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Author Topic: I start asking myself questions about the meds  (Read 5262 times)

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Offline hiv_positive_BG

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I start asking myself questions about the meds
« on: August 03, 2013, 05:58:12 PM »
Hi, I take Norvir, Reyataz and Kivexa (Epzicom in the US).

I really start asking myself some questions...

Why is the dose of the meds one and the same, when you have less than 200 CD4 cells, as well as when the cells are above 700? Why is the dosage the same for people of different weight as well? And, most of all, is it REALLY needed to take the meds each and every 24 hours? If I feel better, my lab results are good, can't I start taking them once 26, or 28 hours - it's no problem for me to keep up to such schedule?!

I look at the meds packages and I read: Norvir - 100 mg; Reyataz - 300 mg; Kivexa - 300 mg.

Why 100, but not 120?! Why 300, but not 280, or 320?! How could these numbers be so rounded, on one hand, and why should meds be taken every 24 hours, but not, say 26, on the other hand?! I mean, if it was so IMPORTANT to take your dose at the same hour of every 24 hours, why are the meds including such unrefined daily dosages (100, 200, 300 mg, etc.)?!

I'd be grateful, if you've made experiments with taking meds in a bit different schedule, and write here about the results. And let me underline it bold: I DON'T WANT TO STOP TAKING meds, I think I should really take them at an equal interval, but I really don't understand why this interval should be exactly 24 hours for different health conditions - considering CD4s cells and viral load. Thanks in advance for any clarifications!

P.S. You know, that countries pay for the meds, and this is the most secure and predictable payer you could ever have. We should not escape the thought that medical companies MAY want us to take the meds more often, on a more intense schedule, than it's actually needed?!

I'd be grateful if you tell me: if my CD4 cells are above 700, and I start taking my drugs every 28 hours, would that quite assuredly end up in resistance, or not... I've read a research, where 15% of people, who have taken their meds for two years, don't need to take them any more, as the virus is suppressed. And I start asking myself the question: why should the 85% left take their dose each and every 24 hours, but not 28, for example?!

Offline bocker3

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Re: I start asking myself questions about the meds
« Reply #1 on: August 03, 2013, 06:19:49 PM »
Not sure what is behind all this really?  You having an issue with taking your pills?? the side effects too much??  you can always talk to your doctor about different drugs or whether you can/should take them in a different manner.

In general med dosages are based on studies that reflect how much it takes to maintain a therapeutic level of the drug in your system.  This means that the lowest concentration in your system should still be above what was found to be effective for that drug's goal (in this case -- that goal being to suppress HIV in the blood).

Yes, they could fine tune drugs for your body weight -- but that would be very expensive and problematic -- for example --would you need to increase your dose after a nice long cruise vacation because you gained 10 lbs?  Would you need to get on the scale each day and then have the pharmacy create the proper size pill for you for that day??  You see the complexity that your questions would bring in here?  It probably would NOT save money, but increase costs, as the drug companies would have to manufacture a plethora of different doses of each drug.

Typically, med dosing is relayed in a per day cadence because it is a commonly held timeframe that folks can use to build a consistent habit of taking the meds.  Whether it is 1x/day or 2x/day, etc......

Mixing things up like you suggest, like every 26 or every 28 hours would be a huge invitation, for many to develop resistance due to forgotten doses.  No -- you need not be completely strict with the every 24 hrs -- you CAN (depending on the drug you are talking about) sway a bit on either side.

Finally -- your CD4 count has absolutely nothing to do with HIV drugs, dosage, timing etc.  The drugs do not directly impact your CD4s, so their number is irrelevant.  the HIV drugs attack the VIRUS -- of course, decreased virus allows your CD4 count to increase again, but stop the drugs or take them in a sub-optimal way and the virus can rebound and your CD4s will go away again.

So -- there you have it.  Although, I'm still scratching my head trying to understand your thought process here??

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #2 on: August 03, 2013, 06:25:36 PM »
I just feel my blood pressure rises a bit, and that happens often, and I read that Kivexa/Epzicom may be causing it. It's even removed from the recommend drug list in the US in 2013. BUT I don't want to change drugs, and I don't want drugs, that would mess up with my mind. I hear such complains about some drugs. And I'm happy that mine don't cause such troubles. I just want to save myself from heart attack in the near/far future and I start pondering - if my lab results are good, can't I change the schedule a bit.
« Last Edit: August 03, 2013, 06:27:49 PM by hiv_positive_BG »

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #3 on: August 03, 2013, 06:45:03 PM »
Dosage - how many milligrams - and intervals - when? - are not evil plots by Big Pharma to sell HIV drugs.

These protocols are established in clinical trials by drug companies and also researched by medical schools and scientists as well. 

I would guess many protocols for many diseases have the same deal - "one size fits all" because that's what was researched and proven effective.

You are probably correct that the dosage and interval for an individual may not be ideal.  You can probably find a doctor willing to work with you on your concerns about dosage and intervals. 

There are some recent posts in this forum about people successfully decreasing dosages. Or the 5 days on 2 days off scheme. Etc. etc.

Its up to you to research this and make sure you have the doctors and monitoring to see if you can safely do something in these lines.

I read a story about a GP who occasionally uses a very old fashioned dosage and interval protocol for antiobiotics for certain childhood infections. It was small doses and had to be very regularly spaced like every hour or two.  And she (the doc) said this was common decades ago and had fallen out of practice but she found it worked.

