offline The Canuck

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Re: HAART HOLIDAY = Lunacy?
« Reply #5 on: June 09, 2006, 01:21:44 pm »
I'd like to add this. I was asked to participate into this SMART study a few years ago since I was a good candidate, but rather concerned if I should do it or not. I asked to my doctor a simple question, is it completely safe and do I risk of not being able to keep the same regimen later on ? She said there were no guarantee and didn't go further and decided not to participate.

I was glad I did ( like Mark above ) for having turned it down. I don't have any problems with my regimen and kept me undetectable for almost three years now so why taking chances of screwing this up ?

Regards,

The Canuck

Offline HIVworker

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Re: HAART HOLIDAY = Lunacy?
« Reply #6 on: June 10, 2006, 01:03:19 pm »
Most of the research and sentiments seem to be in favor of not   My doctor is also against drug holidays, surprise surprise

Why surprise, surprise?
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline allopathicholistic

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Re: HAART HOLIDAY = Lunacy?
« Reply #7 on: June 10, 2006, 04:29:08 pm »
Why surprise, surprise?

Before I even asked him the question I predicted his stance on drug holidays and of course he does not have a favorable view on them

Offline HIVworker

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Re: HAART HOLIDAY = Lunacy?
« Reply #8 on: June 10, 2006, 05:07:08 pm »
Well, they are a bad idea ...no?

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline jkinatl2

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Re: HAART HOLIDAY = Lunacy?
« Reply #9 on: June 10, 2006, 05:14:05 pm »
Yeah, one of the more important things about starting HAART is the simple fact that, in the vast majority of cases, one can never stop taking the drugs without HIV quickly rebounding and CD4 counts quickly dropping. It's sorta like viral Rogaine that way.

"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 allopathicholistic

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Re: HAART HOLIDAY = Lunacy?
« Reply #10 on: June 10, 2006, 05:25:34 pm »
Well, they are a bad idea ...no?

yeah my asking was just to see and hear (face to face) a medical professional ... after he blabbered about the scientific stuff, the look on his face was like 'bitch i'll slap the shit out of you if you take a haart holiday!' (just joking - we have  very good doc-patient chemistry)

Offline Ann

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Re: HAART HOLIDAY = Lunacy?
« Reply #11 on: June 10, 2006, 09:02:58 pm »
Hi Guys,

Today I received an email from the people at Clinical Care Options about this very subject.
Quote
The Final Nail? What the CD4+ T-Cell Count–Guided Treatment Interruption Strategy Has Taught Us
 W. David Hardy, MD
Associate Professor of Medicine in Residence
University of California, Los Angeles School of Medicine
Director, Infectious Disease and AIDS Unit
Cedars-Sinai Medical Center
Los Angeles, California

Kudos to the SMART (Capsule Summary),[1] Trivacan (Capsule Summary),[2] ACTG 5170 (Capsule Summary),[3] and STACCATO (Capsule Summary)[4] study teams for successfully completing and reporting the results from their respective CD4+ T-cell guided treatment strategy trials at the 13th Conference of Retroviruses and Opportunistic Infections in February.  Of special note is the fact that the SMART investigators collected, analyzed, and presented the preliminary data from this 5500-patient, 33-country trial less than 1 month after the Data and Safety Monitoring Board halted the trial. This was an extraordinary effort.

While the life-saving and morbidity-reducing merits of antiretroviral therapy are substantial, they come with a price—treatment fatigue and waning adherence, development of resistance, cardiovascular and metabolic toxicity, and high financial cost. Taken together, these CD4+ T-cell-guided treatment interruption trials provide both a reiteration of previous findings as well as an extension of our knowledge into new areas. It is intellectually satisfying when independent trials of similar design produce confirmatory data.

For those of us who still remember the horror of the pre-HAART era, when the idea of stopping successful antiretroviral therapy was viewed as insanity, the data generated by treatment interruption trials may come as little surprise. HIV has yet again reared its taunting head and reminded us of its seemingly intelligent design to wreak havoc, given the opportunity. Despite their cogent rationale, these trials will hopefully be the final nail in the coffin of our infatuation with the notion that we can somehow outwit this foe with anything less than continuous viral suppression.

