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Author Topic: Unconventional treatment and adherence strategies  (Read 15443 times)

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Offline Matty the Damned

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Re: Unconventional treatment and adherence strategies
« Reply #50 on: July 17, 2011, 11:02:42 PM »
I don't think anyone is scolding anyone.  When you post on an open internet message board you have to expect there will be people who don't agree.  Since this board is also a place where newly diagnpsed (or not so newly diagnosed) people come for information and to learn, to let missinformation go by under the guise of "live and let live" isnt doing anyone a favor. 

Quite so Bugsy. :)

MtD

Offline Zohar

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Re: Unconventional treatment and adherence strategies
« Reply #51 on: July 17, 2011, 11:22:15 PM »
I don't think anyone is scolding anyone.  When you post on an open internet message board you have to expect there will be people who don't agree.  Since this board is also a place where newly diagnpsed (or not so newly diagnosed) people come for information and to learn, to let missinformation go by under the guise of "live and let live" isnt doing anyone a favor. 

I would disagree and I think there has been some scolding taking place here, especially in some of the later posts; the words 'stupid', 'foolhardy' 'voodoo science' have all been thrown around in a way which reads as belittling. This board is as much about allowing people to share experiences. They may be experiences you don't agree with, but that doesn't mean they shouldn't be discussed.

It would be a far greater concern if people were actively advocating home experiments with their treatments, but that isn't what is happening here.  It's also worth bearing in mind that as long as people are being monitored, then unsuppressed viral loads, if they occur, should be detected which would then be addressed by the doctor.

My own experience has shown that sometimes a particular doctor doesn't always know best and the quality of my life has improved immeasurably since taking matters into my own hands - a decision which was later supported by a highly experienced HIV consultant. The point here is that these circumstances were specific to me and, convenient though it would be, a 'one size fits all' approach doesn't always yield the best outcome.

''Poor is the man whose pleasures depend on the permission of another.''

Offline Matty the Damned

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Re: Unconventional treatment and adherence strategies
« Reply #52 on: July 18, 2011, 12:05:51 AM »
I would disagree and I think there has been some scolding taking place here, especially in some of the later posts; the words 'stupid', 'foolhardy' 'voodoo science' have all been thrown around in a way which reads as belittling. This board is as much about allowing people to share experiences. They may be experiences you don't agree with, but that doesn't mean they shouldn't be discussed.

It would be a far greater concern if people were actively advocating home experiments with their treatments, but that isn't what is happening here.  It's also worth bearing in mind that as long as people are being monitored, then unsuppressed viral loads, if they occur, should be detected which would then be addressed by the doctor.

My own experience has shown that sometimes a particular doctor doesn't always know best and the quality of my life has improved immeasurably since taking matters into my own hands - a decision which was later supported by a highly experienced HIV consultant. The point here is that these circumstances were specific to me and, convenient though it would be, a 'one size fits all' approach doesn't always yield the best outcome.

Varying slightly from the strict letter of the medicine bottle label is not always a problem. My combination is meant to be twice a day, but I'm far too scatter brained to manage that so I take all my pills all at once at night time.

My prescriber says this is ok. And therein lies the point, if folks need to test the boundaries a bit well OK. But make sure you discuss it with your doctor first. If your doctor says you shouldn't well you're still free to chart your own course but don't be surprised if it all goes horribly wrong.

Moreover, such intrepid pioneers shouldn't come snivelling to us either when their combos fail because they knew better than their doctor(s). A sympathetic response will likely not be forthcoming.

You also miss the point of an internet forum, a point (suprisingly) which Bugsy gets. It's about a free and robust exchange of views. You've been here for all of 136 posts and a little more than a year and you seem to think you know what is the point of these forums.

Clearly, you do not.

You cannot on the one hand spout off about people being able to discuss their experiences but on the other bitch about the use of words you don't care for. Well, you can but you won't be taken seriously when you do.

The reality is that some of the views in this thread are stupid, foolhardy and rendolent of voodoo science.

So harden up, Princess. :)

MtD

Offline Zohar

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Re: Unconventional treatment and adherence strategies
« Reply #53 on: July 18, 2011, 06:11:18 AM »
''Moreover, such intrepid pioneers shouldn't come snivelling to us either when their combos fail because
they knew better than their doctor(s). A sympathetic response will likely not be forthcoming.''


