POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: witch on December 12, 2013, 10:10:41 am
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I've been taking half pill of Complera /day for 1.5 months. I am still undetectable. My goal was to reduce side effects (insomnia, anorgasmia). The insomnia is better but not resolved, the anorgasmia is the same.
That proves some hiv drugs are overdosed above the necessary concentration by a factor of 'several'.
Disclaimer: this is simply a report of my experience to benefit educated people. I do not advocate doing it. If you run into trouble doing it, it's your own problem.
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That proves some hiv drugs are overdosed above the necessary concentration by a factor of 'several'.
Anecdotal evidence proves nothing.
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Anecdotal evidence proves nothing.
1.5 months of anecdotal evidence proves less than nothing....
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If you have side effect problems then why don't you just switch to another medication? Why would you risk becoming resistant to that class of medications because of a small side effect. By taking half you risk the chance of becoming resistant I believe....I think if you became resistant you'd have some REAL insomnia thinking about doing that to yourself. My advice is talk to your doctor about side effects and find the right medication for you...don't start making up your own ideas.
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I would not recommend anyone that reads this thread to try and do the same .
The doctor who treats himself has a fool for a patient . I'm not calling the OP a fool, this is an old adage .
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I am ambivalent about your contributions to this forum as I often feel you are ambivalent about HAART and science. But thats just my feeling.
I am sure you are trying to provide information so people can take a critical mind to treatment but many of your pronouncements are deeply contradictory.
The disclaimer here, i read it and felt confused. Why make the post if you are not, you know, kinda sorta encouraging it.
I will agree that obviously what we each do is our own problem. But I come to this place to understand and get some common consensus.
Disclaimer: this is simply a report of my experience to benefit educated people. I do not advocate doing it. If you run into trouble doing it, it's your own problem.
The olive leaf extract left me similarly confused. You made claims about its utility while living the contradiction that you yourself chose HAART.
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Does anyone here know of a study that shows the minimal effective drug concentrations in vitro that suppresses the virus and how many times above that concentration is achieved by the current drug combos in vivo?
It's elementary logic that the blood concentration by the commercial drugs should be several times higher than necessary to allow for variation in drug absorption amongst patients. No pharmaceutical company is going to release a drug that is absorbed exactly at the minimal necessary level for obvious reasons ... The boost factor is probably between 1 and 10 times above the necessary concentration.
If big pharma had published such studies, I wouldn't have had to do it myself ...
My anecdotal experience with both Stribild and Complera shows these are dosed at least two times above the necessary.
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There have been one or two threads about it recently in this forum. People looking to reduce the daily mg intake. This year I believe. Maybe search for those threads because there were good discussions and maybe had some papers linked.
I think the key was having access to tests for concentrations in the blood, and then, how many people have health support to access/pay for such an experiment.
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I had a treatment interruption once and it took awhile to see a viral rebound but when it did happen I went from about 50K copies to millions in the space of 3 months and with the viral rebound I also got new and large Kaposi Sarcoma lesions when the cancer had previously been in remission for years .
Just because you got a decent set of labs today after your experiment does not mean tomorrows lab will be the same .
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That proves some hiv drugs are overdosed above the necessary concentration by a factor of 'several'.
It only "proves" something in your own case -- unless this can be replicated in a controlled group of hundreds it's completely irrelevant and means nothing to a larger audience. In fact, since this is the internet and you are a new member (no offense) it means even lest, because the trust level is less.
Further, you've been trying your little ole experiment for 1.5 months and now claim it's a success -- seriously? That's how long it takes to prove something even to yourself? It is to laugh. An actual clinical study goes on at minimum for a year or two.
Disclaimer: this is simply a report of my experience to benefit educated people. I do not advocate doing it.
If anyone derives a benefit from any of this they are no particularly educated.
ps: All this said I believe people are over-treated, but this is simply because they have to account for the fattest male patients in tailoring what the optimal dosing is. Drug companies are never going to be able to afford to manufacture every HIV medication (much less for every other chronic disease) like a clothing manufacturer in children's sizes, then adult male/female, then S, M, L, XL, XXL.
The real issue is if over-treatment is actually a huge issue -- as in how much damage is being done. If it's marginal then it's not an issue particularly. Until then the verdict is very out, meanwhile you play with your dosing and could likely end up with resistance issues. And I'll remind our readers here on the forums that it's my experience that when this happens the poster never comes back and tells us all that's why they've changed meds.