Consistent with prior attempts to interrupt HAART, this latest variation on the theme has also failed to recommend this strategy, except for perhaps specifically defined areas such as resource-limited settings. From the Swiss-Spanish Intermittent Treatment Trial[5] and the long-cycle structured intermittent treatment trials by Dybul and colleagues,[6] we learned that the strategy of stopping and starting previously suppressive HAART on a scheduled protocol did not “autovaccinate” chronically HIV-infected individuals. Neither immunologic nor virologic benefit was achieved from these attempts to create new immunity by manipulating an immune system that had failed to respond to initial viral infection. In addition, we learned that some of these strategies, while reducing an individual’s exposure to antiretroviral agents, did not enhance quality of life but did induce resistance to the agents used.[7]

Studies by Rosenberg and Walker[8] taught us that intervening at an earlier time point in HIV infection was also not successful. Using HAART soon after seroconversion in an attempt to protect CD4+ T-cells from rapid destruction and allow them to act as helpers to support CD8+ T-cell-mediated immunity, and then stopping treatment to “re-expose” these newly educated CD8+ T-cells to HIV, unfortunately did not result in any benefit. These proof-of-concept trials did teach us at least 2 critical lessons regarding HIV infection, however—that HIV permeates and disregulates the human immune system very early after infection and that our current antiretrovirals that target viral enzymes have little effect on these early processes.

CPCRA 064 provided disappointing results from a strategy to manipulate viral resistance to antiretrovirals in treatment-experienced individuals by stopping their nonsuppressive HAART and allowing the virus to “revert to wild type” before initiating a new salvage regimen.[9] Although the majority of study participants’ genotype tests (based on standard population-based sequences from plasma) did indeed show reversion to wild type, no improvement in subsequent virologic or immunologic response to the salvage regimen was seen in this convincing study. The protocol-mandated 4-month treatment interruption prior to resuming HAART could in theory have been too long and was not individualized to the unique evolution of each participant’s virus. However, if these explanations were true then one would expect that a subset of patients should have gained some benefit. Yet, subset analyses did not indicate benefit to any group of patients.

The CD4+ T-cell count–guided strategy hinges on the assumption that we can accurately predict the risk of HIV-related morbidity and mortality based on the serial quantitation of CD4+ T-cells. Our comfort level with HAART’s ability to suppress almost any level of viremia contributed to this shift in emphasis (re-emphasis, really) toward the immune system and away from the effects of unsuppressed viremia.

It is important to note that the results of the 4 trials presented at CROI do differ based on the CD4+ T-cell threshold for restarting HAART. Two of the trials (STACCATO and ACTG 5170) incorporated a higher threshold for reinitiating HAART (< 350 cells/mm3 vs < 250 cells/mm3), and these trials reported no increased risk of death but did report more clinical events in patients who underwent treatment interruption compared with those receiving continuous therapy. It may be tempting to think that this higher threshold made the difference in assuring success of these interruption trials. However, the overwhelming weight of data from the SMART and Trivacan trials strike a resounding blow on that final nail. With hindsight, the flaw in the hypothesis for these studies was the underestimation of the deleterious effects of unsuppressed viremia. In both the SMART and Trivacan trials, the primary causes of death and morbidity were previously well-described HIV-related opportunistic infections and malignancies. It is also remarkable that a higher risk of (presumably) non-HIV–related causes of death and morbidity such as cardiovascular, hepatic, and renal disease occurred among participants on treatment interruptions in both ACTG 5170 and SMART. Is this a coincidence? Or are these diseases in some way related to the often hypothesized but incompletely understood immune activation associated with unchecked HIV infection? Perhaps these studies should best be viewed as a wake-up call to focus more of our HIV pathogenesis research efforts on this viral-induced source of inflammation.

One of the most striking results from the SMART trial was an analysis of the relative risk of disease progression or death stratified according to level of baseline viremia. If a participant’s viral load was previously suppressed to ≤ 400 copies/mL before stopping antiretrovirals, the treatment interruption strategy yielded a 3.8 relative risk for morbidity and mortality compared with 1.1 for a participant with a baseline viral load > 400 copies/mL. In other words, the relative risk associated with treatment interruption was greatest in those patients with viral suppression at baseline, and there was little evidence of increased risk in those without previous viral suppression. This lends weight to the theory that it is the presence of viremia per se that is clinically deleterious. Perhaps this also explains the seemingly nonintuitive lack of correlation between nadir CD4+ T-cell count and relative risk of disease progression or death: Viremia appears to be harmful regardless of the level of previous CD4+ cell depletion.