So obviously there is space to explore your ideas.  I just don't see it as a plot nor do i understand why you ask so many precise questions about it and you, that none of us can possibly answer.   Like if you will get resistance if you take it every 28 hours instead of every 24.
« Last Edit: August 03, 2013, 06:48:04 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tednlou2

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Re: I start asking myself questions about the meds
« Reply #4 on: August 04, 2013, 12:33:57 AM »
I recently posted about doing a DNA test, to test my enzymes that process medications.  This was done at my pain doc.  They said they are now using this to determine who is a normal metabolizer, a slow metabolizer, and a rapid one.  When I looked up info about it, it said someone who is a rapid may get too much med than they need, which could cause side-effects.  A slow metabolizer may not be getting enough of the med, and may require a higher dose.  It said some meds may not work well for you, at all.

I asked how this would apply to HIV meds, if at all.  Of the responses, it seemed they thought this would not work for HIV meds.  After all, HIV meds are obviously different from a pain med, blood pressure med, etc.  But, I still wonder whether a rapid metabolizer could have more side-effects from their HIV meds, and could get by with a lower dosage, without causing resistance.  But, I am still learning about HIV meds, and I know it would be risky to play around with dosing. 

Perhaps one day, science will be able to determine whether everyone needs the same dosage of a particular regimen.  I mean, especially if you're having a lot of side-effects. 

Offline leatherman

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Re: I start asking myself questions about the meds
« Reply #5 on: August 04, 2013, 01:08:08 AM »
Perhaps one day, science will be able to determine whether everyone needs the same dosage of a particular regimen.
costly, constant therapeutic drug monitoring (http://labtestsonline.org/understanding/analytes/therapeutic-drug/tab/glance) can do this right now.

Clearly age, weight, metabolism, etc could all play a role. After months of needles, labwork, results and a lot of money, you could have your meds perfectly adjusted to weight, metabolism and dosage timing. however forget a dose or change weight and you may very well have some bad consequences to pay because of your now perfect but very unforgiving regimen ;)

Dosages are based upon studies that show that the vast majority of patients at a certain dosage have successful therapy. However, it's not 1992 any more when they are overdosing people on AZT. Meds have been studied and tweaked for 30 yrs to get the most reasonable dosage that works for the most people. Of course not everyone will fall into that majority; but studies have shown incredibly low percentages of people who have major side effects or are unable to reach UD.

I mean, especially if you're having a lot of side-effects.
following up then that only a small minority will have issues, why bother with costly time-consuming TDM? If the side effects are overwhelming or the therapy is unsuccessful, simply switch to a different regimen (with doctor approval of course)
leatherman (aka mIkIE)


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

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #6 on: August 04, 2013, 06:45:48 AM »
Is there any site or statistic, where you could see chart of meds, to which patients have most often developed resistance? I guess that this happens easier with some meds, if you play with the dose, than with others?!

Offline leatherman

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Re: I start asking myself questions about the meds
« Reply #7 on: August 04, 2013, 03:37:26 PM »
Is there any site or statistic, where you could see chart of meds, to which patients have most often developed resistance?
there probably isn't a stat for this because for the most part resistance is caused by PEOPLE not staying properly adherent to their meds, not because of an specific MED.  No med is "easier" to become less effective and result in HIV mutating; it's a problem of patients not remaining properly adherent. Choosing to deviate from the recommended dosages is a pretty sure way - but not a guaranteed way - to allow the virus to mutate and become resistant to someone's current med regime. So since resistance happens because of the patient (the HIV they were infected with was resistant, they went off meds in an improper manner, they were only haphazardly adherent) it's not a matter of which med patients have developed resistance to; but which med people have most often improperly taken.

Theoretically, a person remaining adherent to their regime may never have to change meds.
leatherman (aka mIkIE)


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

Offline mikeyb39

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Re: I start asking myself questions about the meds
« Reply #8 on: August 04, 2013, 04:54:03 PM »
I take something different, but the blessing of my doctor.  I was taking Atripla and it was causing me issues with my feet and etc.  So my doctor decided to experiment with me with a different med basically only taking too versus the standard 3.  I take prezista, norvir, isentress.  Most folks to 3 different meds, but I take only too, don't really count the Norvir as a med, but just a booster.

I've been doing great so far with this, No side effects and Virus is still Undetectable, since the med change my feet no longer are in pain or numb and I have no CNS issues really.

But again this is under doctor supervision. instead of reducing the truvada, he took me off it all together so as to not cause any resistance issues just in case I need to go back to it again in the future.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD

Offline skeebo1969

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Re: I start asking myself questions about the meds
« Reply #9 on: August 04, 2013, 04:56:36 PM »

   I have to admit, I've wondered a time or two why it's one size fits all concerning HIV meds. 
I despise the song Love is in the Air, you should too.

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #10 on: August 05, 2013, 09:13:15 AM »
Well, then do you know if there's any statistics, how many of the HIV positive people, who've started treatment, have become resistant to their medicines at least once in their lifetime?

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #11 on: August 05, 2013, 09:25:15 AM »
You are stuck in a rut.  How would a statistic about HV+ people who have little to nothing in common with your situation, be relevant to you?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #12 on: August 05, 2013, 09:34:48 AM »
I'm planning a holiday in Rio and around Brazil. I'm a little worried about it. I read the state department guidelines for staying safe in Brazil.  I read some other good, proven advice.  But I don't want to follow all those guidelines. I want to walk around freely and engage with anyone, because thats just me, an individual, thats what I enjoy on my holiday. I asked the state department for statistics on what happens to tourists who don't follow the safety rules...  I want the statistics on what happens if I roam freely in the afternoon, and I want the other statistics on what happens if I roam freely after midnight.  What about if I only roam every other day?  Is my age a factor?  What I am wearing?  I want the statistics for the last 10 years. But I am also wondering if they will apply to me because this year there are a lot more police around.  I want....

Maybe a heavy handed or a bit off as an analogy, but you get the drift? 