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Splitting the pill has two obvious advantages:
1. If your side effects are proportional to the dose, you reduce the side effects with lower dose while maintaining efficacy. Typical example is the ante-acne drug Accutane that is still prescribed at 10 times the required dose with severe side effects and no side effects at all at the lower dose that still works.
2. If you have to pay out of your pocket for your drugs, splitting the pill in 4 parts reduces the cost 4 times. That would allow for example in Africa to safe 4 people instead of one. That is until the Big Pharma starts selling the drugs at the lower doses at the same enormous price, of course ....
Big Pharma itself is testing lower doses combos, but until then keep your high doses. I prefer not to ...
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2. If you have to pay out of your pocket for your drugs, splitting the pill in 4 parts reduces the cost 4 times. That would allow for example in Africa to safe 4 people instead of one. That is until the Big Pharma starts selling the drugs at the lower doses at the same enormous price, of course ....
Just to be clear, are you now saying instead of halfsies it's possible to split a pill in quarters is OK? And now that you're referring to people in Africa where Complera assuredly isn't available what medication are you talking about? You're beginning to confuse me, but I realize that I'm not quite the Junior Scientist that you seem to be so that's to be expected.
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So you are arguing for your plan. Disclaimer aside. And based on a 1 to 2 month experiment.
Get a grip cherie. Safe yourself and will see about safing Africa in due time.
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Ignoring the argumentative queens here that should get a life really ...
Here is a study about different dosing of dolutegravir (tivicay) that tested 10, 25, and 50mg a day. The study found no significant efficacy difference between the three dose groups YET Big Parma is releasing dolutegravir at 50mg dose only. The overdosing factor is at least 5 and they didn't bother to test lower than 10mg doses at all. Typically for dumb medical studies, the most obvious question 'does it work at lower doses' or 'what is the lowest effective dose' is not investigated at all. That's good news to me if I ever get on tivicay cause I can cut the pill in 5.
The study: http://www.ncbi.nlm.nih.gov/pubmed/22018760
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Ignoring the argumentative queens here that should get a life really ...
The study: http://www.ncbi.nlm.nih.gov/pubmed/22018760
If you're ignoring some of the most knowledgeable people here, what is the point of your thread beyond advocating for voodoo dosing?
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Here are some of the recent threads on the topic:
I start asking myself questions about the meds
http://forums.poz.com/index.php?topic=49801.0
Half dose of Atripla for 6 months daily... good figures but still side effects!
http://forums.poz.com/index.php?topic=48956.msg591329#msg591329
favirenz 400mg vs 600mg - as good as, less CNS side effects
http://forums.poz.com/index.php?topic=49330.msg594181#msg594181
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TDM - Therapeutic Dug Monitoring. Witch - no doubt there is some logic in the idea that the set dose -- (so the one that was tested by Big Pharma, and then also approved by national medical boards - independent of so called Big Pharma) -- are going to be absorbed and then experienced differently in people.
So I think the concern is to encourage you to seek your "ideal dose" but do so as safely as possible. This would be the same concern about a lot of topics in Poz forums.... I'll get back to his point in a minute.
So the safest method to reduce your dose includes, in my opinion, 3 factors: working with a doctor to oversee and monitor the reduction, having some research behind it (because I suspect there is some, sometimes) about the SPECIFIC drug to be reduced, and TDM - therapeutic drug monitoring. The first step - working with the doctor - would also imply quite regular checks of the viral load to make sure the experiment is working...
So back to the point. Why the concern. As a newish person on the forum, take a moment to appreciate that lots and lots of people come here and post rather complex issues about treatment adherence. treatment failure. fears about when to start. fears about their future with HIV, their demise, their looks, the "poison" in the drugs, etc etc etc. Very complex fears about side effects that may not always be justified. People come here hoping to find alternatives or "helpful" additions to HAART treatment - (such as your previously, recently touted Olive Leaf Extract).
Oh, and for everyone who dares to post, there are many others who only read...
And then there are the myriad beliefs about Big Pharma. Some critically aware, some reasonably held but displaced from the political/eonomic realm to the individual treatment, some just casually held conspiracy theories, etc etc etc. And you see where I am going, So then there are the denialists. (And i am not saying you are a denialist, at all!)