The CD4+ cell count–guided strategy trials have refreshed our appreciation of the life-saving value of antiretroviral therapy. In doing so, they have also stimulated us to ask new questions regarding the multifaceted effects that HIV infection has on the human body—beyond simply a chronic viral infection inducing immunosuppression. Truly, this virus continues to reveal more aspects of its diabolical nature to us.

References
1. El-Sadr W, Neaton J, for the SMART Study Investigators. Episodic CD4-guided use of antiretroviral therapy is inferior to continuous therapy: results of the SMART study. Program and abstracts of the 13th Conference on Retroviruses and Opportunistic Infections; February 5-8, 2006; Denver, Colorado. Abstract 106LB.

2. Danel C, Moh R, Sorho S, et al. The CD4-guided strategy arm stopped in a randomized structured treatment interruption trial in West-African adults: ANRS 1269 Trivacan trial. Program and abstracts of the 13th Conference on Retroviruses and Opportunistic Infections; February 5-8, 2006; Denver, Colorado. Abstract 105LB.

3. Skiest D, Havlir D, Coombs R, et al, for the ACTG 5170 Team. Predictors of HIV disease progression in patients who stop ART with CD4 cell counts > 350 cells/mm3. Program and abstracts of the 13th Conference on Retroviruses and Opportunistic Infections; February 5-8, 2006; Denver, Colorado. Abstract 101.

4. Ananworanich J, Gayet-Ageron A, Le Braz M, et al. CD4-guided scheduled treatments interruptions compared to continuous therapy: results of the Staccato trial. Program and abstracts of the 13th Conference on Retroviruses and Opportunistic Infections; February 5-8, 2006; Denver, Colorado. Abstract 102.

5. Fagard C, Oxenius A, Gunthard H et al. A prospective trial of structured treatment interruptions in human immunodeficiency virus infection. Arch Intern Med. 2003;163:1220-1226.

6. Dybul M, Nies-Kraske E, Daucher, M et al. Long-cycle structured intermittent versus continuous highly active antiretroviral therapy for the treatment of chronic infection with human immunodeficiency virus: effects on drug toxicity and on immunologic and virologic parameters. J Infect Dis. 2003;188:388-396.

7. Powers AE, Marden SF, McConnell R, et al. Effect of long-cycle structured intermittent versus continuous HAART on quality of life in patients with chronic HIV infection. AIDS. 2006;20:837-845.

8. Rosenberg ES, Altfeld M, Poon SH, et al. Immune control of HIV-1 after early treatment of acute infection. Nature. 2000;407:523-526.

9. Lawrence J, Mayers, DL, Hullsiek KH, et al. Structured treatment interruption in patients with multidrug-resistant human immunodeficiency virus. N Engl J Med. 2003;349:837-846.

(for clickable links contained within the original online article, please click here

Ann


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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline whizzer

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Re: HAART HOLIDAY = Lunacy?
« Reply #12 on: June 11, 2006, 08:23:32 pm »
Thanks for posting that article Ann.  I read it yesterday at Clinical Care Options but couldn't figure out how to post here. 

The viremia is the problem, and it must remain the focus of treatment.  The idea of a treatment holiday has great appeal, but it's been shown several times now to be, in general, a dangerous path to tread.  There are exceptions, of course, but I sure wouldn't want to take the chance.

I've made a devil's bargain with the meds - we all have.  They keep us well, and we remain their slave.  Always remember that, however inconvenient and, at times, uncomfortable they are to take, it is the virus that is the enemy, not the meds.

Maybe it's time for an update of Faust.  Who wrote that anyway?  Was it Goerthe?  I can't remember.

-Whizzer
(who named his pill box is named Mephistophiles)

Offline jack

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Re: HAART HOLIDAY = Lunacy?
« Reply #13 on: June 12, 2006, 07:22:20 am »
I took a three year drug holiday around or just before 2000. My ts were mid 300s when I started and stayed between 320 and 380 for 34 months. My vl bounced between 15000 and 75000 till the 34 month. In the 36 month my ts dropped to 280 and my vl went from 75000 to a mill. I started treatment again that day. I am at 220 today.

