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Author Topic: Anybody bold enough to try FOTO strategy for taking meds  (Read 21772 times)

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Offline kuttakamina

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Anybody bold enough to try FOTO strategy for taking meds
« on: May 11, 2010, 06:43:19 am »
if the link doesn't copy here, please do a google search on this study. It sound like it could work and give med takers a brief break every week.

Thoughts? Ann?

http://www.hivandhepatitis.com/2009icr/ias/docs/080709_a.html

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #1 on: May 11, 2010, 10:58:04 am »
isn't this a repeat post of http://forums.poz.com/index.php?topic=32580 which you just posted late in the afternoon on the 9th? Perhaps you should give it a few more days for someone to respond.  ;) Many people may have been busy over the weekend (with Mother's Day here in the US). Plus fewer people participate in the Research thread.

I would venture to say that the lack of response is because this is only one study of 60 people. That's not very compelling evidence yet. Is there another study with a larger cohort or one in the planning? Probably not many people here will have many thoughts about this topic as few of us are researchers (especially here in the living with instead of the research forum). Until more evidence comes out, you won't be hearing about any doctors suggesting or implementing this method, so I doubt you'll hear much about it from people in these forums. There's just not enough evidence yet for anyone to make firm judgements on it's efficacy.

What is the big deal with "taking a break" anyway? For example, diabetics don't get a break from taking shots of insulin. I take 4 pills every night with dinner and don't really see the need to take a break as taking those 4 pills is not near as burdensome as when I used to take 28 pills days back in 97 or so. I pretty surprised that they would even look at giving Atripla, one a day, pill takers a "break" as that's nearly the easiest regimen to date anyway.

Although, I do understand that this could promote some reduction in costs. However, they have only studied this with one regimen, which many don't take, and so many wouldn't see these costs benefits. They also discuss the problems of people "forgetting" to take their meds when they were supposed to resume on the five days on. That in itself could be a HUGE problem in adherence that would lead to some disastrous results if this strategy was applied broadly with all Atripla users, much less with any other regimen.
leatherman (aka Michael)

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

Offline tednlou2

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #2 on: May 12, 2010, 12:12:07 am »
If it did work, it would be 8 less doses a month, 96 less doses a year, 960 less doses over 10 years, 1,920 less doses over 20 years, 2,880 less doses over 30 years.  Multiply that by over 1 million infected in the U.S. and over 30+ million worldwide.  

That would save huge amounts of money to governments who say they will not be able to afford to keep paying for meds as more and more people get infected.  What am I saying?  They don't seem able to cover programs now.  What will the infection number be in 30 years?  100 million??  I hope this proves to be effective.  Plus, would those 2,880 less doses over 30 years help reduce possible toxicities to the liver, kidneys, and other organs?  It would have to help some.  However, I see what you're saying Mikey.  

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #3 on: May 12, 2010, 01:09:10 am »
Multiply that by over 1 million infected in the U.S. and over 30+ million worldwide.  
...What will the infection number be in 30 years?  100 million??
subtract out all the people not taking Atripla though, including from places where Atripla is not a front line med (like where the epidemic is the worse - in Africa), and the savings you're totaling up are drastically reduced.

I'm not saying it's not a worthy topic/plan but it definitely first needs more study (as in a larger group) to prove it's effectiveness.

And then consideration needs to be given to the amount of people on Atripla who would not follow foto and end up with resistance issues. the once a day pill was partially generated to provide a way for those with "issues" (homelessness, substance abuse, poverty, depression issues, etc) to have an easier path to staying adherent. I just have to believe that there would be a considerable amount of people who would fail on this tricky (is this my day off or day on??) plan.

I'm sure this plan, once proven medically effective, could work for many people though; but I imagine that it would have to be implemented, not as a first line treatment strategy; but as a secondary dosing strategy, suggested and monitored by doctors based on their knowledge of their patients' individual issues and abilities to follow such a plan. In the long run, that reduces those cost savings even lower as a even smaller subset of patients would actually be on such a plan.
leatherman (aka Michael)

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

Offline tednlou2

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #4 on: May 12, 2010, 01:37:31 am »
subtract out all the people not taking Atripla though, including from places where Atripla is not a front line med (like where the epidemic is the worse - in Africa), and the savings you're totaling up are drastically reduced.

I'm not saying it's not a worthy topic/plan but it definitely first needs more study (as in a larger group) to prove it's effectiveness.

And then consideration needs to be given to the amount of people on Atripla who would not follow foto and end up with resistance issues. the once a day pill was partially generated to provide a way for those with "issues" (homelessness, substance abuse, poverty, depression issues, etc) to have an easier path to staying adherent. I just have to believe that there would be a considerable amount of people who would fail on this tricky (is this my day off or day on??) plan.

I'm sure this plan, once proven medically effective, could work for many people though; but I imagine that it would have to be implemented, not as a first line treatment strategy; but as a secondary dosing strategy, suggested and monitored by doctors based on their knowledge of their patients' individual issues and abilities to follow such a plan. In the long run, that reduces those cost savings even lower as a even smaller subset of patients would actually be on such a plan.