And then there are the ones who bemoan the fact that treatment isn't tailored specifically to his/her experience, that we are too often a bunch of cows, pushed around by robotic doctors, funding mechanisms, medical science etc. And believe me, most of us have challenges with this aspect - trying to get something more individual out of a system designed to do the best (in theory, if we are optimistic about humanity) for the largest number of people with a certain limitation of time and budget... Also remember the Hippocratic Oath, so the doctor concerned for any one patient is trained (hopefully) to juggle a lot but still serve the one patient as best as possible.
Anyway before you get upset, I'm not saying YOU represent any specific one of these cohorts. Just thats the context in which your post is read.
I am a teacher and I see parallels to my domain. Teachers, and to lessor extents schools, and then districts, etc etc, going further out, are always trying to accommodate the students who don't slot into the system so comfortably, while juggling the overall goal to keep it all afloat and doing general good.
So maybe the key questions to ask are - can you get your doc onboard and can you get some TDM, in the spirit of reducing risk in your quest and current experiment to reduce your drug intake?
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Looking at the most recent 'modern' drugs (aka caviar drugs) I think the pricing is based on an expected superiority, ease of use, etc and not the amount of API
if a 50 mg Dolutegravir sells for $ 50000 /annum, I expect the manufactuer would/could also charge same amount for 25 mg. I do not see why BigPharma would like to overdose
My doctor once commented that HIV management is at the same time easy and tricky: easy for people who are stable, UD on their first regimen and tricky once resistance comes in
Besides, the OP may want to post the CD4 gains and not only the UD status
The aim of treatment is not only to be VL < 20; but if possible VL < 1; residual replication (aka 2 < VL < 20) is suspected to impair immune system recovery
That being said, I fear that Witch is making a point about dose/cost and I wonder if caviar drugs, allowing faster VL decay, can create situations where one person (covered with insurrance) would spare half of the dose to give or even sell to an other (not covered)
I have read a number of articles / post about people taking less pills (such as FOTO) : the most extreme I have ever read is this: a guy was reporting taking NVP for 2 weeks then Epzicom for 2 weeks and so on...
Not my cup of tea
Cheers
Eric
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Steam heat building. No thermostats. All my apts in NYC were the same.
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Here is dosing study I found on Prezista boosted with Norvir:
http://www.medscape.com/viewarticle/553780_4
Efficacy and Safety of TMC114/ritonavir in Treatment-experienced HIV Patients: 24-week Results of POWER 1
Viral loads < 400 and < 50 copies/ml (Fig. 1b) were achieved by 40 (67%) and 32 (53%) TMC114/r 600/100 mg b.i.d. patients, 42 (69%) and 30 (49%) 400/100 mg b.i.d. patients, 37 (62%) and 29 (48%) 800/100 mg q.d. patients, and 38 (63%) and 26 (43%) 400/100 mg q.d. patients
The usual dose of 600mg Prezista twice daily has viral load suppression efficiency percentages 67% and 53%. The 400 mg dose once daily achieves viral load suppression slightly slower - 63% and 43%. Big Parma again chose the maximal dose in the study (2*600=1200mg/day) when it's obvious the lowest dose (400mg/day)also works albeit slightly slower. The overdosing factor is at least 3.
For someone with already suppressed viral load the low dose will work just as well to keep him/her undetectable. Again no data is published about even lower doses because Big Parma doesn't make difference between the two scenarios of (1) lowering a high initial viral load or (2) keeping someone undetectable.
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I want to strongly advise that no one who reads this stuff takes their meds any other way than prescribed by their doctor . Its ill advised and dangerous what witch is proposing .
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Big Pharma conspiracy! It's like how the Illuminati exploded Paul Walker's car by GPS remote control because he was about to expose hidden birth control pills in Philippine typhoon relief packages and babies would die.
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It is wreckless what you are doing witch. To post such things on here where you have very impressionable people or people that are spending thousands of dollars on treatment trying to save a buck is outrageous. You are little playing with people's lives.
I wouldn't recommend anyone do this even if your dr told you so, it's dangerous to your health and irresponsible of you......
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For someone with already suppressed viral load the low dose will work just as well to keep him/her undetectable. Again no data is published about even lower doses because Big Parma doesn't make difference between the two scenarios of (1) lowering a high initial viral load or (2) keeping someone undetectable.