Please correct me if I'm wrong but I haven't seen anyone come 'snivelling' in this thread looking for sympathy because their combo has failed. And yet some posters here are acting as if that has already happened and lacing their responses with what they consider to be the requisite level of hostility, which is both uncalled for (re-read the opening post for guidance) and unwarranted.

I don't post too frequently on the forums but I have been following them for several years, which amply qualifies me to hold a view about their purpose, and that shouldn't be to patronise or attack.
« Last Edit: July 18, 2011, 08:33:12 AM by Zohar »
''Poor is the man whose pleasures depend on the permission of another.''

Offline james3000

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Re: Unconventional treatment and adherence strategies
« Reply #54 on: July 18, 2011, 07:45:55 AM »
Other words like ' My Dr doesn't know ', ' I believe' , and a study of 60 patients is somehow a proof that this self experiment is working.
I wonder how many experiments were conducted to find the overall correct dose for most people ?
1.5 years does not seem like a very long time to be on a combo and great it is working well.
What is the benefit of skipping a dose ?
Suppose it does go wrong and cost is a factor ? $2500 a month vs $50,000 if the drug becomes resistance.
I am sorry if I used the word Voodoo science but misleading your DR, skipping doses, saying it is 20% less toxic and basing your theory on a 60 patient study is Just that.
The results of certain drug blood level tests can take up to a month it is a scientific fact that HIV replicates at an amazing rate what is to be gained by this risk ?


Offline Ann

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Re: Unconventional treatment and adherence strategies
« Reply #55 on: July 18, 2011, 10:13:03 AM »

the words 'stupid', 'foolhardy' 'voodoo science' have all been thrown around


These words are referring to behaviours. I would want someone to tell me if I was doing something that was stupid and quite possibly detrimental. However, if they told me that I was an asshole (and I am sometimes, who isn't?) along with it, then and only then would I take offence. Please don't try to take people's well-meaning posts and make them into something they're not.

''Moreover, such intrepid pioneers shouldn't come snivelling to us either when their combos fail because
they knew better than their doctor(s). A sympathetic response will likely not be forthcoming.''


Please correct me if I'm wrong but I haven't seen anyone come 'snivelling' in this thread looking for sympathy because their combo has failed. And yet some posters here are acting as if that has already happened and lacing their responses with what they consider to be the requisite level of hostility, which is both uncalled for (re-read the opening post for guidance) and unwarranted.


Nobody was "acting as if that has already happened". He was talking about the future. Again, please don't try to take people's well-meaning posts and make them into something they're not.




My bf started taking Sustiva and Combivir in 2001. He would wake the whole house (he runs a small boarding house with up to four semi-permanent residents) screaming with the nightmares Sustiva gave him. His behaviour became increasingly erratic.

His doctor used Therapeutic Drug Monitoring (TDM) on him, where they measured the levels of Sustiva in his blood stream. It was concluded that his body processed Sustiva too slowly and he therefore had very high levels. They dropped his dose from the standard 600mgs to 400mgs.

The nightmares and erratic behaviour continued. This is back when Sustiva was considered the "holy grail" of hiv meds, so rather than switch him out for something else, they did more TDM. The levels of Sustiva were still far too high. They dropped him down to 200mgs and the nightmares finally stopped. His behaviour is still erratic, but hey, maybe that's just him. ;) ;D

The point is, not everyone's bodies process some of these drugs the same as everyone else. While there are alternatives like switching meds or lowering doses, it should always be done in conjunction with a doctor. If your doctor refuses to help, rather than "taking matters into your own hands" as one member here has done, FIND ANOTHER DOCTOR. Hiv drug resistance is nothing to mess around with - just ask some of our LTS who where facing death until another drug class came out.

BTW, my bf is still on 200mgs of Sustiva, once daily. His VL has remained UD since about three or four months into initiating treatment in 2001. When Truvada came out, they switched him to that instead of the Combivir (to get him off AZT). He initially took the Truvada at night with the Sustiva like he did with the Combivir, but he found he was waking up feeling very groggy and unfit to drive - something that never happened before, even with the super-high levels of Sustiva. He switched the Truvada to an AM dose and hasn't had a problem since. He did this on advice from his doctor.

« Last Edit: July 18, 2011, 10:18:11 AM by Ann »
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Offline newt

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Re: Unconventional treatment and adherence strategies
« Reply #56 on: July 18, 2011, 04:35:08 PM »
Since dose finding studies are done on a very few people, and alarms about resistance mainly comes from days of sequential monotherapy, it is likely, more than likely, a fair proportion will needs less than the full regulation 3 drugs from 2 classes after the first few months of treatment. Alas not more than 8/10 people as present data stands, if it is 8/10 people (studies have been small and generally excluded people with existing resistance) and not with NNRTIs or integrase inhibitors (so the right boosted PI basically).