Is Atripla the only med that could be considered for this kind of dosing?  When I wrote my previous post, I was thinking there were other studies using other regimens besides Atripla.  When I went back to search, I couldn't find where they are studying other regimens.  So, you're right.  Atripla only wouldn't create the savings I suggested.  For some reason, I thought there was another regimen that had a long half-life like Atripla.  I guess for those taking Atripla, it would provide some savings. 

Offline fearless

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #5 on: May 12, 2010, 01:44:51 am »
I know someone that used to participate regularly on this site that had been succesfully using this strategy over a number of years.

I'd happily do the trial but it is not happening in my neck of the woods.
Be forgiving, be grateful, be optimistic

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #6 on: May 12, 2010, 02:03:37 am »
I'd happily do the trial but it is not happening in my neck of the woods.
you'd have to switch over to Atripla first anyway ;) :)
leatherman (aka Michael)

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

Offline Inchlingblue

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #7 on: May 12, 2010, 09:54:29 am »
If I were on Atripla and was undetectable for at least 8 months I would consider doing FOTO.

Some people such as Shawn Decker, who blogs on Poz.com, takes his meds (Reyataz/Norvir/Truvada) one week on, one week off and is doing well.  

To be on the safe side, if doing something unorthodox it's probably best to do that special test where they check blood levels of the drugs in one's system (forgot the name of it), since that can vary.


LINKS:

http://www.poz.com/articles/shawn_decker_hiv_2303_16089.shtml

 
« Last Edit: May 12, 2010, 09:58:49 am by Inchlingblue »

Offline Hellraiser

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #8 on: May 12, 2010, 10:37:32 am »
Yeah the last thing you wanna do is screw around and become resistant to something that's working for you because you were testing a theory.  I do think that Atripla is so strong and prevalent in the body usually that it could probably be taken every other day or something equally obtuse it's just that 5 on 2 off (weekdays/weekends) is a lot easier to remember than "Did I take my pill yesterday or the day before?".  Anyway I wouldn't be surprised if this would work for me but I'm not even UD yet although it seems to be coming on quickly, fingers crossed for my next set of bloods.

Offline J.R.E.

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #9 on: May 12, 2010, 12:50:42 pm »


To be on the safe side, if doing something unorthodox it's probably best to do that special test where they check blood levels of the drugs in one's system (forgot the name of it), since that can vary.


 

I think that's referred to as TDM ( Therapeutic Drug Monitoring )  If I am wrong someone can correct me.

http://www.ncbi.nlm.nih.gov/pubmed/12829033    There may also be a more recent link than this one.


Ray
« Last Edit: May 12, 2010, 12:53:02 pm by J.R.E. »
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 azprince

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #10 on: May 12, 2010, 09:42:26 pm »
if the link doesn't copy here, please do a google search on this study. It sound like it could work and give med takers a brief break every week.

Thoughts? Ann?

http://www.hivandhepatitis.com/2009icr/ias/docs/080709_a.html
Sounds promising , lets hope the pharmas wont slaughter the study  ;)
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #11 on: May 12, 2010, 10:10:29 pm »
lets hope the pharmas wont slaughter the study  ;)
this study was completed at 48 wks, using Atripla (efavirenz, tenofovir and emtricitabine) with 50 patients, resulting in 28% savings and maintaining virologic suppression (although 5 blipped at <=200 in wk 48 but returned to <50 by the next testing)
leatherman (aka Michael)

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

Offline Hellraiser

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #12 on: May 12, 2010, 10:14:45 pm »
this study was completed at 48 wks, using Atripla (efavirenz, tenofovir and emtricitabine) with 50 patients, resulting in 28% savings and maintaining virologic suppression (although 5 blipped at <=200 in wk 48 but returned to <50 by the next testing)

Hmmm that is an entire year.

Offline kuttakamina

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #13 on: May 13, 2010, 06:28:23 am »
We must note that this was not just any study done by an unknown university, this was actually reported at the internation aids conference so I think it does hold water. Also, it was conducted over a period of almost one year so that's  promising.

I would have considered it (and may still) if I had little higher CD4s but where I'm now in double digits I dare not think about it.

There's promising news all around. For those of us who pay dearly for the drugs (in my country it is almost twice the amount of an average persons' monthly salary) and the fact that it will takers a break, I think it's worthwhile to consider.

Hey fearless, do you mind sharing some more info on your friend who did this? what meds was he on? Was he regularly getting monitored?

Offline azprince

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #14 on: May 13, 2010, 06:00:07 pm »
I think if no concerns raise Medically from this we should discuss such option with our Doctors and see how they respond?
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline kuttakamina

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #15 on: May 16, 2010, 05:03:48 am »
Well, a mere mention of it to my Doc had him get little fueled up, and he turned the idea down immediately, saying he doesn't believe in such studies.

That leaves me uhm...wondering some more...

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #16 on: May 16, 2010, 10:15:01 am »
Well, a mere mention of it to my Doc had him get little fueled up, and he turned the idea down immediately, saying he doesn't believe in such studies.
did he give you some of his reasoning or just rule it out out-of-hand? ??? I know sometimes you can get a doctor to chat with you like a real person with a real brain and other times all they want you to do is exactly what they say with no questions. ::) LOL
leatherman (aka Michael)

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

Offline ElZorro

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #17 on: May 16, 2010, 02:43:55 pm »
As a newbie, I found this information very interesting; the indication that suppression can be maintained with Atripla without 100% adherence.