Offline allopathicholistic

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Re: HAART HOLIDAY = Lunacy?
« Reply #14 on: June 12, 2006, 08:02:23 am »
jack, i hope you rise above 400 ... thanks for being so specific in your post  :)

Offline boylikertampa

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Re: HAART HOLIDAY = Lunacy?
« Reply #15 on: June 12, 2006, 10:04:31 am »
I, too, have wondered about the "holiday".  My mantra from the day I was diagnosed has been "Hit the virus hard"...I also wanted and was able to hit it early.  Have been on meds for 5 1/2 years, my t's remain now around 900, and remain undetectable.  So I am content to continue meds knowing they are keeping the virus from roaming unchallenged through my body.

Offline Shawn Decker

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Re: HAART HOLIDAY = Lunacy?
« Reply #16 on: June 12, 2006, 02:44:40 pm »
It's all so tricky.  I've seen both sides, the pluses and minuses, of STIs.

This summer, I'm more than likely going to return to 7/7 treatment.  Last year, when my numbers went haywire, it was because I'd been off my meds for 2 months.  But when I was on 7/7 for about two and a half years (from 2003-2005), my CD4 count initially rose, then leveled off around 450 while the VL remained undetectable even at the end of a week off meds.  (Was on sustiva and combivir, and sustiva tends to hang around in the system longer.) 

I got in trouble when I got greedy and, as the side effects mounted, I wanted an all-out break, thinking that checking labs every 3-4 weeks would do the trick and keep tabs on the virus.

I've gotta say, the side effects were much easier to swallow with a week's break from meds.  Of course, if I do this I'll be keeping tabs and tracking the results in my blog. 
Shawn 

Offline gemini20

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Re: HAART HOLIDAY = Lunacy?
« Reply #17 on: June 21, 2006, 02:18:42 pm »
In the fifteen years since I've been diagnosed I've only chosen to treat for short periods of time, preferring to spend more time off treatment than on it - it seems to have worked for me, although I recognise that perhaps my choice won't be acceptable to many others.

I initially went on treatment in 1999 due to falling t-cells and only lasted 4 months before stopping, I remained off all treatment until April 2004 when I resumed only because my t-cells were around 140.

Second time around I stayed on for 18 months by which time CD4 count had reached 474 and have been off all meds since October 2005, so eight months and counting. Thankfully my doctor fully supports my choice in the way I choose to treat my HIV. He monitors me closely and always provides advice but I'm happier to stay off meds and would only consider restarting if I became unwell.

Current CD4 count is 222 (15.7%) and viral load c.35,400, no health problems whatsoever with these numbers.

Best of luck with the decision you make,

Emma

Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline allopathicholistic

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Re: HAART HOLIDAY = Lunacy?
« Reply #18 on: June 21, 2006, 03:50:22 pm »
Emma, thank you for being so open on this.

Offline jkinatl2

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Re: HAART HOLIDAY = Lunacy?
« Reply #19 on: June 21, 2006, 04:03:32 pm »
Emma, we have had VERY similar treatment histories. Only you seem to have known what you were doing at the time :) Me, I started and stopped for reasons ranging from tolerance issues to side effects to resistance to, well, just getting tired of the stuff.

Been off meds since October, or thereabouts.

Hate meds.

Hate HIV.

can't stop HIV.

Can stop the meds.

Both give me the runs.

Both exascerbate anemia.

When they make meds I can take, I will take em.

This is not giving up, or suicide, or surrender. It's stopping one of two evils that mess up my body. And it's not like I didn't give those meds a shot. I've been on almost everything out there since 1994.

Was my decision wise? I dunno. No, probably. But it's mine. And I own it. And I am free to rethink, whenever.

I sometimes make impulsive choices, sure. Going to Six Flags Sunday and forgetting to put on sunscreen was one, and boy am I paying for that.

Posting a cuss filled rant on another thread was another.

The meds thing? I consider a decade of attempts more than coincidence or circumstance. And say what you want, I am alive, and as healthy as I was on the meds. Should the latter situation change, I am free to return to the pharmaceutical industry with tin cup in hand.

For what my experience is worth.

"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 gemini20

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Re: HAART HOLIDAY = Lunacy?
« Reply #20 on: June 21, 2006, 04:41:03 pm »
Not really sure I knew what I was doing at the time! But just went with my gut instincts on both occasions and that was to stop.

But the door is always open to start again and that gives me choices which is all I can ask for.

I remember when I was diagnosed back in 1991 being told I might live 8-10 years, so didn't expect anything more. Once I hit my 10th anniversary (September 11th 2001!) I told myself that this was now bonus time and to live life to the full - great friends, a lot of attitude and sheer bloodymindedness seems to work for me now.

Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline jkinatl2

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Re: HAART HOLIDAY = Lunacy?
« Reply #21 on: June 21, 2006, 04:46:40 pm »
<< Once I hit my 10th anniversary (September 11th 2001!) I told myself that this was now bonus time and to live life to the full - great friends, a lot of attitude and sheer bloodymindedness seems to work for me now.
>>

Omigod, I have met my female counterpart :)

"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 Dachshund

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Re: HAART HOLIDAY = Lunacy?
« Reply #22 on: June 21, 2006, 05:49:22 pm »
Jonathan you may have posted the answer to my question and I apologize if I missed it. My question is do you still have regular bloodwork done and what does your Dr. think? I am very interested in 7/7 treatment or even a holiday. The old bod seems to be suggesting the latter.

Thanks for your input.

Hal

Offline jkinatl2

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Re: HAART HOLIDAY = Lunacy?
« Reply #23 on: June 21, 2006, 06:34:55 pm »
I have bloodwork done about every month or so. My doctor, of course, wants me back on meds. But he is appreciative of my honesty and my integrity. I trust him, and he trusts me. Its a really great relationship.

I dont know anything about 7/7 treatment firsthand, having never tried it. :)

"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 J.R.E.

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Re: HAART HOLIDAY = Lunacy?
« Reply #24 on: June 21, 2006, 08:34:23 pm »
Hi there,

I sure would like to be able to take a holiday, but was informed by the doctor, the same day I started meds, that it would be most unlikely. But somewhere down the road, I probably will have to take a structured break, depending on how my insides are doing.


Ray
Current Meds ; Viramune / Epzicom Eliquis, Diltiazem. Pravastatin 80mg, Ezetimibe. UPDATED 2/18/24
 Tested positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of Oct 2nd, 2023, Viral load Undetectable.
CD 4 @676 /  CD4 % @ 18 %
Lymphocytes,absolute-3815 (within range)


72 YEARS YOUNG

Offline allopathicholistic

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Re: HAART HOLIDAY = Lunacy?
« Reply #25 on: June 24, 2006, 08:46:41 pm »
I've gotta say, the side effects were much easier to swallow with a week's break from meds.  Of course, if I do this I'll be keeping tabs and tracking the results in my blog. 
Shawn 

Thanks Shawn. I see from your blog you made the decision to do the 7/7 thing. What were your doctor's words of wisdom on that?

A little birdie is asking me why I'd want to "mess with success" ... and I can't answer.

I'm terrified the answer is stongly related to ego. Maybe I need a shrink grrrrrrr  :-\

Offline allopathicholistic

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Re: HAART HOLIDAY = Lunacy?
« Reply #26 on: June 24, 2006, 08:55:09 pm »
Oh, I found the NuShawn thread  :P

Ignore the above (except the part about me being a dumbfuck)

Offline lydgate

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Re: HAART HOLIDAY = Lunacy?
« Reply #27 on: June 24, 2006, 09:44:50 pm »
I've known only one friend who's died of AIDS. He never took the meds. Never, not one pill (though a lot of cocaine and Ex). He was infected late-90s; he died in 2004. I was SO angry at him at the time; no amount of reason would work with him. "It's my body, it's my decision, I choose the poisons which go in" he would say. (Like Melville's autistic scrivener, Bartleby, who says, "I prefer not to.") Of course, all his friends thought he was a lunatic, that he was hell-bent on suicide, that he had undiagnosed depression (I don't think that was the case), that the drugs were a palliative (well, duh). He still got blood-work done for reasons I couldn't/can't fathom. The week before he died he had a CD4 count of 18 and VL >750,000.

This ws a gay man, mid-30s, independently wealthy, a film-maker, with "connections" galore from Manhattan to Madagascar. Money or access was not the problem.

I still don't fully understand his decision not to take ARVs. But it's taken me two years to accept and "forgive" him, in some measure. Two years and my testing positive. I thought R was a suicidal lunatic for many years; I don't think so any more.

Just thought of what good ol' Benjamin Franklin said (yeah, I'm a pretentious twat who likes throwing in literary references, please don't despise me) -- 9 out of 10 men are suicides, in one way or another.