One thing to keep in mind. Blood plasma viral load is just a proxy that we use to gauge our health and how advanced is our HIV. There are other measures we don't (and can't) take regularly, like the size of viral reservoirs. It is possible that the larger doses do have an affect on that, but it's not being monitored. You could be doing damage in places no one's looking.
More informed people than me could probably add other metrics that you should potentially be monitoring if you want to continue the experiment. I wouldn't advise it personally, but on the other hand, I'm still doing what you might call my food experiment which reduces the amount of bioavailable drug I get by more than half, so I won't throw any stones.
Good luck.
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Witch - why don't you compartmentalise a bit.
Keep your interest in closely listening to the body, herbs, holistic stuff.
Keep your politics and critical study of Big Pharma.
And for your treatment, don't be cowboy, don't shoot yourself in the foot - get a doc onboard, get access to TDM, and so on...
If you are healthy you can fight your chosen big bad guys, save Africa, and whatever else motivates you.
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In the STaR study for Complera - your drug, there were higher treatment failure rates for those with VL 500k+ (READ HIV DRUG RESISTANCE, and the guidelines state for an ENTIRE DRUG CLASS) . I'm not even going to extrapolate at what half dose Complera will do at lower VL.
You shouldn't generalize dose vs. response from other drugs, even within classes. They don't behave the same!
Suffice it to say, playing with doses outside a properly monitored research/trial setting is really playing with the fire that is a virus. One that can burn out your life.
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Almost every study shows, and its logical, that higher doses are more effective at suppressing initial high viral load. The differences between higher and lower doses in all studies I found are not impressive though.
I can't find any studies that compare a high dose to low dose for maintenance of undetectable viral load. There isn't a proof that a lower dose won't work just as well, provided the patient has 100% adherence like myself. My anecdotal experience is a weak proof that it works for me. The fact there aren't studies doesn't prove it doesn't work.
A low dose would be less effective for maintaining UD VL for someone that has no 100% adherence i.e. forgets to take the drug and skips days. In such cases the drug should be overdosed, and most probably that's why Big Pharma always releases the highest tested dose because the majority of population is not 100% adherent.
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Personally I choose to expend my time and effort on pursuits that are more enjoyable and productive.
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a weak proof that it works for me.
Being UD and being 'suppressed' are 2 different things.
If your VL hovers at 15 (for the sake of exemple) then this may impair CD4 recovery, which the OP has not yet fully reached and may take a few years of continous pressure on the virus to achieve full recovery
Perelson's article here
Drug effectiveness explained: the mathematics of antiviral agents for HIV.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3236558/
and
Shen's
A critical subset model provides a conceptual basis for the high antiviral activity of major HIV drugs.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3488347/
may help those who would like to explore the rationale behind ARV dosing, which is not as simple as dosing a sleeping aid.
There are indeed some publications about alternative dosing and even small scale experiments.
Most people would like to decrease the dosing of NRTIs. (therefore mostly of Truvada or Epzicom)
Problem is: if you ever become resistant to Truvada or Epzicom; then, unfortunatly, there are not too many options left
Hope this helps
Hoping people will find means to reduce CNS side effects (which are a known problem with some HAART patients) other than experimenting with ARV dosage.
Eric
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Pardon my ignorance regarding this topic, if one was splitting a pill in half you'd be getting half of that dose. But when that pill has 3 AV's in it (emtricitabine, rilpivirine, and tenofovir) are you actually getting half of all 3 at every dosing? Or, more of one and some of the other with no actual certainty?
I'd be worried...
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Your concerns are well placed. Half a dose does not equate to half efficiency.
It seems to be a little more complicated than that.
Therefore in a COMBO pill, half a pill could mean 75 % less efficiency on one compound and 25% on an other. This is calling for trouble, IMHO
I think we should start sharing tips to get over those CNS effects rather than hazardous experiments.
If there was a (large) clinical trial on lower dosage, I'd be happy to read about.
Don't count on me to enroll, though
I think there has been some reports that show that lowering EFV dosage could lower CNS effects. That does not means one should start cutting Atripla combo pills in pieces...
Hope this helps Eric
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If your VL hovers at 15 (for the sake of exemple) then this may impair CD4 recovery
Or perhaps not (a well-powered study perhaps for us to read showing viral load under 50, under 400, typically impairs CD4 recovery...?). However, the time on treatment point is well made, there's a world of difference doing a cut down combo (or some sort) after 5-7 years on treatment, and doing it straight off/soon after starting. - matt
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Pardon my ignorance regarding this topic, if one was splitting a pill in half you'd be getting half of that dose. But when that pill has 3 AV's in it (emtricitabine, rilpivirine, and tenofovir) are you actually getting half of all 3 at every dosing? Or, more of one and some of the other with no actual certainty?