There were some other threads about individuals who have lost their access to medication because of funding shortfalls and those threads scared me to no end.

I receive my treatment from the VA and am wondering if it doesn't make sense to skip a dose or two each week just to build up a stockpile "just in case" for some reason or other, my medical coverage is cancelled or curtailed (I am not a retired veteran)

On the other hand, should one ever second guess their medical professionals? As if being afraid of this virus isn't enough.....geez!

I don't know how those of you who have had HIV for a long time have been able to maintain any semblence of sanity. It's driving me up a wall! :-\

Offline Hellraiser

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #18 on: May 16, 2010, 02:50:44 pm »
This FOTO thing is actually why I don't worry too much about atripla's dosing being on or off by any amount.  I feel like if you could go 2 whole days without a dose then going 4 hours in any direction isn't going to hurt you.

Offline ElZorro

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #19 on: May 16, 2010, 02:56:18 pm »
When I started, my pharmacist indicated that a 4-5 hr window either way is okay with Atripla. I typically take it each night between 9p and 1a depending on bedtime.

Offline azprince

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #20 on: May 18, 2010, 03:11:27 am »
Dr Bob is already slamming the study in his blog by saying it will make the Phamrmacutical companies lose money   ;D .... This is me just kidding,
But he did indeed critisize the study saying its not reliable, which makes me question how fast he responded to this study with an amount of harsh  skepticism that didnt show up when it came to discussing  SF new policy of early Meds, which for sure will put more need for the lille expensive cute pills  when evidence on how useful its is to start with high number is simply  not there yet...just wondering  ???
I have to admit : the good thing is that from now on;  I have no option but to succeed , still its ok to worry :))

Offline chguy78

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #21 on: May 19, 2010, 10:35:44 am »
When I started, my pharmacist indicated that a 4-5 hr window either way is okay with Atripla. I typically take it each night between 9p and 1a depending on bedtime.

My doctor indicated the same when I was traveling overseas (12-hour time difference).  She said that I could just use the local time to take my meds and not worry about the time difference.  This was after I had already gone, though.  I found out that it's a LOT harder for me to remember to take my pills at night than in the morning (or to have the pills with me when I needed to take them).
01/11: CD4=753 (36%), VL=Undetectable
07/10: CD4=531 (33%), VL=Undetectable
04/10: CD4=746 (33%), VL=Undetectable
01/10: CD4=566 (35%), VL=Undetectable
10/09: CD4=436 (31%), VL=405
07/09: CD4=631 (27%), VL=847
06/09: Started: Truvada, Reyataz, Norvir
05/09: CD4=426 (28%), VL=38,300
04/09: Positive; CD4=466 (28%), VL=39,700
10/08: Negative

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #22 on: May 19, 2010, 11:17:08 am »
On the other hand, should one ever second guess their medical professionals?
I have liked and trusted all my doctors; however, they are just human and so I also rely on myself to protect my own health. I read the poz news, the lessons on this site, the med description/info at this site, and stuff over in the research threads. Twice I have had doctors prescribe incorrectly, three times I have demanded meds changes to something I researched and "knew" would be better, and at least half a dozen times in 20 yrs, I've known about a med coming out before my doctor. So I don't "second guess" my doctors so much, as just use them as another source for handling my own health care.

I receive my treatment from the VA and am wondering if it doesn't make sense to skip a dose or two each week just to build up a stockpile "just in case" for some reason or other, my medical coverage is cancelled or curtailed (I am not a retired veteran)
several studies have shown that nearly all HIV meds need >= 95% adherence to remain effective. Dipping below 95% does not mean instant resistance; but below that level, resistance mutation could happen at any time. Skipping a dose or two a week would probably push you below 95% adherence and would not be recommended. For many meds, missing just a dose or two a month would be the most to stay above that marker.

if I had not "stockpiled" my meds, I would have perhaps gone 2-3 months without meds in the confusion (not mine; but the confusion in the medicaid and social services offices) of simply moving from Ohio to South Carolina. Rather than skipping does, you can also check and see if it's possible to get your refills a few days early each month. Either way "stockpilling" meds is a long, slow process ;) but it makes no sense to hurt your health today over the fear of a possible future issue. Don't borrow trouble; but do prepare for trouble. ;) ;D
leatherman (aka Michael)

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

Offline Hellraiser

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #23 on: May 19, 2010, 11:43:46 am »
yeah but if 5 on, 2 off was the recommended dosing (because it was equally effective once the VL was suppressed) then 5 pills a week would be 100%.

My doctor doesn't seem to understand the meds and the realities of pozzie life as much as I would like him to but sometimes I wonder if I'm just being too critical.  I mean he is an hiv specific ID doc so I think I should not know something that he doesn't, but while i'm relaxing surfing the internet looking for new hiv related information he's treating patients.  Unfortunately he has a very busy practice.

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #24 on: May 19, 2010, 01:12:34 pm »
yeah but if 5 on, 2 off was the recommended dosing (because it was equally effective once the VL was suppressed) then 5 pills a week would be 100%.
true and that's another reason I'm not convinced by this FOTO study. Missing 8 doses a month would put you at about 75% adherence, and there are a lot more studies that say how bad that is. Although maybe the stipulations are starting at UD and the cycle of 5/2 that makes it work.

