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Author Topic: I start asking myself questions about the meds  (Read 6500 times)

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Offline bocker3

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Re: I start asking myself questions about the meds
« Reply #50 on: August 07, 2013, 08:52:13 PM »
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.

I understand the desire to have a reserve -- I have built a 9 month one.  I did it by refilling my Rx at the earliest moment, not by skipping doses.  I also have to, I am afraid, question whether this is a sudden rationalization you have come to in order to justify your desire to take fewer pills in a month.  I say that because you have not mentioned this until now.

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?!

But you are being a lamb -- one possibly being led by yourself to the slaughter.
I think that you SHOULD learn more - -you SHOULD question -- you SHOULD make suggestions to your doctors.  What you should NOT do, is play doctor.  Doctors are far more capable of being impartial when giving you info because they aren't tied emotionally to your condition -- like you are.

Studies talk about POPULATIONS, not INDIVIDUALS.  Being informed is great -- but not if it is so you can do what ever you think is best without the professional guidance of your physician.  Listen, my doc wanted to put me a combo that I didn't want to be on -- I told him my concerns and my desires, he ultimately agreed that this would be OK.  I got what I wanted -- but I got it with his blessing, even if he still thought his way might have been better.

Anyway -- it seems clear that you are going to do as you wish, so I will bow out here.  The fact that you are ignoring the wisdom of people who have survived far longer than you with this virus speaks volumes to the current state of your mind. 

I truly wish you well.

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 mitch777

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Re: I start asking myself questions about the meds
« Reply #51 on: August 07, 2013, 08:54:16 PM »

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 .

Read this ^10 times, please. :)

edited to add: :)
« Last Edit: August 07, 2013, 08:58:16 PM by mitch777 »
32 years hiv+ (oct. 2013) with a curtsy.

Online mecch

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Re: I start asking myself questions about the meds
« Reply #52 on: August 07, 2013, 08:55:12 PM »
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

This.

As i suggested HIV.pos.BG - i think you are obsessing - your thinking is circling in on itself, over and over. You want a certain outcome and you aren't factoring important stuff in the consideration. 

You are dumping stuff from one consideration, into another.  YES, it sucks you don't have a reserve of meds.  But that doesn't mean you trash effectively controlled viral load, AND, risk a resistance to a class of meds, to get a reserve.  Its two different challenges.  Two different things to solve. 

You are dumping far too much into this plan of yours. 

I say this with affection and concern - you need to get to see that generalist of yours.  Lay it out.  You need to work toward a solution to find a way to change meds.  If the world or your country crashes tomorrow and you have no reserve, OK that sucks.  But, do you know that there are ways to stop ALL meds and have no resistance, until you can get back onto a steady supply again. Yes, its true. So you are not seeing the big picture, just circling around the things that concern you immediately.

I also think you should stop reading all those research journals, get back to your daily life - do your job, and make a game plan to solve the real problems.  Take care of the diarrhoea as best as possible right away. Find a doc who will help you change combos.  Ask other people in Bulgaria how they build up reserves.  etc 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 #53 on: August 07, 2013, 09:09:24 PM »
OK, thanks to you all for the replies, thank you mecch, Mike, Matt and Jeff... I actually have money in my bank account to buy the supplies for a year ahead even. I really think maybe my life sucks in way, but on the other hand, one wants to have things under their control, not just be "a chem bin", take same stuff over and over again, each and every 24 hours, like a robot... I really hate that situation. I want to make MY plan, I want to put some mind in all that happens.

After all, let's return to the original post - all the dosages are soo rounded numbers, in a way. 100mg, 200mg, 300, bla-bla. Some people weight 60 kg, some 120, they all get the same, they all feel healthy. I guess I really should ask long-term meds users, or "survivors", what they actually do.