Some people will be underdosed even on the fully monty (there's a very good paper on this and efavirenz and also on boosted atazanavir). Some will be overdosed even on low levels of particular drugs (as per Ann's post). It's a genetic thing.

Boosted darunavir as maintenance therapy seems fine to me with careful initial monitoring, as does FOTO on efavirenz for a fair proportion of people. But you need a back up. It would be terrible to fuck up your last strong regimen.

Unfortunately, FOTO is not less toxicity because the reason it works is the drugs stay at a steady state in your body for a long time, enough to cover a weekend, after a while of taking them.*

PIVOT is an important study on boosted PI maintenance therapy. I was involved in the design consultations, it's a very community-driven study, a real-world study, and has cost benefits for our socialised medicine NHS (three cheers) if it holds true. I would be on it but for the lumbar punctures. I note enrollment was kinda slow, but it got there in the end.

Next year I am going to discuss dropping 1 NRTI, tenofovir, from my combination. This will put me on boosted darunavir + FTC. But note, this is after several years of suppressed viral load, and I'll be back on the tenofovir if there's even a hint of a rise in viral load.

- matt


* this is nearly right, it's a bit more complicated

Edited for spelling
« Last Edit: July 18, 2011, 07:23:11 PM by newt »
"The object is to be a well patient, not a good patient"

Offline Assurbanipal

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Re: Unconventional treatment and adherence strategies
« Reply #57 on: July 18, 2011, 06:01:34 PM »
I am highly tempted to get out the pill cutter and go on once a day Prezista, starting about a month before a set of labs.  I don't mind twice a day dosing, or the need to have breakfast with the pills -- it is the need to always make sure I'm eating something with the evening pills that is inconvenient -- about once a month or so I just wind up taking the evening dose dry, because I forgot to take it with dinner, or I had a late lunch or...

I really like the reduced norvir dosing that would result too-- since it seems to be responsible for other problems.

I talked to the doctor about it last year, but she was worried I might have some low-level resistance from when I had a string of low but repeated viral loads on Kaletra.  Perhaps I'll see what she thinks of this strategy at my appointment coming up (but she tends to rein me in -- probably not a bad thing, but still...)

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 james3000

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Re: Unconventional treatment and adherence strategies
« Reply #58 on: July 18, 2011, 06:42:35 PM »
Does one need a four course meal when taking duranavir ?

Offline Miss Philicia

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Re: Unconventional treatment and adherence strategies
« Reply #59 on: July 18, 2011, 06:45:20 PM »
Does one need a four course meal when taking duranavir ?

No, of course not. The labeling says (clearly) "Take With Food" not "Take With Meal".
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: Unconventional treatment and adherence strategies
« Reply #60 on: July 18, 2011, 06:46:10 PM »
Some of you would have been a joy back in the days when you had to take 3 doses of meds, 2 with full meals and 1 on an empty stomach.
"Iíve slept with enough men to know that Iím not gay"

Offline james3000

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Re: Unconventional treatment and adherence strategies
« Reply #61 on: July 18, 2011, 06:58:55 PM »
Dear Matt,

I must say for myself I have become worried about the drug resistance I have.
I am hope that the next VL test and drug level test will be OK.
I have been 99% compliant with meds so I don't understand fully why they are not working.
I guess that is why I do not understand people being pissed with once day dosing .
with my meds now HIV and crazy meds I am on 16 pills a day one pill a day would be fantastic !!!
Or having to have a snack with a pill hey enjoy eating I know I do ;)

Offline james3000

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Re: Unconventional treatment and adherence strategies
« Reply #62 on: July 18, 2011, 07:07:41 PM »
Dear Miss P,

I was Just being Facetious !

Offline Zohar

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Re: Unconventional treatment and adherence strategies
« Reply #63 on: July 18, 2011, 07:21:16 PM »
Some of you would have been a joy back in the days when you had to take 3 doses of meds, 2 with full meals and 1 on an empty stomach.

It's all relative, I guess. ;)
''Poor is the man whose pleasures depend on the permission of another.''