For me, I'd need another study or two before I risked my UD to only 75% adherence. it took me a freaking decade of adherence to finally get to UD, so I'm a little leery of putting in on the line after only 2.5 yrs at UD. ;)

My doctor doesn't seem to understand the meds and the realities of pozzie life as much as I would like him to but sometimes I wonder if I'm just being too critical.
no you're not too critical really; but it's just the way it is. The answer from too many ID docs is often "take your meds and everything will work out". That happens with a lot of other people too. I'm very glad my ASO is partially staffed with pozzies, because just like those HIV- docs, those nice middle-class HIV- social workers haven't got a clue to the reality of being poz either. As I was implying to Zorro, there's only such much you can expect these docs, nurses, and social workers to understand or even care about. It's not their life on the line if you don't take your meds, or can't deal with side effects, or don't fill out the right form, or don't apply for the right assistance, or don't switch off an older "more toxic" med. That's not to say that they're not helpful; but they don't really understand and frequently that makes their help a little meaningless and just vapid words. But they have such nice smiles that I can't hate them for not having a clue.  ;) :D
leatherman (aka Michael)

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

Offline Inchlingblue

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #25 on: May 19, 2010, 01:32:12 pm »
Whether FOTO works or not is all about the pharmacokinetics, i.e. how much of the drugs remain in one's system, based on the half lives.

It appears, based on FOTO, that after taking Atripla for five days straight the level of drugs in the plasma is high enough to control the virus for those two days of no drugs (for someone who is already undetectable).

As someone else mentioned, every other day might also work but it's harder to keep track of and probably not worth trying without more proof.

Pharmacokinetics can also vary by individual based on one's genetics:

Gene Mutation Might Affect HIV Drug Levels in Body

Researchers at Ohio State University announced that they have discovered a gene mutation that can significantly increase blood levels of roughly half of all drugs on the market?including many HIV drugs. This finding could ultimately lead to individualized dosing of medications and potentially reduce the risk of side effects, depending on whether a person has the mutation.


Continued . . .

LINK:

http://www.aidsmeds.com/articles/hiv_snp_cyp3a4_1667_18409.shtml
« Last Edit: May 19, 2010, 09:11:53 pm by Inchlingblue »

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #26 on: May 19, 2010, 02:19:48 pm »
Gene Mutation Might Affect HIV Drug Levels in Body
Researchers at Ohio State University announced that they have discovered a gene mutation that can significantly increase blood levels of roughly half of all drugs on the market?including many HIV drugs.

WooHoo to my old state of Ohio for that one!  :D

I'm not surprised to hear of this. I've often taken half doses of what I've been prescribed (meds across the board) because I suffer side effects similar to being overdosed when taking the full dosage. My anecdotal evidence, your mileage may vary of course, of the prescribed amounts being an overdose, is that at times when I was only 75% to 80% adherent, I had the most consistent stable numbers and the least amount of side effects. Half doses of pain meds work just fine, while normal doses knock me out or make me high. ::) Of course, I've discussed these issues with my doctors throughout the yrs and have gotten dosing requirements adjusted with their approval and monitoring.

I obviously have a fast metabolism being a thin person, while eating a ton of sugar and carbos. :D I believe that's why I've had such problems with the norvir gelcap - I can usually literally tell when it has burst and the med is being absorbed. Back in the day, they used to overdose us on the AZT and Norvir (8 tablespoons or 8 gelcaps a day, in addition to other hiv meds), so I don't doubt there's still some overdosing going on today.

This discussion is just another reason to why I was discussing in another thread how I think of even today's meds as still slightly experimental because of the length of time approved, lack of long term results because no one has used them long enough, and because they're still learning just what effects these meds have. According to this FOTO study, we may be seeing that even current dosing schedules may still be experimental and not optimal.
leatherman (aka Michael)

We were standing all alone
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Offline Assurbanipal

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #27 on: May 19, 2010, 04:32:52 pm »


I'm not surprised to hear of this. I've often taken half doses of what I've been prescribed (meds across the board) because I suffer side effects similar to being overdosed when taking the full dosage. My anecdotal evidence, your mileage may vary of course, of the prescribed amounts being an overdose, is that at times when I was only 75% to 80% adherent, I had the most consistent stable numbers and the least amount of side effects. Half doses of pain meds work just fine, while normal doses knock me out or make me high. ::) Of course, I've discussed these issues with my doctors throughout the yrs and have gotten dosing requirements adjusted with their approval and monitoring.


On the other hand, have you ever considered that your consistently low tcell counts might be related to your rather informal approach to adherence?
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%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline Miss Philicia

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #28 on: May 19, 2010, 04:54:30 pm »
On the other hand, have you ever considered that your consistently low tcell counts might be related to your rather informal approach to adherence?