But I just have two more concrete questions - because I want to be informed - has anyone read the Lanzafame M, Lattuada E, Rigo F, Vento S study ( "A Maintenance Dose of Atazanavir/Ritonavir 200/100 mg Once Daily Is Effective in Virologically Suppressed HIV-1–Infected Patients"), and I want to ask Matt where he reads about  "Atazanavir has a 29 hr dosing window, and 3TC a 24-36 hour dosing window"... :(

Online mecch

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Re: I start asking myself questions about the meds
« Reply #54 on: August 07, 2013, 09:38:56 PM »
You've stated you realise you need drugs.  This is a basic fact of going forward, living well with HIV.  You have to come to grips with taking drugs everyday for many years going forward, until the next revolution in treatment. There is no way around this.

Your ambivalence about this isn't unusual. Your game playing about decreasing dosages, minutely adjusting timing, etc, is NOT going to solve the ambivalence. Quite the reverse. It will feed it.  With false sense of control.

Get on the drugs that dont cause you side effects, and put your energy into more constructive actions and interests in your life.

If you are lucky, you'll get a doc who can help you safely, eventually, maybe, if its right for your body and numbers and situation, figure out this dosage thing you are fascinated about.  But don't kid yourself. 

There are many health challenges that lead to people taking drugs everyday, for years and years. Until a treatment revolution...  Deal with it. Join the club.

Put your mind on getting ahead in your job. Go get another diploma.  I dont even remember if you are a guy or woman, straight or gay.  Get a lover.  Read some great books.  Develop a new talent.  Make a family.  Drugs make all that possible. They are not here to obsess over.  Thank your good fortune you have them (there are still too many people who do not, or have bad old ones, in this world.) Move on.


« Last Edit: August 07, 2013, 09:42:24 PM 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 #55 on: August 07, 2013, 09:53:07 PM »
I want to ask everyone advising me, how should I interpret studies like this one:

https://www.ncbi.nlm.nih.gov/m/pubmed/22566588/?i=6&from=/20595906/related

"Ritonavir boosting dose reduction from 100 to 50 mg does not change the atazanavir steady-state exposure in healthy volunteers."

...
CONCLUSIONS: In spite of higher exposure to ritonavir with 100 mg, atazanavir exposure was equivalent; the lipid profile was better under the lower booster dose (50 mg).

And I want to ask you something more: are you sure that all doctors in all countries know and/or follow the most recent data, which appears?! And don't you know, that, even if they know such stuff, there are NATIONAL PLANS AND GUIDELINES, which they have to follow..... First line meds should be such and such, second line - another, etc. And most of all - these drugs are free for patients. So docs should give you the cheaper combination with the least side effects, not the best one, which may cost twice the price :(

P.S. mecch, I know you're right, but getting on with one's life is harder than playing with meds :( That's the naked truth. You see, I find myself someone, who wants to escape the common practice and just make an informed step ahead. It's true I also have these heart disruptions... But, to tell you the truth, I don't even have a personal doctor... You just go in the hospital department, at a particular scheduled hour, there's one of the ~10 docs working for the department, they ask you whether you fell OK, and if so, they give you the next monthly dose... I've told them about feeling my heart "working faster than the usual", but.... the truth is, it's not that fatal for the moment, and I guess, they think the same way..... and I just want to make myself a bit more upgraded scheme, based on concrete information, which I try to quote here :(
« Last Edit: August 07, 2013, 09:57:30 PM by hiv_positive_BG »

Offline bocker3

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Re: I start asking myself questions about the meds
« Reply #56 on: August 07, 2013, 10:06:21 PM »
I want to ask everyone advising me, how should I interpret studies like this one:

https://www.ncbi.nlm.nih.gov/m/pubmed/22566588/?i=6&from=/20595906/related

"Ritonavir boosting dose reduction from 100 to 50 mg does not change the atazanavir steady-state exposure in healthy volunteers."

...
CONCLUSIONS: In spite of higher exposure to ritonavir with 100 mg, atazanavir exposure was equivalent; the lipid profile was better under the lower booster dose (50 mg).