You can probably get statistics on FOTO, maybe other such new ways of thinking... Are they going to apply to you, and what you want to do? 

http://clinicaltrials.gov/show/NCT00414635
« Last Edit: August 05, 2013, 09:38:39 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #13 on: August 05, 2013, 09:47:00 AM »
I just wonder how often people on HIV drugs get resistant to them. That would in one way or another show me whether the daily dose in a pill is "oversized" or not. If resistance happens in more than, say, 20-30% of the cases, I guess that dosages in pills are quite finely tuned. I believe  that quite a few people are able to keep to a strict schedule. Not to say, that everyone passes through different health and weight conditions, which would have effect on treatment, if doses are really fine tuned. At least there's some logic in it... That's why I wonder if there's any statistics for resistance, as that, indirectly, shows how finely tuned dosages of pills are. Of course, that's generalizing, but any knowledge in life is more or less a generalization :)

P.S. mecch, thanks a lot for showing me clinical studies like FOTO. I'll try to search for results regarding FOTO. But I believe, that taking a pill once every 30 hours, for example, is much better that skipping two whole days... I fear of doing that, to be honest :)

Offline Buckmark

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Re: I start asking myself questions about the meds
« Reply #14 on: August 05, 2013, 10:34:17 AM »
I just wonder how often people on HIV drugs get resistant to them. That would in one way or another show me whether the daily dose in a pill is "oversized" or not.

I'm not sure that adherence / dosing is the only reasons people develop resistance to drugs.  There's still a lot we don't understand about the HIV virus, and about the body's immune system.

That said, I think the reason "one size fits all" dosing is the norm is because it would be prohibitively expensive and complicated to test dosing that is customized to each individual in terms of quantity, time, individual body differences, etc.  Clinical trials would be a nightmare.  Also, it would be exceptionally complex and error-prone for a doctor to keep up with each patient's unique / individual dosing regimen.  Lastly, regular daily dosages are the norm because it helps people remember when to take their meds.  It is probably possible to take them every 28 or 30 hours, but the shifting times would for many people lead to adherence problems (and ironically resistance). 

Personally, I'm just glad there are so many good drug options these days, that are so easy to tolerate (anyone remember liquid Norvir -- barf!!).  The daily dosing encourages adherence. 

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #15 on: August 05, 2013, 11:24:43 AM »
That said, I think the reason "one size fits all" dosing is the norm is because it would be prohibitively expensive and complicated to test dosing that is customized to each individual in terms of quantity, time, individual body differences, etc.  Clinical trials would be a nightmare.  Also, it would be exceptionally complex and error-prone for a doctor to keep up with each patient's unique / individual dosing regimen.  Lastly, regular daily dosages are the norm because it helps people remember when to take their meds. 

this

BG there are some other members here who have some info about reducing dosages, and some kind of monitoring of drug levels in the blood, etc. etc.   I hope they can give you some links to get more at real info about what you are thinking about.  Im just a ram who goes with the herd, thankful that science took us this far. My seroconversion and fast start of ART several years ago, let me find easy trust in the medical establishment and science.  We all gotta pick our battles and how we spend our time.
Its highly unlikely my insurance set up and my doctors - even in rich Switzelrand, - would have much patience with all the time and risks involved in trying to fine tune my meds to my individual situation.  I had combo changes when I needed them and when it improved life back to "normal" feeling.   That's already something. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #16 on: August 05, 2013, 11:29:36 AM »

Why would you want to chain yourself to some precise timing that would obviously come in the middle of when you normally might be sleeping, etc.  Quality of daily routine.  Not having to think about the daily routines involved in staying healthy with HIV.  Why make it all more difficult and risky?

Maybe a dosage reduction, but this whole thing about taking drugs every day a different time, seems like a boondoggle.  Seems obsessive a bit. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Grasshopper

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Re: I start asking myself questions about the meds
« Reply #17 on: August 05, 2013, 11:58:20 AM »
Let's say I'm going to take my meds at 28 hours intervals

start at 06:00 am
day2:   10:00 am
day3:   2:00 pm
day4:   6:00 pm
day5:   10:00 pm
day6:   02:00 am
day7:   06:00 am

No way on earth am I going to be compliant with such a schedule

http://aidsinfo.nih.gov/drugs/314/atazanavir/0/professional
« Last Edit: August 05, 2013, 12:15:42 PM by Grasshopper »

Offline newt

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Re: I start asking myself questions about the meds
« Reply #18 on: August 05, 2013, 04:02:12 PM »
This is an interesting thread, and I have some observations...

First, doses of drugs are mainly decided by dose-finding studies, ie phase 1/2 clinic trial of moderate accuracy using people with little genetic variation. These studies work out the lowest (importantly, cheapest to make, least toxic) dose that will reduce HIV (usually in urban US homeless populations, cos they like the small fee for participation).

Secondly, Norvir boosting doses are guesses, and not well studied. This don't really matter for Norvir is a booster to make other drugs work well, but the upshot here is you can sometime use less Norvir (or sometimes need more) than the standard 100mg (or for some drugs 200mg) dose, and have the same effect/less side effects. This has been studies for some drugs. << the result is not always a Norvir dose reduction tho

Thirdly, even on the approved dose some people will be underdosed because of genetics affecting how they process a particular drug.

Fourthly, many dose reductions are possible, eg the widely reported 400mg efavirenz that has just come to light, and FOTO.

Fifthly, who wants to take a drug at odd interval like 28 hours?

Sixthly, if the packet says once a day it means once a day, not every 24 hrs. For nearly everyone on a modern combination with no resistance, this is sufficient...