As opposed to my 1380 t-cells and 99.9% perfect adherence?  Why yes ma'am, I have!
"I’ve slept with enough men to know that I’m not gay"

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #29 on: May 19, 2010, 05:07:36 pm »
On the other hand, have you ever considered that your consistently low tcell counts might be related to your rather informal approach to adherence?
nope. ;D

During 20 years with hitting lows of 5, 7, and 12, and having spans of 3, 4, and 5 years at 98% compliance with no significant jump above 300 (once was 305 another time 311), but able to sustan a nearly consistent 245 when UD, I just believe I'm one of those who'll never regain what the evil AIDS killed off. Since I haven't been back in a hospital with an OI in over 12 yrs now, obviously the cd4s that have survived are really good and doing what they ought to be doing. Having a bunch of cd4s isn't quite as important as keeping the viral load undetectable so there's actually an immune system that can work - as mine seems to be doing. ;)

In addition, I sure never knew my pre-HIV cd4 count, so for all I know maybe I have regained everything I had. ;)

edited to add:
perhaps I should see about one of those trials (http://forums.poz.com/index.php?topic=25693) for people (like me) who can achieve undetectable but still have consistently low cd4s to see about getting a boost.  ;)
« Last Edit: May 19, 2010, 05:18:08 pm by leatherman »
leatherman (aka Michael)

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

Offline newt

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #30 on: May 19, 2010, 05:43:42 pm »
Quote
1380 t-cells

Go jerk mr, luck fuck, or hardworking one perhaps
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Offline tokyodecadence

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #31 on: May 19, 2010, 06:43:35 pm »
While I don't do this on a regular basis, I took a one-day break from my meds when I switched from taking them at night to taking them when I wake up in the morning. If I felt that my body was being overloaded with drugs at any point, and my numbers were ok, I'd talk to my doctor about taking a day or two off.



The key point being that I'd talk to my doctor, first.
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Offline Assurbanipal

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #32 on: May 19, 2010, 08:05:36 pm »
nope. ;D

During 20 years with hitting lows of 5, 7, and 12, and having spans of 3, 4, and 5 years at 98% compliance with no significant jump above 300 (once was 305 another time 311), but able to sustan a nearly consistent 245 when UD, I just believe I'm one of those who'll never regain what the evil AIDS killed off.

But according to the graph in your sig line you've only been consistently undetectable for the past 4 years during which period a regression against your tcell count appears to go up slowly. 98% compliance on a regimen that doesn't keep you undetectable is really pretty irrelevant.   So, now that you have found a combo that works ... perhaps you should give 99%+ compliance a try.  There was a study showing that better than 95% gives better results you know...

Sorry if this is coming across as too much of a noodge (but you know we are all desperately trying to increase our ignore count   ;)  )
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%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline Rev. Moon

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #33 on: May 19, 2010, 08:40:49 pm »
Go jerk mr, luck fuck, or hardworking one perhaps

Does anyone have a Newt to English translator?
"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 Miss Philicia

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #34 on: May 19, 2010, 08:59:49 pm »
Does anyone have a Newt to English translator?

kernow a'gas dynnergh
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Offline Ann

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #35 on: May 19, 2010, 09:08:55 pm »

Does anyone have a Newt to English translator?


More to the point, does anyone have a Rev Moon to earth translator? This place could really use one. Gotta link?
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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 leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #36 on: May 19, 2010, 09:20:04 pm »
But according to the graph in your sig line you've only been consistently undetectable for the past 4 years during which period a regression against your tcell count appears to go up slowly. 98% compliance on a regimen that doesn't keep you undetectable is really pretty irrelevant.   So, now that you have found a combo that works ... perhaps you should give 99%+ compliance a try.  There was a study showing that better than 95% gives better results you know...
though all this consideration of my non-atripla non-FOTO med taking is pretty OT,

yes you are correct that by being at least 98% adherent to a combo that doesn't make me puke every day and that my hiv isn't resistant to is exactly why I hit those lofty peaks barely over 300 (separated by two years). It's just been a shame that all those partners of mine have died (depression issues), that I've been as poor as a church mouse (nutrition issues), that nearly every HIV med previously has made me consistently and daily puke, that I've lost 3 homes in three years, that I had resistance issues, and that I lived through years when there were no new meds to even take. Perhaps I could have have greater adherence years ago and been better off today. But then again if I hadn't done the AZT for 8 months before the daily puking and anemia nearly killed me off faster than my first partner was dying and caused me to quit that "regimen" then I probably wouldn't be here anyway. Or the 9 months on Sustiva with the "focus" issues that caused me to have to quit working and quit driving, not to mention the daily puking, before being the cause of me falling down a staircase and wondering if that's how I would be found dead one day, maybe I wouldn't be here.

So what you see as adherence issues for me over the last 20 years, I see as all the stop gap measures I took fending off an AIDS death, while AIDS destroyed the life around me, until finally some meds came to market that worked and didn't make me wish I was dead instead. I see by your signature line that you were "lucky" enough to start on post-2005 HAART meds and immediately had the kind of improvement in vl and tcells that these meds provide. Be thankful that you didn't have to go through years of pre-HAART meds that were only semi-effective at keeping HIV in check and maintaining/raising tcell counts. (no one ever said that AZT mono-therapy would cause your tcells to rise. All they hoped it might do was keep you alive. heck, researching another thread last night, I realized that the year I was hospitalized with PCP, 4 yrs after my HIV/AIDS diagnosis, was when they finally had a viral load test. Think of that! Four partial years of meds with no way to even measure the viral load. Hard to determine if your adherence is even working when they aren't even able to measure such a basic number.) It looks like you've had a pretty good improvement over the last 4 years of having HIV/AIDS. I happen to think that I'm doing pretty good having been infected for 25 yrs and having been diagnosed with AIDS 20 years ago, especially since all my friends and partners from that time are dead and I am the only one that survived.