And I want to ask you something more: are you sure that all doctors in all countries know and/or follow the most recent data, which appears?! And don't you know, that, even if they know such stuff, there are NATIONAL PLANS AND GUIDELINES, which they have to follow..... First line meds should be such and such, second line - another, etc. And most of all - these drugs are free for patients. So docs should give you the cheaper combination with the least side effects, not the best one, which may cost twice the price :(

P.S. mecch, I know you're right, but getting on with one's life is harder than playing with meds :( That's the naked truth. You see, I find myself someone, who wants to escape the common practice and just make an informed step ahead. It's true I also have these heart disruptions... But, to tell you the truth, I don't even have a personal doctor... You just go in the hospital department, at a particular scheduled hour, there's one of the ~10 docs working for the department, they ask you whether you fell OK, and if so, they give you the next monthly dose... I've told them about feeling my heart "working faster than the usual", but.... the truth is, it's not that fatal for the moment, and I guess, they think the same way..... and I just want to make myself a bit more upgraded scheme, based on concrete information, which I try to quote here :(

All I can say is --- deaf ears.  Nothing is getting through.

This thread shows that you do NOT have your life under control -- and it's not because of the meds you have to take.  It is your obsession about the meds you are taking.  It's your desire to deal with this "differently" than everyone else.  It's your hope that you can find an easier, softer way to deal with your HIV infection.

Here is the bottomline -- you have HIV.  If you want to live you have to rely on those who are smarter -- push them and not, necessarily take everything at face value -- but you must realize your limitations.  Finally -- if you don't start LIVING WITH HIV and stop trying to IGNORE REALITY, you will have a sad, possibly shortened, life.

Good luck,
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 #57 on: August 07, 2013, 10:14:18 PM »
OK Mike, but are you sure, that the Italian and Spanish scientist I'm quoting are not smart enough? Isn't it better to rely on fresh data, collected in the last year, than on national plans, which get updated once every two years, at least in my own country? Aren't the sources I quote "smarter" than me?

If the data I quote becomes common practice in a year or two, what would you say? Who'd return me the wasted body organs, which may have been spared, if I've believed these scientists, but not some national plan?

Online mecch

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Re: I start asking myself questions about the meds
« Reply #58 on: August 07, 2013, 10:19:08 PM »
Im not your man to give you specifics on dosages but you can trust what Newt has to say thats for sure.
Yeah, we know that there are national guidelines and limitations.
My first HIV doc kept me on my first combo - Sustiva - Truvada - far too long after I started to report the central nervous system side effects some people can get. But it was the first line and recommended.
I learned about the side effects here, in fact. And my doc sort of plead ignorance but finally said it was a mistake.  Anyway, after his second mistake, I switched docs. And that first one, he was a big cheese infectious disease HIV specialist doc at a major swiss clinic.  So yeah, you are correct, they dont know everything.  BUT that is not the dangerous game you are playing.  That doc still knew a lot more than me. and he safely delivered me to a better combos that had no side effects.  And on other things too, he treated me well.  His wisdom.  I went to work and went about my job and did the things I KNOW WELL, which is certainly not HIV medicine and treatment.  Get my drift.
Why dont you try to see the generalist, like we were talking about, above? 

Any yeah, of course the medical establishment might push people unto cheaper meds. That sucks.  I couldn't get on Isentress right away because it was then, a few years ago, approved only in the US, first, and not yet my country, and second, it was only approved for second line treatment. 

When I went to get my Isentress, the pharmacist for the first time ever, remarked on how damned expensive it was.  Even here in rich Switzerland. 

It is what it is.  We deal with all this stuff as it comes along, year after year.  Meanwhile, we live healthy with HIV by doing what the experts advise...

You can pace yourself an learn a lot about hiv.  By contributing to this forum, and its knowledge that builds over months and years, its not instant...  But really your principal objective is to learn just enough, and get on with other things in your life.  Which, as you say, are difficult and challenging.