I hate HIV. I'm scared of the meds. I'm hoping that with my numbers I can delay them for at least a decade. Now, having just hoped that and articulated it online, I fear I've jinxed it and that my next labs are going to be terrible. ::)

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline jack

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Re: HAART HOLIDAY = Lunacy?
« Reply #28 on: June 25, 2006, 04:54:16 pm »
jonathan,what are your numbers? I have been so sick lately I am thinking of stopping again. I have spent the last week throwing up or and trying not to throw up. Why? This makes no sense.

Offline jkinatl2

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Re: HAART HOLIDAY = Lunacy?
« Reply #29 on: June 25, 2006, 04:57:27 pm »
Heya, I honestly dont know my current numbers. I am due for bloodwork sometime in the next few weeks though. Last time I checked, my T cells were about 140 and my VL was 35, 000.

I think my percentage was 12.

"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

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Offline jack

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Re: HAART HOLIDAY = Lunacy?
« Reply #30 on: June 25, 2006, 06:52:12 pm »
was is your strategy? Have you decided at what will be the catylist to start drugs again? Just wondering. I am quit once for three years but vl hit a million in third year, but I sure felt wonderful for three years.
I just get tired of hearing bullshit about giving up or hanging in there. I have spoken those lines to others on this MB, and I wish I hadn't. Its easy to forget how bad it is to be sick all day when you arent.

Offline Smoothstone

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Re: HAART HOLIDAY = Lunacy?
« Reply #31 on: September 07, 2006, 11:11:15 pm »
I have requested drug using behaviors of the SMART Study participants. A small number of adverse events stopped the trial.  There were  6 references to "HIV wasting" in the list of adverse events . I asked was that crack related wasting?  crystal related wasting? or just plain HIV related wasting?  Over the past 2 decades I have encountered many examples of crack related wasting and crystal related wasting where the erroneous assumption was made that the persons had "HIV wasting".  They turned out HIV negative but visibly looked like they had HIV wasting.  There is a reference study which is very important in analysing the SMART Study results. That study looked at drug using PWAs....everyone in the study was a drug user. They compared those drug users who stayed adherent while using drugs with those who had less than optimal adherence...like during the first of the month ritual of partying....Results: those partiers with good  adherence did fine health wise in terms of CD4 maintenance and health despite their drug use..but those who partied and were only randomly adherent had CD4 decline and health problems..infections, illness, etc.  In the SMART Study some drug users may have been randomized into stopping treatment...with a PREDICTABLE result that they would see CD4 decline and illness...no medication to keep viral replication in check.

One SMART Study report referenced  "IV drug use" but there was no mention of non IV drug use...like in crack use and some crystal use...My hypothesis is that drug using behaviors...including and perhaps especially non IV drug use, especially crack and crystal use...while off treatment results in predictable CD4 decline due to crack feuling HIV replication...there is a published UCLA study showing cocaine use feuling HIV replication in a mice study...the mice injected with cocaine saw 200 times greater HIV viral replication compared to the mice getting saline injections...Seems mandatory that participant drug using behaviors be analyzed, and that the drug using behaviors encompass  both IV drug use, but also non IV drug use to insure that we examine crack and non IV crystal use. It would be helpful if various constituency groups that particpated request the drug using behaviors be analyzed and if not currently examined...that the protocol be amended to look at these potentially significant behaviors.

Offline sfpvguy41

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Re: HAART HOLIDAY = Lunacy?
« Reply #32 on: September 09, 2006, 12:26:22 am »
From what I've been reading, the ability to stop meds for a while is strongly related to your "nadir" - the lowest count of Tcells you ever had.  If that was never below 350 (according to the European study) and you never let it get below that when you're on holiday, it was reported to be safer.  So if, for example you're doing great at 700 CD4s, but your nadir was 75, it's not a good idea to take a holiday since you can fall to that pretty quickly or worse.  If your nadir was 500, you could take a holiday but get back on meds before you hit 350.

I'm wondering if that reading of the research maps to anyone's experience?  Is there anyone here who has taken a holiday with a high nadir and had big problems or vice versa?

Robert (anxiously awaiting his latest lab results)
Hugs to all...
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline SirPrize

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Re: HAART HOLIDAY = Lunacy?
« Reply #33 on: September 09, 2006, 02:34:35 pm »
Been + for more than 23 years now.  My first T-count was around 310.  I was initially treated in 90 with monotherapy AZT but was not able to tolerate the drug and stopped in early 91.  Went for 2 1/2 years with no medication(s).  Around 93, my ID Doc started me on Videx and T-count was around 280.  After about 9 months (again monotherapy) I began developing signs of pancreatitis and was taken off the drug.  Sometime in 1996, after combo therapy became the standard, I was started on d4t and 3tc.  In 1999, the T-count dropped to 189 but bounced back above 230.  When Sustiva came to market in late 2000 I added that drug to my regimen and T-count began to rise back to high 200's.  Since that time the T-count has bounced between 250-350 with undetectable VL's.  I have been on that regimen until May of this year when I switched to Sustiva + Truvada because the Zerit had started to cause Lipoatrophy.  My last T-count is now around 350 and VL undetectable.