Though I just don't see how any of this matters given that my 250 tcells have done just fine keeping me out of the hospital for 12 years and have gotten me to a point now where I'm healthier than I've been in 20 years. Then again I wasn't even commenting about tcells counts, as I frequently mention that it's not how many you have, but how well they work. My comments concerning my qualms with FOTO were about FOTO causing a rise in viral load. Even though I've lived 5 times longer with AIDS than you have and though a decade of sub-optimal, more toxic meds that you'll never have to take to try to just stay alive, thanks for your concern over my adherence and my tcells. ;)
leatherman (aka Michael)

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

Offline Assurbanipal

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #37 on: May 19, 2010, 09:59:07 pm »
though all this consideration of my non-atripla non-FOTO med taking is pretty OT,

It is relevant in that FOTO is all about whether it is safe to skip meds.  As you point out, FOTO really only applies to HAART that includes Sustiva -- but I don't think all the posts in this thread recognized that fact. And you did bring up your non-ATRIPLA med taking so presumably you thought it had some application.

In this thread and in others you have suggested to people that they can skip doses without appreciable harm, since you did and you are still alive.  But you don't acknowledge that this might have had some negative consequences for you, nor that many other long term survivors have had better adherence and better tcell responses. 

You point out that I'm on modern drugs -- I am, and am very grateful for what they have done for me, but so are the individuals you are suggesting might skip doses to build up a supplyin other threads.

I did not intend this as a personal attack and apologize if it came across as one.  I recognize and honor your struggles and choices with prior medications.  But we have new medications now, and some of those prior choices may no longer be optimal.
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%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #38 on: May 19, 2010, 11:41:11 pm »
It is relevant in that FOTO is all about whether it is safe to skip meds.  As you point out, FOTO really only applies to HAART that includes Sustiva.....In this thread and in others you have suggested to people that they can skip doses without appreciable harm, since you did and you are still alive.  But you don't acknowledge that this might have had some negative consequences for you, nor that many other long term survivors have had better adherence and better tcell responses. 
much greater minds than mine say that doses can be skipped, up to a certain amount, without appreciable harm. I do not arbitrately say these things without scientific proof, as I am not a scientist. Unlike the single FOTO study, there are multiple studies of multiple HIV meds documenting that while 100% adherence should be the goal to strive for, something slightly less than that can be reached without causing harm (ie VL increase or resistance mutations)
Providers strive to enhance adherence in HIV patients and view a 95% adherence rate to the treatment regimen as capable of producing the greatest treatment effect and diminishing the likelihood of resistant strains from developing (Vervoort et al 2006).
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504066/
?One pill, once daily?: what clinicians need to know about Atripla?

In this thread and in others you have suggested to people that they can skip doses without appreciable harm, since you did and you are still alive.
in the threads in which i had suggesting skipping doses, it has been under the auspices of "stockpiling" meds.
There were some other threads about individuals who have lost their access to medication because of funding shortfalls and those threads scared me to no end.
In america not everyone is guaranteed uninterrupted access to meds. I experienced such an occurence in moving from one state to another, and cuts to ADAP are currently causing people to lose access to meds that they have been on. A very scary way of protecting yourself for a short amount of time when access to meds has been lost is to have >95% adherence while stockpiling the 5% of untaken doses. I would never suggest this if the data showed 100% daily adherence was demanded (this FOTO study itself shows may not be neccesary) or if all americans had perfect uninterruptable access to meds.

Please re-read through those threads and see how precarious keeping access to meds is for some people. Perhaps you can do your part is speaking out against the ADAP cuts that are harming Americans and putting them in a position where death might be possible (ADAP cuts in SC in 2006 caused 4 deaths, and in Kentucky 3 deaths). If you're available, there will be another rally in Columbia SC next Thurs May 27th at 630pm. The more voices that our state government can hear and the more faces on the TV news, the more likely Americans can continue receiving meds, like Atripla, and not die.

If you have a better solution, I'm sure my local ASO would love to know it as this month they will be cutting people off from meds due to state ADAP budgets cuts and "cost saving" measures of reduced eligigblity. I sure would have like to have known your solution when I would have gone three months without meds - which is definitely NOT 95% adherence. Instead my stockpiled meds saved my UD viral load, prevented resistance issues and kept my immune system (my tcells) from falling even lower if HIV had been allowed to flourish once again in my system.

Obviously you are not only lucky enough to have started out and to still be on newer less-toxic more-effective meds; but you must also be lucky enough to be have a secure line to uninterrupted meds. Good for you; not all of us are so blessed and have to make hard choices to stay alive, just like I did in taking such a toxic med as AZT back in 1992, or "stockpiling" my meds to last through the bureacracy of changing states. 