...because, seventhly, drugs reach what is called steady state in the body, which means the dose you take each day is topping them up a little, but they are basically present at a consistent level. And for modern drugs this lasts a long time. For some drugs this means the flexibility in dosing is huge, life +5 days for efavirenz in 80%+ of people, + 2 days for Prezista in 80%+ of people. This is why FOTO works. But, not always. For some folk this is not an option.

Eighthly, the guidelines ie 3 drugs from at least 2 classes, are there cos that's what studies suggest works at a population level, but this is an old forumla from the days of less effective drugs. It's prob a good idea when first starting out. Later, ie when undetectable, modern drugs will allow cut down combos ie 2 drugs from 2 classes for many people if they are the right drugs << like my cut down boosted Prezista and FTC.

Ninthly and finally, the way to determine a person's individual therapeutic dose of a drug is called therapeutic drug monitoring, a standard, if perhaps not always insurance friendly, test. << free in the UK. This measures the level of drugs in your body at the start and end of a dose. It allows personal, empirical dose adjustments (up/down as appropriate).

No-one wants resistance as the result of a less drugs is better but ineffective experiement, but approached sensibly, often, less drugs is possible. Which is good in my book.

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

Offline bocker3

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Re: I start asking myself questions about the meds
« Reply #19 on: August 05, 2013, 05:26:05 PM »
This is an interesting thread, and I have some observations...
Ninthly and finally, the way to determine a person's individual therapeutic dose of a drug is called therapeutic drug monitoring, a standard, if perhaps not always insurance friendly, test. << free in the UK. This measures the level of drugs in your body at the start and end of a dose. It allows personal, empirical dose adjustments (up/down as appropriate).

A good point -- Therapeutic Drug Monitoring (TDM) is available, but it is very expensive for most drugs (I used to do it quite often when I worked in a lab for things like Theophylline).  And while it is "free" to patients in the UK (and other countries), it is still very expensive for the NHS.  Given a finite number of dollars (or pounds or euros, etc) for health care, one must ask is the benefit worth the cost.  Given the success of HIV drugs as prescribed today, I suspect the answer would be "No".

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #20 on: August 06, 2013, 04:49:51 PM »
newt, thanks a lot for your very informative and detailed answer.

The only results of a FOTO study I found are posted here: http://clinicaltrials.gov/ct2/show/NCT00414635?term=FOTO&rank=1

Do you know any link, where I could read about Ritonavir, Atazanavir, Abacavir and Lamivudine?

Currently I take the following every day:

300mg Atazanavir /Reyataz/, boosted with 100mg Ritonavir /Norvir/
+
600mg Abacavir and 300mg Lamivudine /Kivexa/

That's going on for 8 months now. My stomach's a mess now and then, I have sudden "rushes" of diarrhea.

Sometimes my fingers ache and I feel they get in a way "paralyzed"

Plus I feel my heart beating faster than the normal...

I think that I take too much medicines every day!

You're right, that the most important thing is to keep the medication concentration high enough in your blood. And I guess it's not so cool to take pills each and every 28 hours.

That's why I think of the following scheme:
1 day 300mg Atazanavir + 100mg Ritonavir
1 day 300mg Atazanavir + 100mg Atazanavir + 600mg Abacavir + 300mg Lamivudine /that's what I take now/
1 day  600mg Abacavir + 300mg Lamivudine

Then that scheme gets repeated over and over, and actually there's no day left without HIV medication. You say, that patients, who are "long term users", may suffice with only one double combination.

The problem is, my "experiment" can't be tracked by doctors. We have too many patients in our country and they can't pay you too specific of attention. I should be grateful there are not that bad medicines for free, at least.

They test you each fourth month and that's it. So I could understand the results of my experiment in four month's time, as they've just blood tested me.

So, do you think that such a scheme, which would spare 1/3 of the medicines I take, looks good enough? I like my meds, they keep my mind/brain clear, but I feel I get "battered" of so much daily pills...

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #21 on: August 06, 2013, 07:42:07 PM »
Do you know the full list of drugs available to you in your country? (besides these you are currently taking.)  I think Kivexa can be hard on the digestive tract.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #22 on: August 06, 2013, 07:56:10 PM »
Yes, we have Еpivir, Emtriva, Viread, Retrovir, Videx EC, Kivexa, Combivir, Trizivir, Stocrin, Viramune, Intelence, Kaletra, Telzir, Invirase, Reyataz, Prezista, Norvir, Fuzeon, Celsentri, Isentress. That's all! I don't know if it's much or not quite a big choice. I don't know if they've given me one of the best possible combinations in our country.. so I should be careful not to lose the chance of taking it :( But I know that today I've got a sudden bout of diarrhea while I was walking along a road... it was a very unpleasant situation :( But I fear that they've given me almost the best they could currently give me... Or maybe I'm wrong?

Offline newt

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Re: I start asking myself questions about the meds
« Reply #23 on: August 06, 2013, 08:19:34 PM »
In short, atazanavir can't be cut down, studies to date have been poor in terms of results.

But you can do 400mg atazanavir with no ritonavir.

And many other combos.

If your combo is causing you grief, you need to find a way to switch. << the heart stuff need taking seriously/investigation.

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

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #24 on: August 06, 2013, 08:38:12 PM »
Intelence and Isentress caused me no digestive issues.
Rezataz + Norvir - yes a little bit loose.
I was allergic to Intelence but then Isentress came along. Its perfect, at least for me. Isentress and Truvada.  Truvada is emtricitabine and tenofovir.
Thats a good list of drugs for your country! If you can get a combo switch, you might start feeling well again, and some of these concerns about over medication could be set aside.  As people have said, and as you have confirmed as well, its not so easy to get very individualised attention toward the goal of cutting dosages.  You really have to make a point to push for a combo change, telling the doc your quality of life is being seriously effected. 