In summary, I have had several interruptions to treatment but with what is known today, unless you are suffering from some "severe" side effect of the medications, I would advise you to adhere to treatment.  I do, however, cheat from time to time, and take an occasional Sunday off!
Due to current economic conditions, the light at the end of the tunnel has been temporarily turned off!

Offline john

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Re: HAART HOLIDAY = Lunacy?
« Reply #34 on: September 11, 2006, 10:43:24 am »

Look I am still fairly new to this thing and I cant seem to get above 200 t, but from what I have read a therapeutic vaccine may be available by 2010. If you can tolerate the meds I would wait and see what happens. Unfortunately I have read the vaccine only seems to help those with only >350 t. Don't take a chance and end up where I am.

                                 Jon be good
Jon be good

Offline antibody

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Re: HAART HOLIDAY = Lunacy?
« Reply #35 on: November 24, 2006, 05:28:56 pm »
the meds are not as tolerable as they make them out to be or why would everyone want to take a holiday?
it's true the virus is a killer but these meds are pretty damn toxic too!
Timbuk      <50/ 794  CD4 10/06 
                 <50/ 1096 CD4 3/07
                 <40/ 1854 CD4 4/09

Started Atripla  7/14/06
Switched to boosted Reyataz Truvada 3/28/07

*Ask me about Medical Marijuana and how it can help you!*

Offline allopathicholistic

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Re: HAART HOLIDAY = Lunacy?
« Reply #36 on: November 25, 2006, 10:23:39 am »
the meds are not as tolerable as they make them out to be or why would everyone want to take a holiday?
it's true the virus is a killer but these meds are pretty damn toxic too!

yup it does seem like "love-hate" doesn't it? well, let's just pray better meds come 'round soon, or y'know, the cure!  8)

Offline libvet

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Re: HAART HOLIDAY = Lunacy?
« Reply #37 on: November 25, 2006, 05:27:43 pm »
Ultimately, it is your choice.

For what it is worth, I think the risk is too great.   I've been on meds for almost 7 years now and the only change I made was switching out the combivir for truvada and that was because I wanted to go to once daily dosing.

My regimen has worked for me and I've been undetectable for the entire time after starting at a ridiculously low cd4 count (22) and a pretty high viral load.

I just don't see any benefit in messing something that has worked very well.

Offline NightmareHall

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Re: HAART HOLIDAY = Lunacy?
« Reply #38 on: November 25, 2006, 10:41:00 pm »
*
« Last Edit: December 14, 2006, 11:10:33 am by NightmareHall »

Offline allopathicholistic

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NEW ENGLAND JOURNAL OF MEDICINE
« Reply #39 on: November 30, 2006, 12:37:41 am »
NEW ENGLAND JOURNAL OF MEDICINE to issue a report on hiv poz STI's tomorrow Thursday, November 30, 2006

Look for it!

Offline allopathicholistic

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CD4+ Count–Guided Interruption of Antiretroviral Treatment
« Reply #40 on: November 30, 2006, 01:23:17 pm »
Hot off the press (New England Journal of Medicine):

CD4+ Count–Guided Interruption of Antiretroviral Treatment
http://content.nejm.org/cgi/content/short/355/22/2283


Offline chadnla

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Re: HAART HOLIDAY = Lunacy?
« Reply #41 on: December 04, 2006, 08:43:28 pm »
I've thought about this from day 1 of my diagnosis in 2002  :'(

had CD4 of 302 and VL >58,000, but doc didnt recommend meds until the following month at CD4 = 283 and VL>75,000  :'(

i look back and think I may have been put on them too soon so i have always thought about taking a holiday   >:(

but the drugs are working and now have CD4 of 683 and viral load is undetectable  :D

i guess the thing that scares me and for those of you who do regular interruption (i.e. shawn and his 7/7) is that I thought the periodic interruptions were bad and allow the virus to become resistant easier.  also what led you to a 7/7 decision (or anyone else who can comment) because I doubt many docs will ethically recommend that?  was it research that you read?   ???

just curious. i've always approached as if wanting to give my body a 2nd chance to fight it off...like to prove something (guess it's human nature). but when i think of drug resistance, i scare myself back into taking the dose.   :-\

i guess my next holiday will be to Peru for vacation.  anyone wanna go?   :o
"I do not believe in a fate that will fall on us no matter what we do. I do believe in a fate that will fall on us if we do nothing."