What about mental health treatment in your country?  Whats available?  Have you ever been evaluated for your mental health?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online mecch

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Re: I start asking myself questions about the meds
« Reply #59 on: August 07, 2013, 10:24:49 PM »
Take the study to a DOCTOR, your treating doctor, and ask if YOUR situation allows you to try a reduced booster dose.  YEp. Thats smart. Maybe the answer would be, sorry, sweetie, unfortunately we can't monitor the switch, so we advise you against it.  That would suck, but it would be wise. 
But the information was already given to you, way above.  The best hunch for you is that you need to get off the reyataz completely, and onto a different combo.  Get it?
Maybe that might be offered to you.  As I said, the squeaky wheel gets the grease, and you need to be firm but polite and charming making those squeaks.  Thats what works for me at least, getting stuff out of bureaucracies.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online mecch

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Re: I start asking myself questions about the meds
« Reply #60 on: August 07, 2013, 10:30:49 PM »
Its also not unusual for HIV+ people to believe or fear that HIV medicine is poison, like an an acid corroding the insides.
You sound like you might believe this.  With this talk about organs, etc.

You do realise that unchecked HIV destroys everything inside.  HIV medicine isn't poison. These are old fears....   Your gastro might be because of the protease and booster drugs, yep, but the solution is a drug switch.

You also might have taken a gastro hit before you started the meds. It can take time for things to really repair.  YOu haven't been on meds all that long...
“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 #61 on: August 07, 2013, 10:35:11 PM »
mecch, you're touching on very sensitive topics, I believe you're a pretty clever person. I admire you. We have a psychologist for free in the hospital, where you take the meds. My mental health has not been tested, I may have some problems, but I don't want to address them. I just want to use some common sense about my meds. I've almost reached to the conclusion, that, based on that Spanish study, I could cut half of the Norvir dose and then maybe everything would be nice and fine.

One more problem I have, which is due to the pills (but I don't know which one - Norvir or Reayataz or Kivexa) - I've started sweating too much. Initially it happened at night, when I started meds. That has stopped. But now, if I go for half an hour down the street, and I take my wallet or phone out of my pocket, they're all drenched. That has NEVER happened before. And now, as I think about it, it may be due to the booster. And if I cut the dose twice, things may get better. And I'd already done it, I only fear I don't know my last two viral load results yet... :( I have to wait for a month at least, hope that won't be fatal... Till then I think of taking my meds every 26 hours and that's it... at least I'm doing something.

P.S. mecch, thanks for your second and third post too. Well, I fear of talking to docs sooo much. I hate I have to ask something of them, and knowing, that they have someone dying in the next room and many other patients waiting... :( But thanks, anyway, I'm also thinking about addressing someone....

Thanks a lot for you attention, mecch :(

P.S. The tricky thing is, if I ask doctors and they agree to cut my Norvir to 50mg, again I won't be able to build up a reserve.  :D
« Last Edit: August 07, 2013, 10:38:22 PM by hiv_positive_BG »

Offline leatherman

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Re: I start asking myself questions about the meds
« Reply #62 on: August 07, 2013, 10:38:17 PM »
Have you ever gone to the hospital for your "heart issues"? saying your heart feels like its working faster sounds bad but obviously not bad enough for you to specifically seek treatment for that. It could be a-fibs. It could be anxiety. It could be genetics. (do you have a family history of heart issues?) It might have nothing at all to do with HIV or your meds.

Did you talk to you doctors about the diarrhea? Did you take any med for this occasional issue? did you document how often it happens? did you talk to your doctors about changing to another regimen?

there are so many other options to dealing with these issues that you could try - and none have anything to do with changing dosing amounts or schedule.

not just be "a chem bin", take same stuff over and over again, each and every 24 hours, like a robot... I really hate that situation. I want to make MY plan, I want to put some mind in all that happens.
well, there IS your problem. You don't LOVE the meds! You gave it away by thinking of yourself as a "chem bin".

you don't think that everyone with HIV wishes they didn't have to take meds... and take them daily? And you know it's not just HIV poz people. Think of the diabetics that have to inject insulin 3 times a day. Think about the people taking high blood pressure meds twice a day. How about the bipolar people taking psychotropics daily. There are a lot of meds out there that people wish they didn't have to take daily.