As you point out, FOTO really only applies to HAART that includes Sustiva -- but I don't think all the posts in this thread recognized that fact.
I have repeated pointed out that this FOTO dealt ONLY with Atripla. Matter of fact very near the beginning of this thread we talked about how this study only applied to Atripla, which changed Ted's projected savings figures.
Is Atripla the only med that could be considered for this kind of dosing?  When I wrote my previous post, I was thinking there were other studies using other regimens besides Atripla.  When I went back to search, I couldn't find where they are studying other regimens.  So, you're right.  Atripla only wouldn't create the savings I suggested.  For some reason, I thought there was another regimen that had a long half-life like Atripla.  I guess for those taking Atripla, it would provide some savings. 
this study was completed at 48 wks, using Atripla (efavirenz, tenofovir and emtricitabine) with 50 patients, resulting in 28% savings and maintaining virologic suppression (although 5 blipped at <=200 in wk 48 but returned to <50 by the next testing)
you'd have to switch over to Atripla first anyway ;) :)
Some people such as Shawn Decker, who blogs on Poz.com, takes his meds (Reyataz/Norvir/Truvada) one week on, one week off and is doing well.
http://www.poz.com/articles/shawn_decker_hiv_2303_16089.shtml
So far only one other post even vagueley mentioned other meds and some alternative type of dosing like FOTO, and for that discussion you should direct your comments to Trey and his comment about Mr. Decker.

And you did bring up your non-ATRIPLA med taking so presumably you thought it had some application.
I brought up my OLD non-Atripla meds when the discussion turned to the concept of overdosing, when I discussed norvir and azt dosing circa 1995.
Back in the day, they used to overdose us on the AZT and Norvir (8 tablespoons or 8 gelcaps a day, in addition to other hiv meds), so I don't doubt there's still some overdosing going on today.
In no way have I mentioned my current regimen at all, much less in conjection with the OP topic of FOTO.
leatherman (aka Michael)

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

Offline tednlou2

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #39 on: May 20, 2010, 04:28:09 am »
I saw a news report a couple years ago about the need for a blood test to see how much of a drug a person needed.  They were saying meds aren't always one size fits all.  They talked about all meds.  The story talked about how a 100 pound person may not need the same amount as a 300 pound person.  It also discussed pain meds and how an 120 pound woman is often given the same dosage of pain med as a 250 pound woman or man. 

The only personal experience I have with this is the pain med situation.  When you have a dental procedure or surgery, many times they will give the same dosage to everyone.  I've noticed many of my skinnier friends will complain the pain med is too much and they get sick, while people like me around 200 pounds will say it isn't strong enough.

So, I'm wondering how this would translate to HIV meds.  Could some achieve the benefit with a lesser dosage?  On the other hand, could others need more?  I've tried to find that report about the need to produce a test to see how much of the drug a person needed.  I'll keep looking.

Offline Ann

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #40 on: May 20, 2010, 11:19:47 am »

So, I'm wondering how this would translate to HIV meds.  Could some achieve the benefit with a lesser dosage?  On the other hand, could others need more?  I've tried to find that report about the need to produce a test to see how much of the drug a person needed.  I'll keep looking.


As I've reported in these forums before, my bf is on 200mgs daily of Sustiva (with Truvada) instead of the usual dose of 600mgs.

His dosage was reduced a few years ago because he was waking the whole house up every night with his screaming nightmares. They used TDM (therapeutic drug monitoring) to find the right dose for him.

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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 kuttakamina

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #41 on: June 05, 2010, 07:34:01 am »
I think this whole issue is BS. While there may be very valid studies that prove 100 adherence is not necessary, there will always be critics from the pharm industry trashing them. It make very depressed to think there is no way out of this mess.

Just like another study by USCA Los angeles that had a bunch of poz ppl do mindful meditation and noticed a drop in their VL counts and maintenance of CD4 but was also trashed by pharma dogs.

My doc didn't give any reason for saying no to FOTO but just said he doesn't believe in it. This fear of hiv and impending death is what irks me the most while there are countless no. of people not taking anything and doing very well,  our Ann  included.



Offline Hoover

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #42 on: October 25, 2010, 10:15:08 am »
Wow Leatherman you are a surviver!
I read everything you wrote in this thread and I think the most important thing you said is that we need to take charge of our lives and meds. Doctors are only human, they do their job and go home to their families. They may not have the time to do research on the latest studies or meds. We need to stay informed and if our doctor doesn't want to participate with new findings, we should think about replacing him.

Congratulations of beating this virus for so long and having the strength to continue.