Offline Miss Philicia

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Re: Unconventional treatment and adherence strategies
« Reply #64 on: July 18, 2011, 08:54:21 PM »
Relative to what, pray tell? Thinking you can get AIDS without the slightest of inconvenience?
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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Re: Unconventional treatment and adherence strategies
« Reply #65 on: July 18, 2011, 09:30:42 PM »
Relative to what, pray tell? Thinking you can get AIDS without the slightest of inconvenience?

I'd prefer to optimize my regimen. 

I can always fulfill any remaining quota of inconvenience by reading snarky posts.


Ah well, so much for revealing my deepest darkest meds fantasies here, MtD has posted a scientific study and I must swot up before the quiz.
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 james3000

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Re: Unconventional treatment and adherence strategies
« Reply #66 on: July 18, 2011, 10:24:01 PM »
Why get a pill cutter ? Is it that much bother to make a sandwich or snack ? or go out and get a donut?
There is nothing snarky about the comment. View it as your new normal.
Maybe think about taking your pill with breakfast and Dinner and cut down during the day ?

Offline Matty the Damned

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Re: Unconventional treatment and adherence strategies
« Reply #67 on: July 18, 2011, 11:15:36 PM »
Ah well, so much for revealing my deepest darkest meds fantasies here, MtD has posted a scientific study and I must swot up before the quiz.


Quite so. Penis Size 403 is a core subject and that quiz will constitute 25% of your final mark.

MtD

Offline Zohar

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Re: Unconventional treatment and adherence strategies
« Reply #68 on: July 19, 2011, 05:48:40 AM »
Relative to what, pray tell? Thinking you can get AIDS without the slightest of inconvenience?

Er, no. Not quite sure how you came to that conclusion.  ::)

I meant it's relative to one's own experiences of HIV drugs.
''Poor is the man whose pleasures depend on the permission of another.''

Offline Matts

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Re: Unconventional treatment and adherence strategies
« Reply #69 on: July 30, 2011, 05:22:47 PM »
I have a question about this FOTO study, maybe somebody has an answer.

Supposing I take my meds only 5 days a week and drop the dose at Friday and Saturday: How many latent viruses can "wake up" at one day? I know there are some billions infected cells in the body, but when do they start to reactivate after quitting meds?

My VL is under 50 for 1,5 years with Celsentri 150mg/ Prezista 600mg once a day
tivicay/kivexa

Offline Inchlingblue

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Re: Unconventional treatment and adherence strategies
« Reply #70 on: July 31, 2011, 10:16:52 AM »
I have a question about this FOTO study, maybe somebody has an answer.

Supposing I take my meds only 5 days a week and drop the dose at Friday and Saturday: How many latent viruses can "wake up" at one day? I know there are some billions infected cells in the body, but when do they start to reactivate after quitting meds?

My VL is under 50 for 1,5 years with Celsentri 150mg/ Prezista 600mg once a day

The FOTO study was done specifically with Atripla. When you stop meds they stay in your body a certain amount of time, based on their "half-life":

The duration of action of a drug is known as its half life. This is the period of time required for the concentration or amount of drug in the body to be reduced by one-half. We usually consider the half life of a drug in relation to the amount of the drug in plasma. A drugís plasma half-life depends on how quickly the drug is eliminated from the plasma. A drug molecule that leaves plasma may have any of several fates. It can be eliminated from the body, or it can be translocated to another body fluid compartment such as the intracellular fluid or it can be destroyed in the blood. The removal of a drug from the plasma is known as clearance and the distribution of the drug in the various body tissues is known as the volume of distribution. Both of these pharmacokinetic parameters are important in determining the half life of a drug.

Different drugs have different half-lifes. The virus will continue to be suppressed as long as there is enough of a concentration of drug in one's system.

LINK:

http://sonet.nottingham.ac.uk/rlos/bioproc/halflife/index.html

With FOTO it was determined that skipping two days of Atripla (for individuals who had been undetectable at least 6 months prior) was not harmful.

There are other factors that affect a drug's half-life, such as one's own metabolism, etc.

As far as the meds you are taking there have not been, to my knowledge, any studies done that were similar to FOTO.

Offline newt

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Re: Unconventional treatment and adherence strategies
« Reply #71 on: August 01, 2011, 08:15:45 AM »
Quote
Celsentri 150mg/ Prezista 600mg once a day

Plus some Norvir I hope? Like the previous poster said, FOTO is only for efavirenz based combos like Atripla. It won't work on your combo.