But man, with his incredible brain (whether you think it's thanks to evolution or God-given), has been able to study biology and chemistry to give us these miraculous drugs that destroy viruses and adjust levels of chemicals within our bodies which allow us to live long, happy, healthy lives - with an emphasis on the fact that they allow us to stay alive.

until you realize that your "Meds are Your Friends", you'll continue obsessing on some way you think you can adjust the dosage to something special. Don't get me wrong. You might have some side effects and changing meds might be the solution; but trying weird schedules and dosages is not the solution. Trust me after 21+ yrs of taking meds, in the long run, it's much easier to just take your meds and get on with life, rather than dreaming up crazy ways to change things.
leatherman (aka mIkIE)


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

Offline bocker3

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Re: I start asking myself questions about the meds
« Reply #63 on: August 07, 2013, 11:13:44 PM »
OK Mike, but are you sure, that the Italian and Spanish scientist I'm quoting are not smart enough? Isn't it better to rely on fresh data, collected in the last year, than on national plans, which get updated once every two years, at least in my own country? Aren't the sources I quote "smarter" than me?

If the data I quote becomes common practice in a year or two, what would you say? Who'd return me the wasted body organs, which may have been spared, if I've believed these scientists, but not some national plan?

Perhaps they will be right -- who knows.  But why are you assuming that everyone here -- who has lived with this disease for decades is wrong???  why are you only focused on what you want or wish things to be instead of what is reality?  Why do you think that YOU are different??  I am not trying to mean -- I am simply trying to help you change your outlook.  Look at some of your word choices -- "chem bin", "wasted body organs", etc....  you have let HIV take over your life.  Want control??  Stop focusing on it -- do what you must to control it -- ie. take meds, address side effects.  Then move on with your life.

You are not unique -- many folks go through this type of angst early on -- but you have to LISTEN to the sage advice of others.  REALLY LISTEN.  Until you do that -- until you stop letting your virus run your life, this anxiety is going to build and get worse.  Yes, I know, easy for me to say, much harder for you to do.  I get it --- I've been newly infected too.

Again -- I am not trying to be mean -- but it is frustrating to watch your cherry pick things that fit your view of life with HIV and ignore the rest -- experience counts.  Someday, I sincerely hope, you will have some too.

I am going to bed now -- then off to AMG.

edited to add:  The folks who have responded to you are NOT basing their advice on your countries' standards, policies or protocols.  Stop confusing the issues here -- we are basing it off of PROVEN SCIENCE and ACTUAL EXPERIENCE.  This gets back to the "REALLY LISTEN" part above.........  The fact that your country does things similar to others doesn't mean they are short sighted -- it just may mean they are focused on things that have been shown to work.  Recent data isn't always best -- the best data is that which is accumulated over time.

Mike
« Last Edit: August 07, 2013, 11:17:31 PM by bocker3 »
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 Grasshopper

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Re: I start asking myself questions about the meds
« Reply #64 on: August 08, 2013, 12:03:40 AM »
I guess I really should ask long-term meds users, or "survivors", what they actually do.



I tested hiv positive July 26th 1992 (my 30th birthday), and started AZT monotherapy a month later. So if you do the math; I've been taking meds a few weeks short of 21 years  ;)

Offline leatherman

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Re: I start asking myself questions about the meds
« Reply #65 on: August 08, 2013, 01:37:57 AM »
I guess I really should ask long-term meds users, or "survivors", what they actually do.
honestly, some of the people who have been answering you ARE LTSes. Where do you think we get all this information from? from decades of living with HIV and taking the meds.  ;)

I tested hiv positive July 26th 1992 (my 30th birthday), and started AZT monotherapy a month later.
i tested hiv+/aids on 12/26/92 when I was 30, and started AZT monotherapy a month later
small world, huh? LOL
leatherman (aka mIkIE)


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

Offline Grasshopper

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Re: I start asking myself questions about the meds
« Reply #66 on: August 08, 2013, 03:01:41 AM »


After all, let's return to the original post - all the dosages are soo rounded numbers, in a way. 100mg, 200mg, 300, bla-bla. Some people weight 60 kg, some 120, they all get the same, they all feel healthy. I guess I really should ask long-term meds users, or "survivors", what they actually do.