Hoover
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline smiteler

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #43 on: October 25, 2010, 11:41:52 am »
I saw a news report a couple years ago about the need for a blood test to see how much of a drug a person needed.  They were saying meds aren't always one size fits all.

 in my foggy memory...

 when i was having problems with side effects from reyataz making me look
like an alcoholic about to die
i remember my id doc mentioning a dna type test that  would
tell them what the best working combo for me would be.
i know i didn't do it because the cost of the test was over 3 grand and
insurance wouldn't pay for it.

i would do that study in a heartbeat..
i was in a interuption study where they stimulate your immune system
with an injection of canary pox then they monitor the shit out of you every few weeks
monitoring how long your body can fight without drugs..
i lasted the longest without drugs in the study
over 3 years i kept my cd4 above 200
« Last Edit: October 25, 2010, 11:46:39 am by smiteler »

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #44 on: October 25, 2010, 12:34:38 pm »
i remember my id doc mentioning a dna type test that  would
tell them what the best working combo for me would be.
i know i didn't do it because the cost of the test was over 3 grand and
insurance wouldn't pay for it.
a genotype test examines your hiv for mutations to see what drugs will work and which ones it is resistant to

nowadays a person about to go onto treatment should have this done, since they might have been infected with a mutated version. this is a less costly test but will weed out all the meds that won't work for you. (it'd be a shame to go onto a med your strain was already resistant too and not have the meds work.)

a phenotype examines your hiv against med combos to see how effective each one is and hence which is the "best" option

this is the more expensive test that you mentioned. depending on the amount of mutations that your HIV may have, this test could be necessary to figure out just the right combos if your genotype test returns many mutations.

for more info: http://www.hopkins-aids.edu/management/laboratory_testing/resistance_testing__phenotype.html?contentInstanceId=264827 or http://www.hivresistanceweb.com/protected/testinfo.shtml
leatherman (aka Michael)

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

Offline smiteler

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #45 on: October 25, 2010, 01:14:31 pm »
that was it..
thank you leatherman

i think maybe one of the reasons that so many preach strict adhearance  is that
the drugs don't have the same effects for each person and each person doesn't have the same strain
of hiv, some hiv strains are stronger then others i was told.
 the amount of labs it might take to properly monitor someone skipping doses
would  be alot i would think?
maybe enough to offset alot the savings from skipped doses?
when i was on the interup study i gave labs every week for a couple of months
then they slacked it off to every 2 weeks then once a month.


the way i look at it is the meds we take is a type of weak poison
 it just happens that one of the effects works for treating hiv.
if i can take any less of that poison and still safely treat my hiv
sign me up yesterday please..

Offline Hoover

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #46 on: October 25, 2010, 02:14:41 pm »
Quote
the way i look at it is the meds we take is a type of weak poison
 it just happens that one of the effects works for treating hiv.
if i can take any less of that poison and still safely treat my hiv
sign me up yesterday please..

smiteler,
Amen brother!
Infection date: March 16, 2010
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Offline Joe K

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #47 on: October 25, 2010, 03:49:57 pm »
The reason that so many of us preach adherence, is that without, you may very well die. The drugs today are very different from the early drugs and I am all for investigating ways to reduce the amount of drugs we must take, however, before I start skipping doses, I want some hard peer-reviewed science, explaining my options. I urge caution to anyone, who is considering changing their drug adherence, until much more is known. This is not the time to be worried about saving money or avoiding some unpleasant side-effects, it is about keeping you alive. I am not suggesting that anyone must live with undesirable drug effects, just that you better know what you are doing, because the price of failure... could be your life.

Offline leatherman

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #48 on: October 25, 2010, 06:01:56 pm »
i think maybe one of the reasons that so many preach strict adhearance  is that
the drugs don't have the same effects for each person and each person doesn't have the same strain
of hiv, some hiv strains are stronger then others i was told.
adherence is preached because there is nothing that kills off HIV, so it must be "tamed", kept under control so that it doesn't damage your immune system and doesn't replicate. The meds available today do that fine; however HIV is a sneaky little mutating bug, and if you let up the pressure (ie slack off on keeping the proper amount of meds in your system to keep HIV under control) than BLAMO! HIV mutates to not be affected by your meds (it becomes resistant to the meds) and it's able to replicate as much as it wants.

Of course there are other meds, so you're not doomed; but you would have to have a genotype test and perhaps phenotype test to figure out what meds would work. There is a further problem - it your HIV mutates against too many combos, or mutates the wrong way, there may be NO more meds to fight against it.

I have been in that predicament a couple of times myself; but in the 90s and early 00s they were coming out with newer meds, so I just had to hang on (that means I hoped that I didn't die with my rising viral load, immune system destruction, and opportunistic infections) till I could get on the newer meds. Trust me, you don't want to go that route  ;) not only it is really scary; but you run the risk of dying or of having permanent problems and permanent immune system damage.

that's why this FOTO study is interesting but scary. It would be nice to have some days off, not have to take as high a dosage etc; but the people in that study are running the risk of developing resistance and having those ensuing problems. Of course, separate studies would have to be done for all sorts of combos, since this study is only about Atripla (which shows some promise of having a lighter dosing schedule).

Thinking of your meds as "poison" is a little iffy though. ;) HIV meds, even when they produce bad side effects, will not kill you, so they're really not poison. Many people take meds and have no bad short term or long term effects - except it keeps the HIV in check. Other people may have side effects to deal with; but having side effects is vastly different from the alternate of not treating HIV - being dead. ;) Because though the meds have changed a lot in the last 20-30 yrs, HIV hasn't changed. Untreated HIV still leads to AIDS and that is still a terminal disease.
leatherman (aka Michael)

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

Offline hope_for_a_cure

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Re: Anybody bold enough to try FOTO strategy for taking meds
« Reply #49 on: October 25, 2010, 06:11:46 pm »
Personally I would not do it (at least not yet). 

 


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