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

Offline Matts

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Re: Unconventional treatment and adherence strategies
« Reply #72 on: August 01, 2011, 08:58:17 AM »
Thank You Inchlingblue and Newt for the info. You are right, FOTO makes no sense with my combo (Celsentri, Prezista and norvir).
Sustiva has a half life of 40-50 hours; Celsentri and Prezista only 13-15 hours. So I dont wanna risk mutations.

thanks
tivicay/kivexa

Offline YaKaMein

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Re: Unconventional treatment and adherence strategies
« Reply #73 on: August 30, 2011, 11:21:54 PM »
Will be my last update to this post to say that I continue to sustain an undetectable VL <20 and will be staying with the modified FOTO in my adherence. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline bufguy

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Re: Unconventional treatment and adherence strategies
« Reply #74 on: January 30, 2012, 12:36:30 PM »
Just saw this post and had an interesting conversation with my Doctor about FOTO. He believes the outcomes in the study are valid and patients could possibly reduce their pill burden to 5 days a week if undetectable , especially with the long half life of the effavirenz component in Atripla.
He does not recommend it though because there would be little room for error.
He did tell me he has an older patient with kidney problems who takes his Atripla only 6 days a week. He feels that 1 day holiday lessens the tenofovir levels just a little that makes atripla just that much more forgiving.
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 Hellraiser

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Re: Unconventional treatment and adherence strategies
« Reply #75 on: February 01, 2012, 08:23:15 PM »
Just saw this post and had an interesting conversation with my Doctor about FOTO. He believes the outcomes in the study are valid and patients could possibly reduce their pill burden to 5 days a week if undetectable , especially with the long half life of the effavirenz component in Atripla.
He does not recommend it though because there would be little room for error.
He did tell me he has an older patient with kidney problems who takes his Atripla only 6 days a week. He feels that 1 day holiday lessens the tenofovir levels just a little that makes atripla just that much more forgiving.

I also only take it 6 days a week, I've been doing this for almost 5 months now.  When I get my blood results back in soon we'll see if I'm still UD

Offline mecch

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Re: Unconventional treatment and adherence strategies
« Reply #76 on: February 02, 2012, 05:28:06 AM »
People do this for different reasons?

Maybe financial?

Maybe psychological - just want some semblance of "control" over a obligatory regimen

Intellectual - believe that the drugs are poison or potentially poisonous to the body and want to limit potential damage?  have cns side effects and hope to reduce them through reduced drug levels?


ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Assurbanipal

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Re: Unconventional treatment and adherence strategies
« Reply #77 on: February 02, 2012, 07:39:44 AM »
I also only take it 6 days a week, I've been doing this for almost 5 months now.  When I get my blood results back in soon we'll see if I'm still UD

You know, there are far more fun ways to court death than failing to take your Bactrim while skipping doses of your Atripla.

You could take up motorcycle acrobatics or set up meetings with anonymous tricks on fetlife.

...just sayin
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 leatherman

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Re: Unconventional treatment and adherence strategies
« Reply #78 on: February 02, 2012, 10:33:00 AM »
People do this for different reasons?
there are two other schools of thought on this

1) current dosage guidelines may actually be too much for some individuals. Everyone is different with different body weights and different rates of metabolism. In the early days, they OD'ed us with AZT, so it's quite possible (without any theraputic monitoring) that many people are still being "overdosed" on medications today

2) once undetectable is reached and held for a period of time, it may take less levels of medication to maintain UD.
leatherman (aka mIkIE)


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

Offline Miss Philicia

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Re: Unconventional treatment and adherence strategies
« Reply #79 on: February 02, 2012, 10:43:56 AM »
emphasis on "may"
"Iíve slept with enough men to know that Iím not gay"

Offline mecch

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Re: Unconventional treatment and adherence strategies
« Reply #80 on: February 02, 2012, 02:12:00 PM »
Yeah OK I get that there must be other considerations.
This thread is informative.

I wish we could all have limousine luxury individually precise treatments.  In my own experience, I'm already 90% thrilled that treatment was so good for everyone, by the time I got HIV (what was that, now, 2008?).  And so far, the one size fits all has been ok with me.  I was freaky on sustiva, allergic to two others, but the current one is quite smooth sailing.  They all worked well on the viral loads, so I count my blessings.

I really doubt I could push for all sorts of blood level monitoring. I'm sure what I get is a function of a certain amount of a country's resources being applied generally to the overall population's benefit. 

I guess you only get really close monitoring when there are problems with the body, organs, etc., or when you lose viral suspression, or for LTS who have been through so much. 