Allow me to rain on your parade :

During trials, they DO take weight and BMS into consideration !

"Purpose

The purpose of this clinical research study is to assess the bioequivalence of atazanavir administered as a single 300 mg capsule relative to two atazanavir 150 mg capsules in healthy subjects.

HIV Infections
 Drug: Atazanavir + Ritonavir
 Phase 1


Active Comparator: A  Drug: Atazanavir + Ritonavir
Capsules, Oral, ATV 300mg as 2-150mg + RTV 100mg, single dose, 7 days washout crossed over to Treatment B.

Other Name: Abilify
 
Active Comparator: B  Drug: Atazanavir + Ritonavir
Capsules, Oral, ATV 300mg as single cap + RTV 100mg, single dose, 7 days washout.

Other Name: Abilify
 

 
  Eligibility



Ages Eligible for Study:    18 Years to 50 Years
Genders Eligible for Study:    Both
Accepts Healthy Volunteers:    Yes

Criteria


Inclusion Criteria:
•Healthy male and female subjects between the ages of 18 to 50 years old with a body mass index (BMI) of 18 to 30 kg/m˛
•Prior to enrollment, subjects must have physical and laboratory test findings within normal limits, and women of childbearing potential (WOCBP) must have a negative pregnancy test.


« Last Edit: August 08, 2013, 03:03:58 AM by Grasshopper »

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #67 on: August 08, 2013, 04:58:30 AM »
Damn... I've tried to sleep, but think about the Spanish experiment over and over again... https://www.ncbi.nlm.nih.gov/m/pubmed/22566588/?i=6&from=/20595906/related

Now I read Norvir Side Effects - http://www.drugs.com/sfx/norvir-side-effects.html

Stop taking ritonavir and call your doctor at once if you have any of these serious side effects:
...
-> rapid heart rate, increased sweating, tremors in your hands, anxiety, feeling irritable, sleep problems (insomnia);

-> diarrhea, unexplained weight loss, menstrual changes, impotence, loss of interest in sex;

-> weakness or prickly feeling in your fingers or toes;

-> severe pain in your upper stomach spreading to your back, vomiting, fast heart rate;

-> severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

Well, I read these symptoms, and I've had them all at some scale. They've actually described everything that irritates me. I really hate taking things in my hands, but how could you have clear statistical data, yet let yourself remain irritated? Honestly, I think of having 50mg Norvir with my 300mg Reyataz once a day, and not cut the Kivexa....  So I just take half a Norvir pill, instead of whole and that's it. I'll wait for 2 weeks and see if things are getting better. If nothing changes, I guess I could return to 100mg dose, just in case?

As newt has written too, "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".

Yet, in the Spanish experiment, I have data exactly for my case - 300mg Reyataz, combined with 50mg Norvir... Results are 100% clear..........

Offline Grasshopper

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Re: I start asking myself questions about the meds
« Reply #68 on: August 08, 2013, 05:24:04 AM »
First you started about Reyataz, now it's the Norvir. Seems like you've overlooked Epzicom....are you going to mess with that too ?

Go ahead and read up on Epzicom on this site (Homepage -> Treatment -> Drugs)...make sure to click on the seperate components : Ziagen & Epivir...I bet that will scare the Hell out of you.

So......still set on not going to consult with your doctor and possibly a psychiatrist ?