I'd be worried...
Who cares? We're just making stuff up as we go along.
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Well I'm not going to talk about you, Witch, in the 3rd person. So I am just wondering if the issue may be that you haven't come to terms with being HIV+, really, nor have you accepted science's effective, though less than perfect, solution for HIV+ people.
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You cut your meds in half to remedy your side effects and your side effects did not go away....This is a success to you? Take your meds as prescribed and stop playing with fire, if you develop resistance to truvada it definitely is not worth the gamble.
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Well I'm not going to talk about you, Witch, in the 3rd person. So I am just wondering if the issue may be that you haven't come to terms with being HIV+, really, nor have you accepted science's effective, though less than perfect, solution for HIV+ people.
I've been wondering the same thing.
Ditto on wondering if a half-combo pill always means half of all the components.
Playing with fire indeedy.
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Who cares? We're just making stuff up as we go along.
Literally laughing out loud. :) Thanks for the morning amusement. I kinda think we need a new thread where everything is made up. I'd be 6'2", 170lbs, long flowing blond hair with gorgeous blue eyes and hung like a horse.
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You cut your meds in half to remedy your side effects and your side effects did not go away....This is a success to you? Take your meds as prescribed and stop playing with fire, if you develop resistance to truvada it definitely is not worth the gamble.
As I said clearly in my first post, taking half complera reduced the insomnia, compared to taking the full pill. It's funny how people on this forum give advice in the form of commands ...
You can't develop resistance if your drug dose keeps the virus suppressed. For resistance, the virus needs to multiply and mutate. I suspect most cases of failure are either high viral load (which means lots of mutations per unit time) or non-adherence or both. Neither applies to me.
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As I said clearly in my first post, taking half complera reduced the insomnia, compared to taking the full pill. It's funny how people on this forum give advice in the form of commands ...
You can't develop resistance if your drug dose keeps the virus suppressed. For resistance, the virus needs to multiply and mutate. I suspect most cases of failure are either high viral load (which means lots of mutations per unit time) or non-adherence or both. Neither applies to me.
So you're willing to jeopardize your undetectable status and assume you might still have therapeutic levels of all three drugs in your system in order to mildly reduce your insomnia, but not completely remedy it? I suspect that what you suspect isn't scientific fact.
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Methinks most doctors or pharmacists would consider chopping the pills in half to be "non-adherence"
Big article in the New Yorker a few weeks back about Merck bringing a new sleep drug to market to compete with Ambien. A lot of back & forth between the company and the FDA regarding the appropriate dosage. It certainly isn't a decision that Big Pharma makes unilaterally.
If your goal is to eliminate side effects, it seems like changing meds altogether would be a safer call. What you're doing is unusual and not recommended. It is your life and your body, however. But you really should get your doc onboard.
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The fact there aren't studies doesn't prove it doesn't work.
I suspect most cases of failure are either high viral load (which means lots of mutations per unit time) or non-adherence or both. Neither applies to me.
*shakes head sadly* Modern medicine is littered with therapies where doctors themselves made such arguments. When they got around to doing studies, lo and behold some worked. Some were harmless without benefit. Quite a few turned out to kill patients.
Please, please, please tell me that your doctor knows of your project. Are you in the medical field yourself? If at all possible, you need to know your drug levels to prove the half-dose enough. Otherwise, you're playing a very dangerous guessing game.
Some meds achieve their effects at maximum peak levels. Others achieve their effects at a steady state level. Can you say for sure you know which is more important for each component of Complera?
At the very least, your insurance will consider you noncompliant/nonadherent and at greater risk for not filling your pills correctly.
Do you know the difference between actual suppression and simply being undetectable? Remember the VL only tests the tip of the proverbial iceberg (the actual viral reservoir is much larger. i'm talking brain, gut, lymph nodes, bone marrow). I don't believe the VL level itself is sufficient to test your hypothesis.
All you need is a small population of infected cells with a resistant mutation to be selected out. Then, the breakthrough VL will begin.
Mostly opinion, but most would agree that you're likely allowing more survival of mutants by decreasing the meds. Just enough to encourage resistance selection.