Since all my labs are fine so far, I just do what the doctor tells me, take what the doctor tells me to take, and that's that.

 

« Last Edit: February 02, 2012, 02:13:49 PM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline leatherman

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Re: Unconventional treatment and adherence strategies
« Reply #81 on: February 02, 2012, 02:47:11 PM »
I guess you only get really close monitoring when there are problems with the body, organs, etc., or when you lose viral suspression, or for LTS who have been through so much.
or you can get better monitoring when you join into a study, like the FOTO study, and have your labs monitored as part of research. ;) Often free meds and more agressive monitoring and therapy is a perk of being part of certain studies.

I'm sure they did this kind of study with Atripla as there are so many individuals using that medication. Whether similar studies will be done to cover other regimens is highly debateable.

Of course, until there is study on your specific regimen, one could always pay for their own theraputic monitoring.  ::) :D
leatherman (aka mIkIE)


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

Offline Hellraiser

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Re: Unconventional treatment and adherence strategies
« Reply #82 on: February 02, 2012, 04:34:18 PM »
You know, there are far more fun ways to court death than failing to take your Bactrim while skipping doses of your Atripla.

You could take up motorcycle acrobatics or set up meetings with anonymous tricks on fetlife.

...just sayin

I'm not living dangerously, comb through my posting history and you can see I'm pretty interested in the FOTO study.  I'm not even doing the 2 days off I'm only doing one, as for the bactrim it's been 2.5 years and I still haven't caught PCP, in the meantime I've spared myself 2.5 years of being on an antibiotic which to me is a success at the end of the day.  I appreciate the concern and I DO trust the doctors and the medicine, but I just don't want to do this one thing.  I'm not going anywhere any time soon.

Offline Miss Philicia

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Re: Unconventional treatment and adherence strategies
« Reply #83 on: February 02, 2012, 04:41:09 PM »
as for the bactrim it's been 2.5 years and I still haven't caught PCP, in the meantime I've spared myself 2.5 years of being on an antibiotic which to me is a success at the end of the day. 

Gee, Trey. That's like the logic someone uses not to employ HAART until they get an O.I.
"Iíve slept with enough men to know that Iím not gay"

Offline Hellraiser

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Re: Unconventional treatment and adherence strategies
« Reply #84 on: February 06, 2012, 09:56:26 AM »
Gee, Trey. That's like the logic someone uses not to employ HAART until they get an O.I.

If someone has no signs (declining CD4 or increasing viral load) of disease progression they don't use HAART, as an example I'll use Ann.  I definitely feel that at one point I was in the danger zone for picking up an OI but I feel that window has passed and I am as reasonably healthy as I can be with my numbers being low.  Frankly the antibiotics (specifically azithromycin) were making my life incredibly miserable.

Offline Rev. Moon

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Re: Unconventional treatment and adherence strategies
« Reply #85 on: February 06, 2012, 10:05:56 AM »
If someone has no signs (declining CD4 or increasing viral load) of disease progression they don't use HAART, as an example I'll use Ann.  I definitely feel that at one point I was in the danger zone for picking up an OI but I feel that window has passed and I am as reasonably healthy as I can be with my numbers being low.  Frankly the antibiotics (specifically azithromycin) were making my life incredibly miserable.

I don't find that too clever a decision, especially for someone who is otherwise fairly educated.  IIRC you were still under 200 CD4 the last time that you mentioned your numbers.  I may be wrong in that respect.

It concerns me that you do this, but hopefully there will be no repercussions to this choice that you have made.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline Assurbanipal

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Re: Unconventional treatment and adherence strategies
« Reply #86 on: February 06, 2012, 12:22:13 PM »
If someone has no signs (declining CD4 or increasing viral load) of disease progression they don't use HAART, as an example I'll use Ann.  I definitely feel that at one point I was in the danger zone for picking up an OI but I feel that window has passed and I am as reasonably healthy as I can be with my numbers being low.  Frankly the antibiotics (specifically azithromycin) were making my life incredibly miserable.

Because of a potential allergy I didn't take azithromycin either.  But that didn't stop me from taking Bactrim so that I wouldn't get fucked over by pcp again.

Generally azithromycin is needed at lower tcell counts than bactrim or other pcp prophylaxis -- you might well be beyond the point where you need azithromycin but still be vulnerable to pneumonia.


Sorry to get on your case, but your argument is one for changing drugs not for stopping them.


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%

 


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