 ::)

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #69 on: August 08, 2013, 05:53:54 AM »
I really wonder what to do... here's the complete text of the study:
http://jac.oxfordjournals.org/content/67/8/2013.long

That's really important for me: "Mild increases in lipid profile (LDL and total cholesterol) from baseline values were observed solely when atazanavir was boosted with 100 mg of ritonavir. This increase was >10 mg/dL in half of the participants, and might have a potential impact on the risk of cardiovascular disease, depending also on other individual factors such as age, sex, blood pressure".

.... I've always win, if I've taken my own decisions, not depending on anyone else. The problem with that study is, it involves healthy people. You are right, the symptoms I've highlighted may be listed in the specifications of the other meds too. ......... OK, I'll ask a specialist, before taking any action. I have something in mind. The problem is, that if a man wants to do anything, he may ask and ask, until they find the right specialist to confirm what they want :)

Tomorrow I'll have fresh results of my cholesterol... since I've started taking HIV drugs my cholesterol has been 5,19, then 5,81 after a month. So it's increasing... So tomorrow I'll go and see the results of the blood test I had on Monday... I'll try asking some doc about decreasing Norvir...

I fear one thing the most: that I may take action, and ruin my treatment. I don't care if I'd die that much, but I may infect someone with HIV, if I do sex, and my treatment is ruined. If I'm overdosed, at least I'm more or less harmless, and all the consequences are for me only... :(

Offline Grasshopper

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Re: I start asking myself questions about the meds
« Reply #70 on: August 08, 2013, 07:21:19 AM »
You've been advised by many, but ultimately it's your life....so by all means do what ever you see fit.

If you have some time to spare, read this :

http://forums.poz.com/index.php?topic=36980.0

and also search the forum for : etay1207, and enlighten yourself.

Dovizhdane

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #71 on: August 08, 2013, 07:37:24 AM »
Grasshopper, I don't know if you're Bulgarian too, I see your "see you soon", written in Bulgarian :)

Well, I'm definitely not one, who denies HIV drugs. I know how I felt, when I had less than 200 CD4 cells, I thought I'd die and had nothing against that. But, even with no will to live, due to HIV drugs I feel pretty well only 8 months after starting them. I don't want to stop them, because I find heart attack better than slow, painful death, where you experience all diseases on Earth one after the other. But also I hate being dumb lamb. I believe, that the more information you've got, the better and finely tuned meds you could have. You know, Bulgaria is an ex-socialist country. I don't know, if I bring the paper I'm quoting above, and I've already printed, to the hospital - would they be able to understand it? Do they know English or not?  How much the docs at the hospital are informed, or they just follow national guidelines? I can't know that, you see... and I fear the med scheme may be a bit retrograde.

Offline Grasshopper

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Re: I start asking myself questions about the meds
« Reply #72 on: August 08, 2013, 07:50:50 AM »
I believe, that the more information you've got, the better and finely tuned meds you could have. You know, Bulgaria is an ex-socialist country. I don't know, if I bring the paper I'm quoting above, and I've already printed, to the hospital - would they be able to understand it? Do they know English or not?  How much the docs at the hospital are informed, or they just follow national guidelines? I can't know that, you see... and I fear the med scheme may be a bit retrograde.

What you wrote is way beyond funny....hilarious . Thanks for the laugh

  :P

Offline hiv_positive_BG

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Re: I start asking myself questions about the meds
« Reply #73 on: August 08, 2013, 07:55:41 AM »
I don't know what's funny... suppositions about docs, or that the meds may be retrograde  ::)  :P  I don't want to present myself in the hospital as "a clever head", bringing some papers in English from God know where... Sometimes it's better to keep calm and in the mainline, so you could get normal/standard service... Once you try to "know too much", one may get angry at you, though you didn't mean to be offensive in any way.. :(

Offline james3000

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Re: I start asking myself questions about the meds
« Reply #74 on: August 08, 2013, 08:36:40 AM »
I had TDM done and 12 hours after taking my pills there was no trace of Prezista (darunavir) in my blood.
I would take the Meds as prescribed if something goes wrong you may find that you have to take double the pills and a far more difficult regimen.