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #25 on: August 06, 2013, 08:51:00 PM »
mecch and newt, sincerely - thank you for paying attention to my problems. You know, one always fears of the "unknown" and I think that I may feel worse from a different combination.

newt - what do you mean by "atazanavir can't be cut down"? If I take 2/3 of the monthly dose, do you think that would cause problems (2 days on, 1 - off)? I don't intend of stopping it, just taking the 600mg Abacavir and 300mg Lamivudine /Kivexa/ pill 2 of every 3 days. If you think I'd rather not do it, then I'll try taking all my pills each and every 28 hours - just to check whether I'd feel better.

Offline leatherman

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Re: I start asking myself questions about the meds
« Reply #26 on: August 06, 2013, 09:44:35 PM »
I'll try taking all my pills each and every 28 hours
may I ask why you keep mentioning this seemingly arbitrary time measurement of 28 hours? what not stick with once a day (ie one time in every 24 hr period; the time it takes the earth to turn 1 revolution)? What benefit comes from adding an extra 4 hours and creating a very confusing dosing schedule?

I don't remember if you've already explained; but have you always been taking your meds on this already odd schedule you're using (listed in a previous post)? Did you ever take your meds as prescribed? And if so, did you have side-effects then? and more or less now on this adjusted dosage schedule you are currently using?

thank you in advance for any answers you care to give. I'm just trying to understand why you are trying so hard to make confusing schedules of taking varying amounts of meds. I understand you're having some side effects; but it seems rather than making your dosing schedule harder to manage (and thus running the risk of losing adherence), it would be easier to deal with the side effects (lots of daily immodium for the diarrhea) or change to another regimen.

best of luck working out all your issues ;)
leatherman (aka mIkIE)


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Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #27 on: August 07, 2013, 05:58:34 AM »
Hi leatherman, I work from home for now and there's no problem for me to just use alarm clock and drink my pills whenever needed. I guess, if I use the 28 hours scheme, I could drink a pill in 6 - 7 AM, if I have to do so in 2 AM, for example. And yes, currently I'm keeping strictly to the 24 hours scheme. At the moment I'm writing this I'm feeling pretty nice and no side effects whatsoever. But in 30-40% of time one or another disruption is present, although not in any larger scale. I see there are other not so bad medicines in my country, but, as everything is personal, I don't want to change stuff, as my lab results are good, and after all that's most important. Plus I don't have mind problems, which is also very important for me. But I weight 70 kg, and I keep thinking that these meds should be suitable for someone weighting 100 kg too, for example. And I start asking myself, can't I lower the dose and even try to lose weight even a bit more... Just in order to decrease heart/diarrhea problems. And - I don't want to use more and more meds due to HIV meds... This looks like a vicious circle to me.

Offline Grasshopper

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Re: I start asking myself questions about the meds
« Reply #28 on: August 07, 2013, 08:01:20 AM »
but, as everything is personal, I don't want to change stuff, as my lab results are good, and after all that's most important.

You are so wrong; there are also other issues that are important too...like your cardiac and gastrointestinal issues.

There are other cardiac and gastrointestinal friendly meds out there !

You should address these issues with your ID doctor, and let him evaluate and advise. With these meds, one should not be "playing doctor". You obviously have no clue how serious the consequences can be.... literally biting yourself in the ass.

From what you have written, I am under the impression that you are not well versed at all on the subject at matter.

In the link I provided earlier, it's mentioned about removing Ritonavir when having (mild) cardiac issues...again : consult with your doctor !

Sorry if I sound harsh, but only to warn that you are "playing" with fire.

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #29 on: August 07, 2013, 08:36:36 AM »
OK... If I continue feeling heart discomfort I'll ask the doctors to remove Norvir and make Reyataz 2 X 200mg instead of 2X150mg, right? I don't know what to do with diarrhea... every day, about 2 hours after I've swallowed the Kivexa pill, I know that I'll be in the WC... But I've read other people complaining about that too, yet they don't act "childish", wanting to have a change of meds. I really fear some medicine would start messing with my mind, starting to forget now and then, etc., I've heard such stories. I prefer dying of heart attack than becoming dumb :(

OK for now I think of taking my pills each and every 26 hours and take a dose in the morning, if 26th hour coincides with sleeping... I guess that's good enough an experiment for now, and if problems continue, I'll talk to doctors... OK, there is one more cool combination in my country, but if I start whining around in another half a year, what I'd do then?! I think that changing the 24 hours routine is the best I could do for now, and I won't alter it that much.

Another option I'm thinking about - skipping meds every Sunday? That would be 26 pills, instead of 30 every month.. but I doubt it would help much.

Online Jeff G

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Re: I start asking myself questions about the meds
« Reply #30 on: August 07, 2013, 08:54:22 AM »
I guess I'm simply having problems understanding why you are unwilling to change your meds and see it a childish for others to do so but yet you are changing your meds yourself to something far more complicated and risky . The way I see it you ARE changing your meds and you are taking on risk at doing so . Trying a new regime in order to avoid side effects has far fewer risk than your current plan . If you go off your current meds cold turkey to try another regimen you can avoid the risk of resistance issues and return to the old regimen without harm if it doesn't work out .   

You seem to be determined to do it this way but in my experience it seems to me you are ignoring good advice from your doctors and the forum . I hope for your sake your plan doesn't come back to bite you .     

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #31 on: August 07, 2013, 09:16:38 AM »
My hunch is that a combo change WOULD help with your gastro issues.  The meds I recommended ARE, arguably, "gentler" then the ones you are on.  Don't be afraid of feeling worse.  Your gastro issues are NOT acceptable. Be strong about finding a solution.   Don't be a cowboy.  Find and work with a doctor on this.

I am wondering, from the way you write, the ideas about treatment, and the description of your life situation, if you are obsessive compulsive.  At least, if not that, then too isolated, at home, not with a caring doctor. 