Offline lydgate

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Re: HAART HOLIDAY = Lunacy?
« Reply #42 on: January 03, 2007, 03:28:51 am »
Peru? I am SO there! Tell you what, you buy the tickets, and I'll make it up to you in other ways. Machu Picchu? You won't want to leave the hotel room.  ;)

In all seriousness, recent research suggests that starting at higher T-cell counts is a better treatment strategy. See this post:

http://forums.poz.com/index.php?topic=2640.0

And your response of course has been great.

So: two to Lima?  ;D

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline bimazek

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Re: HAART HOLIDAY = Lunacy?
« Reply #43 on: January 11, 2007, 12:22:26 am »
Treatment Interruptions

Please share your personal experiences with treatment interruptions how long were you off meds, how long on them before, how were numbers
before during after, the word in support groups is treatment interruptions are ok for x months if your t cells get over 500
better yet over 700 and then go back on if the tcells drop to 350 or below, is there anyone who has had good or bad results
GOING ON A Treatment Interruption?



Structured Treatment Interruptions
Data from SMART, the largest trial of structured treatment interruptions (STI) conducted to date, were reported earlier this year at CROI.[5] The premature discontinuation of this study has been a major obstacle to enthusiasm around further study of STIs in the context of HIV. The results of 2 other trials, Trivacan[6] and DART,[7] have confirmed the SMART results, with an excess of morbidity and mortality in STI arms compared with control arms. In contrast, the results of the Staccato and Windows[8,9] studies have shown significant cost savings using STI without deleterious adverse outcomes, as shown in Table 2.
Table 2. Outcome in Major Studies Assessing Structured Treatment Interruptions (STI)
    AIDS & Deaths per 100 Patient-Years
       
(5472)   SMART
(326)   rivacan
(813)   DART
(430)   Staccato
(390)  Windows
STI arm      3.1   17.6   8.3   0.2   0.4
Control arm   1.4   6.7   3.2   0.4   0
http://www.medscape.com/viewarticle/549595
These apparent contradictory results could be somewhat reconciled if we consider that short (4- to 6-month) treatment interruptions may be safe only in patients with CD4+ cell counts > 400-500 cells/mcL.[9] Also of note, one of the indirect messages of the SMART trial data is that plasma HIV-RNA does matter clinically, because AIDS/death events in the trial were more frequent in patients off therapy across all different CD4 strata.



my laymans interpretation... short interupts have low danger of adverse effects, long interupts have some danger of adverse effects but haart does such a good job that the some danger is very very low??
please comment on your experiences with treatment interupts?Huh?
how many have you had how long?

hussy_24 wrote, "seroconverters who were only infected recently (say ~1yr) who go on meds quickly can come off them
in about 2 years if their bloods are good and as explained above can go for 6-7yrs+ off treatment.
i'm in the UK, and my nurse is organising for me to be referred to mortimer market clinic in London
as she said they are more experienced in dealing with this particular type of seroconverter
(other reasons for referral-> the visiting doctor also is at mortimer, nhs funding problems,
ease for me to travel to mortimer clinic)."

i do not fall into the 1 year group as you do, but have been exposed 2 years ago, but 500tcells and med vl of 22k.  i wish i could ask your nurse what she thought, i would go on meds now if i thought i could go off of them for 5 years, seems weird because the clinical practice is so different from city to city,
what are your numbers, i am planning to wait till i get to 350tcells or vl spikes up, what are your thoughts

one big question is, we know that a small to medium pc of hiv are suffering with alcolohism or drug use or even abuse, say up to 20% but did these staccato and other Structured Treatment Interruptions take this into account.
in other words if the adverse effects were seen mostly or only in  those suffering with alcolohism or drug use or even drug abuse perhaps the  Structured Treatment Interruptions are safer than the stats show
it just seems unscientific to group everone together, what about by age, or alcolohism or drug use or even abuse etc

 


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