Online mecch

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  • red pill? or blue pill?
Re: I start asking myself questions about the meds
« Reply #75 on: August 08, 2013, 10:23:18 AM »
We suggested far above your side effects might be related to your ritonavir which youre taking because your on atazanavir. Thats why the real goal here is for you to get a doc to change you as soon as its feasible.  We all listened and understood how your particular location and this moment in time presents challenges to getting a combo change, but thats still the thing to pursue.
You're absolutely right - you don't need to go into the hospital and rave down the halls waving research papers in English telling everyone that you have solved the puzzle that is your side effects.  But thats a strawman because you WERE NOT going to do that. 
Just the fact of trying to communicate with doctors stresses you out. But the only way you are going to get a SAFE way out of your current bad feelings is to get a doc on board, because its the doc who is going to PRESCRIBE the new combo that you probably need.  Reducing your drugs may or may not be on the table when you have this conversation with a doctor.  If the doctor is indeed a specialist, mentioning the study about reducing norvir, while you are SPEAKING in bulgarian, is not going to offend the doctor NOR will it present you as pain in the ass.  These are RUMINATIVE thoughts you are having...  If a doctor finds you a pain in the ass, by the way, so what.  You still have to go beyond that and find a solution for your treatment.  The possibility that the negotiation for a treatment adjustment being awkward or challenging does not NULLIFY the fact that you still have to pursue the conversation with the docs.....

I hope you realise that you have a LOT of ambivalence about being HIV+ and about living with HIV.  These come out in the offhand comments.  For example, you are NOT going to infect anyone, if you have protected sex. 

I fear one thing the most: that I may take action, and ruin my treatment. I don't care if I'd die that much, but I may infect someone with HIV, if I do sex, and my treatment is ruined. If I'm overdosed, at least I'm more or less harmless, and all the consequences are for me only...

You are confounding many concerns here. 
1st sentence, YES, you should be afraid of ruining your treatment by being a cowboy!
2nd sentence, you dont care if you die??  This is probably behind a lot of whats going on in your ruminations....
3rd but "i may infect someone....".  See --- already 3 things that dont hang together, aren't related.... 
You don't want to infect someone - then put a condom on. This works whether you are detectable or undetectable.

You are "harmless" right now, whether you are detectable or not. 

Also, I've heard this sort of thing before from HIV+ people.  "I am so afraid I am going to infect someone."  "I don't care about me, I'm just so grateful I didn't infect my ______________ "  Etc etc etc etc.
These are confounded considerations.

HIV+ people are not walking talking biohazards... 

Also, Yes, care about yourself.  Yes, care about others.  Its not either one or the other...

Whether you realise it or not, your life does have value to other people.  Your country made the effort to have that list of meds available, whether they come with possibly asshole behaving middlemen, or not.  Possibly..... (the possibly prickly docs, the population who might have bias or make you feel guilty for needing expensive care.  Fuck em.  you have a right to live and be healthy, and ANYONE with a higher intellectual and moral reasoning will agree.  Thats why the care is in place.  Thats why countries have laws that attempt to respect and value everyone equally, even if the culture may not be all on board....).

Please go talk to ANY doctor soon and discuss your side effects and your thoughts about your treatment.  Chances are you will be heard out and yeah it sucks if you don't get a good result the first doc, yeah you might have to pursue it further.  By the way, doctors have a LOT of experience communicating with all different kinds of patients. They are experienced delivering effective treatment no matter the quality of the exchange - friendly, awkward, etc.  Also a gruff doctor can still be a good doctor. An anxious patient can still get good care.   

How can you extract yourself out of this spiralling internal debate that your principal life challenge is fucking with your HAART without doctor support, when you havent yet tried to get doctors support?



 



« Last Edit: August 08, 2013, 10:37:56 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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