My opinion, and I don't know you obviously, is that you are trying to control far too much, and based on incomplete information, and fears.  You're going in circles on this topic.  Find a good doc, explain your side effects, and ask the doc to work towards a solution.  Really, count your blessings you have that list of meds in your country.  Count your blessings you have whatever work it is you do.  Your friends, your family, your life.  Do what you are set up to do and enjoy.  Bring in experts when there are problems.   You wouldn't try to solve a legal issue on your own, based on fear and misinformation.  Right? You'd call a lawyer.   Etc. etc.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #32 on: August 07, 2013, 09:23:38 AM »
Well, honestly I don't think there's big difference between 24 and 26 hours.. I'll try to cut my pills with 4-5 out of 30, no more. I guess quite a few people do so, just because they forget to take a dose now and then. I didn't want to do it, but let's mention another factor - I always fear that I could be left without pills and you're left on your country's good will (my country is not very stable and prosperous) in order to support you with pills. The fact that you don't depend on yourself, but on the "good will" of politicians, medical budgets, lack or war, etc, makes me subconsciously want to build up some reserve.

Just to mention a fact: due to a challenged auction (or maybe public contract is the right term), viral load is not measured in the whole country since 1st of April. As far as I know they hold the blood tests frozen, until the new public contract procedure, that's already started, has been successfully finished. SO I don't know what my viral load is, from my last two tests!! That makes me nervous and start thinking about whether I'd have meds all the time, as well.

But anyway, that's just a secondary reason, health's at first place. I really don't think it would be problem skipping 4-5 pills out of 30. There are people that weight more than me and that have CD4 count way lower than mine... I've really decided to change the scheme a bit, just because I feel overdosed! If you take 27000 mg of something a month, and you fell some kind of discomfort, and that's a standard dose, I don't see why 23400 mg dose a month would be such a big problem?

P.S. mecch, you're generally right, thanks for the advice. The problem is, all doctors here are so busy. I don't think I feel that worse, in order to make then take over my case...... But thanks, anyway..........

Offline wolfter

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Re: I start asking myself questions about the meds
« Reply #33 on: August 07, 2013, 09:28:45 AM »
Since almost every one of your posts here have centered around this treatment combo, I'd suggest consulting with your doctor. 
« Last Edit: August 07, 2013, 09:49:02 AM by wolfter »
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Online Jeff G

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Re: I start asking myself questions about the meds
« Reply #34 on: August 07, 2013, 09:45:06 AM »
The fact that you do not have access to viral load monitoring on a consistent basis is all the more reason to not experiment , huge red flag .

I hope you understand that the advice in this thread is offered in good faith and out of concern for your well being . I urge you to reread this thread and consider that you have been gifted with many years of collective wisdom from the forum .

I have lived with HIV for 30 years and still learn a thing or two every week from being here . I have learned to give considerable weight to advice given , especially if I'm being told the same thing by many .

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #35 on: August 07, 2013, 09:57:47 AM »
OK Jeff G, thanks for wise advising me, I'm thinking about it. I'd just want to ask something: is HIV meds resistance for life? I mean, if you switch to another combo for a year or two, is there chance for the combo you've become resistant to, to start working again after given period?

Offline mecch

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Re: I start asking myself questions about the meds
« Reply #36 on: August 07, 2013, 10:00:10 AM »
Well thanks for sharing all that context information.

In fact, I was drinking a coffee and was heading back to the forum wanted to ask some questions, which you've already answered!

Let me ask you a bit more?  How does it work seeing a doctor for everything BUT hiv, in your country? 

Does one have a "GP" - general practitioner - "family doctor" who one sees when sick? 

Its just that your gastro issues need addressing.  Now.  Even a GP can address them somewhat, and also might be helpful for the future, permanent solution.

I was sort of wondering if the way you are plugged into the treatment for HIV - leaves you the message that its by the medical establishments / govt's "good grace" or "charity", or whatever.  So I can appreciate that it may not be easy to get specific attention for HIV - if its 4x a year, max, and "be thankful for that".  (However, don't think its so unique to your country - its pretty widespread!)   Plus, you add in the current contract situation, all these stupid cruel games govt can play causing such anxiety.... 

But, can you get in to see generalist doctors, and start discussing the gastro issues??? 

A good generalist who cares about his/her own service to patients, will try to help you with the gastro issues - even if they can't get involved in an HIV antiviral combo change.  But you might also get lucky and the generalist can be the way "in" to eventually be on the "list", or whatever, for the combo change.

Its impressive that your country has Isentress on the list of available meds..  Your faith in your current meds is odd, and also inconsistent.  Since they are giving you side effects.  On the one hand, you think they are destroying you, and want to reduce them, on the other hand, you won't consider a change.... hmmm....
 
You haven't been HIV+ all that long, so believe me, its not just your country's docs who don't like to rock the boat very fast when starting treatment.  There are plenty of docs around the world who will sort of "push" or pressure the patient to remain on a combo despite side effects.  There are sound medical reasons for this, but also there are financial considerations, and who knows what else.  Its not ideal.

The idea of living well with HIV is to be shrewd, strategic as a patient to get the best possible attention.  It is NOT whining, it is not a sign of weakness, it is NOT NOT selfish, to try to bring your quality of life back to normal, on meds... 

You must be polite, but assertive, play games, be a fox, and slip and slide your way to get what you need.  From what you describe, you are making a mistake thinking the system is failing you.  In a sense, it is, because you have these side effects.  But on the other hand, the solution may not be, at this time, so early, cowboy adventures and experiments. 

The solution could be as quick as a combo change, thought it may NOT be easy to get that.  You must try. 

And the solution means you need to find a doctor, who takes patient care seriously, who is going to make sure you are not taking counterproductive steps on your own. This does not need to be an HIV expert....  But you do need a doctor guiding you, this is CLEAR, my dear.
« Last Edit: August 07, 2013, 10:03:34 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online Jeff G

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Re: I start asking myself questions about the meds
« Reply #37 on: August 07, 2013, 10:04:29 AM »
OK Jeff G, thanks for wise advising me, I'm thinking about it. I'd just want to ask something: is HIV meds resistance for life? I mean, if you switch to another combo for a year or two, is there chance for the combo you've become resistant to, to start working again after given period?

No ... if you become resistant to meds its for life and a very serious concern .
You can become resistant to a whole class of meds and that's big trouble if you ever need them again . Your doctors and the forum are concerned for that very reason and your doctor can let you try another combo without risk of resistance becoming an issue .


Offline mecch

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Re: I start asking myself questions about the meds
« Reply #38 on: August 07, 2013, 10:15:57 AM »
I want to tell you two adages I learned growing up in the USA.  They have helped me find solutions when faced with huge obstacles, and especially bureaucracies and limited access to what I wanted. 
1) "The squeaky wheel gets the grease."
2) "You catch more flies with honey than vinegar."

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #39 on: August 07, 2013, 10:39:32 AM »
mecch, thanks for giving me wider view on HIV "battles", patients vs the system... I have a GP, the curious fact is, I have not seen him... They've told me, that he doesn't mind having HIV patients on his list... so I enrolled (it was just before Christmas and he was on vacation). I wanted to escape my family GP, due to any gossip possibilities...

Well, when I go to the hospital for tests and meds, I see new patients, who are weak, I see how full doctor schedules are, I see other people, who take medications like me. And when I compare myself to all these people, I actually realize how fine I am. And maybe, due to the fact, that I work alone from home and not among other people, makes me more obsessive than I really have a point in being.

My stomach doesn't ache, I just have diarrhea now and then. Blood count, hemoglobin, erythrocytes, hematocrit, leukocytes, morphology, blood sugar, cholesterol, triglyceride, creatine, sediments, CD4, CD8, viral load - all this gets tested and my docs say results are good. I wonder, is there anything specific I should pay attention to, related to stomach issues and heart problems? I doubt that all these figures would look good and in norms, if I'm about to have stomach/heart problems. And I don't know what stomach tests it's good to do now and then, in order to check whether meds are doing harm.

P.S. mecch, thanks for your last reply, you've put a smile on my face, really :) And that's working not only in the US, I can assure you :) I would add - "Where there's a will, there's a way" ;)

Offline Grasshopper

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Re: I start asking myself questions about the meds
« Reply #40 on: August 07, 2013, 10:49:16 AM »
For your stomach you can try eating (more) yogurt, add more fiber to your diet and perhaps Imodium.

You can find a lot of info on this site, or just Google

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #41 on: August 07, 2013, 10:55:14 AM »
Thanks a lot Grasshopper, I eat yogurt every day.. guess that helps for not getting even more serious issues, for now.

Online Jeff G

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Re: I start asking myself questions about the meds
« Reply #42 on: August 07, 2013, 11:03:43 AM »
Here's a link to our lesson on diarrhea .

http://www.aidsmeds.com/articles/Nausea_4857.shtml

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #43 on: August 07, 2013, 06:25:55 PM »
Thanks a lot for all the replies, if I knew there's a site called aidsmap, which contains a section "Resistance" for each and every antiretroviral drug, I would spare all the writing... Seems like the combination I'm using needs quite a few mutations, in order to stop working. That doesn't mean I'm about to cut 1/3 or more of my pills, yet it seems that resistance occurs on low levels, if I consult with this article as well ... http://www.aidsmap.com/Big-falls-in-prevalence-of-protease-inhibitor-and-triple-class-resistance/page/2080135/

"By 2010, however, dual-class resistance profiles had changed significantly. Resistance to NRTIs and NNRTIs was evident in 70% of samples; protease inhibitor and NRTI resistance in 24%; and protease inhibitor and NNRTI resistance in 7%."

As far as I understand, the statistics include people, who have treatment history. So, presumably, part of the 24% include people, who've had some kind of resistance already due to older, worse meds.

I also googled "site:http://forums.poz.com/ resistance" and read all the topics posted in the last two years. I didn't see anyone complaining they've become resistant, because they've cut their pills with one pill a week, or so. Some even do it on purpose, in order to build up a reserve.... However, everything is individual and it's best to play safe, if you feel well enough.

Offline newt

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Re: I start asking myself questions about the meds
« Reply #44 on: August 07, 2013, 07:55:24 PM »
1. The side effects on the stomach will not be solved by an odd dosing schedule, they are most likely to do with the ritonavir.

2. Atazanavir has a 29 hr dosing window, and 3TC a 24-36 hour dosing window, so by extending your dosing period/taking days off you risk resistance.

3. Why is different drugs necessarily worse?

4. Side effects are best dealt with by switching. All modern combos work as well as each other, so side effects is perhaps the 6 million dollar question. If it's broke, fix it. Your combo sounds broke and is tying you in calendar knots, potentialy.

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

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #45 on: August 07, 2013, 08:16:46 PM »
2. Atazanavir has a 29 hr dosing window, and 3TC a 24-36 hour dosing window, so by extending your dosing period/taking days off you risk resistance.
- matt
[/font]
OK, so if I use the 26 hour dosing period, that would generally be a safe strategy? Can I, please, ask you to show me where I could read such exact numbers  ::) That's really important and useful information. 

Now I also see there's a brand new study, but you have to pay for full access to the text. The topic however is "A Maintenance Dose of Atazanavir/Ritonavir 200/100 mg Once Daily Is Effective in Virologically Suppressed HIV-1–Infected Patients"http://journals.lww.com/jaids/Citation/2013/06010/A_Maintenance_Dose_of_Atazanavir_Ritonavir_200_100.27.aspx

Has anyone read that study? As far as I understand, they prove one could even do well without the Kivexa pill?! I also read, that Reyataz + Norvir specifically work well with Kivexa/Epzicom. Reyataz + Norvir help Kivexa/Epzicom remain efficient, even if you've got more virus mutations.

P.S. What do you mean exactly by a "dosing window"? You should take a pill every 24-36 hours, or you have as much as 24-36 hours after the moment you should have taken it, if you were strict? Or, in other words, that makes it 24 hours plus another 24-36 hours, in the worst case?
« Last Edit: August 07, 2013, 08:21:05 PM by hiv_positive_BG »

Offline bocker3

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Re: I start asking myself questions about the meds
« Reply #46 on: August 07, 2013, 08:21:23 PM »

But anyway, that's just a secondary reason, health's at first place. I really don't think it would be problem skipping 4-5 pills out of 30. There are people that weight more than me and that have CD4 count way lower than mine... I've really decided to change the scheme a bit, just because I feel overdosed! If you take 27000 mg of something a month, and you fell some kind of discomfort, and that's a standard dose, I don't see why 23400 mg dose a month would be such a big problem?

Ok -- this paragraph is one of the biggest red flags for me -- pointing to the fact that you are not fully informed and/or being logical.

For instance --

missing 4 of 30 doses puts you at less than 87% adherence -- very bad -- should be 95% or better.

you are again talking about your CD4 levels -- which have nothing directly to do with your medications.  your meds impact the virus NOT THE CD4 CELLS.

You talk about "monthly doses" -- this makes no sense -- you take pills daily to maintain a consistent level in your blood.  If you take the same number of pills but do it every 3rd day instead of every day, you end up with the same "monthly dose", but you do not maintain a consistent level of drug in your system.  Therefore, you risk resistance.

I am sure you mean well -- but unless you have a medical degree (and your posts clearly indicate you do not), then PLEASE do not play doctor.  The meds today really should allow you to live a fairly normal life -- if you take them as needed to control your virus.  If one med or group of meds cause side effects that are unbearable, then change the meds.  I know you fear cognitive issues -- I'm not aware of any meds, besides Sustiva, that has any real history of this (someone correct me if I'm wrong) -- so don't switch to that one.

Please, take the barest minimum advice and don't play doctor -- talk to your doctor, openly, honestly and completely.  Your irrational fears may just be your undoing.......

Hugs,
Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline bocker3

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Re: I start asking myself questions about the meds
« Reply #47 on: August 07, 2013, 08:24:18 PM »
OK, so if I use the 26 hour dosing period, that would generally be a safe strategy? Can I, please, ask you to show me where I could read such exact numbers  ::) That's really important and useful information. 

Now I also see there's a brand new study, but you have to pay for full access to the text. The topic however is "A Maintenance Dose of Atazanavir/Ritonavir 200/100 mg Once Daily Is Effective in Virologically Suppressed HIV-1–Infected Patients"http://journals.lww.com/jaids/Citation/2013/06010/A_Maintenance_Dose_of_Atazanavir_Ritonavir_200_100.27.aspx

Has anyone read that study? As far as I understand, they prove one could even do well without the Kivexa pill?! I also read, that Reyataz + Norvir specifically work well with Kivexa/Epzicom. Reyataz + Norvir help Kivexa/Epzicom remain efficient, even if you've got more virus mutations.

P.S. What do you mean exactly by a "dosing window"? You should take a pill every 24-36 hours, or you have as much as 24-36 hours after the moment you should have taken it, if you were strict? Or, in other words, that makes it 24 hours plus another 24-36 hours, in the worst case?

OMG -- you are picking and choosing info that seems to line up to your plans and avoiding everything that runs counter to it.  Why, on earth, did you bother to ask for advice if you have already decided on the answer??

I wish you well, but until you address this unhealthy fear of change you are putting yourself in mortal danger.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #48 on: August 07, 2013, 08:35:55 PM »
bocker3, first of all, I know, that viral load is the most important thing. The problem is, that, as I've noted some posts above, I don't have recent data of it... it does not depend on me! I hope to have such data soon.

But let me ask you something. Who's happier - the one who spends all the money they've got, or those who put something in reserve? I HATE having only 3-4 pills in reserve, plus, sometimes I really feel overdosed. I think my mental condition would be better - and that's in a way related, if I know, that I have provisions for a month or two.

Secondly, I don't want to be a lamb. The more you ask, the more information from different sources you gather. You see, I've quoted a research, and I've given a JAIDS Journal of Acquired Immune Deficiency Syndromes link, which is not a gossip site, right?! Doctors can NEVER share information, that would be endangering your health even with 1%. I just want to know the different aspects. If lower dose would put me at a 10% risk, I may be willing to take that risk. But doctors SHOULD and GIVE only information, that would keep you 100% safe. And that's why I'm asking and writing here, because I want to make an informed choice. Guess that's what forums are about?!

Online Jeff G

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Re: I start asking myself questions about the meds
« Reply #49 on: August 07, 2013, 08:36:39 PM »
Your irrational fears may just be your undoing.......



That is exactly what I fear when I read threads like this . This is a classic case of a newly diagnosed person suffering med anxiety . The sad thing is this most likely will not end well if he presses on with his plans and ignores his doctor and the scores of almost identical warnings we have heaped on here .

This reply is not for the OP , its a warning for others who may be tempted to make the mistake of thinking there is a shred of good in the OP's idea .   

We have done all we can do . 

 


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