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Author Topic: Which meds really get in?  (Read 1491 times)

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Offline friskyguy

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  • Posts: 109
Which meds really get in?
« on: September 16, 2014, 07:16:37 AM »
We know upon HIV infection, our brain is seeded with HIV very quickly causing damage to begin in this vital organ by infecting cells. The brain becomes an important reservoir for HIV infected cells and causes associated inflammation if meds cannot penetrate the BBB and do what they are supposed to do.

For those of us who are interested in choosing meds that penetrate effectively into the CNS (spinal fluid and brain) to fight potential ongoing HIV replication in these compartments, check out this link.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984056/

Article discusses the rationale behind such a goal. It is the most recent I could find....dated April 2014 and may assist you and your GP decide choice of meds or at least give you more information to consider when choosing or switching meds.

I have copied the content from (table one) from the link content and placed it below for easy reference. Results show yet another reason to perhaps ditch Efavirenz (poor CNS - central nervous system ranking, ie doesn't do much good for the CNS) and choose Dolutegravir (Tivicay) which has a high ranking of penetration of the CNS at 0.5.... refer the last line of content below for the rating.

Table one from article link above:

Selected drugs currently used in combination antiretroviral therapy and their ability to reach the central nervous system, as reflected by the cerebrospinal fluid:blood plasma (CSF:BP) concentration ratio in humans (expressed as mean values or mean range values from cited references)

Drug classes   
Drugs   CSF:BP   References

Nucleoside reverse-transcriptase inhibitors:
Zidovudine   0.5              27
Didanosine   0.21              28
Stavudine   0.16–0.40      29,30
Lamivudine0.06–0.23      30,31
Abacavir   0.18–0.36      32
Emtricitabine 0.26      33

Nucleotide reverse-transcriptase inhibitors:
Tenofovir   0.05              33,34

Nonnucleoside reverse-transcriptase inhibitors:   
Nevirapine   0.63              30
Efavirenz   0.003–0.01   35
Etravirine   0.01              36

Protease inhibitors:   
Saquinavir   ≤0.002       37,38
Indinavir   0.11   30
Ritonavir   0.001–0.005  38
Nelfinavir   UD in CSF       39
Atazanavir   0.002–0.014  40
Fosamprenavir   0.012    41
Darunavir   0.01               42

Entry inhibitors:
Enfuvirtide   UD in CSF       43
Maraviroc   0.028       44

Integrase inhibitors:   
Raltegravir   0.01–0.61       45
Dolutegravir   0.5       46
Sero converted Sept '10 / Confirmed + Dec '10
Jan '11, VL 9,500 / CD4 482 (32%)
Feb '11, VL 5,800 / CD4 680 (37%)
start Atripla
Mch '11, VL UD / CD4 700 (42%)
Jun  '11, VL UD / CD4 750 (43%)
swap to Kivexa and Efav. due to osteopenia diag. (DEXA) / kidney issues ( decline in eGFR to 77 )
start supplements - Vit D3 / Omega 3 / multivitamin / mini aspirin
Dec '11,  VL UD <20 /  CD4 670 (49%)  / CD4:CD8 = 1.4
all labs now within normal ranges
Mch '12,  VL UD / CD4 600 (51%)
Sep '12,  VL UD / CD4 810 (51%)
Mch '13   VL UD / CD4 965 (56%)
Sep '13   VL UD / CD4 (not taken)
Dec '13   VL UD / CD4 901 (35%) / CD4:CD8 = 1.1  /  eGFR > 100

Offline eric48

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Re: Which meds really get in?
« Reply #1 on: September 16, 2014, 08:51:34 AM »
this one is older, but easier to read...
This the referenred to Letrendre CNS chart



Dolutegravir is not listed (at that time not availble)
According to your data, the rating should be 4

Which is good to know... I can replace my NVP by DTG and not have to worry about that..
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline Irish Eyes

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Re: Which meds really get in?
« Reply #2 on: September 16, 2014, 10:13:16 AM »




For those of us who are interested in choosing meds that penetrate effectively into the CNS (spinal fluid and brain) to fight potential ongoing HIV replication in these compartments, check out this link.




Intresting, but too much for me to absorb.

I doubt if everyone gets to 'choose' their medication.

I don't even know what class of medication I'm on.
I was hoping for Atripla in anticipation of some good dreams but because my VL was too high it was scratched from the list.

Whether Atripla and Stribild (which I take) are in the same class, I have absolutely no idea.

As for the 'stuff' that makes up Stribild, I have no clue what they are.

NRTI, NNRTI, PI, Inhibitors ? Totally Greek to me.
Absolutely no idea what those initials stand for, mean, or taste like.
(thankfully as I write this Erics post is visible on screen otherwise I may have spelt them wrong).

I've been through this with Abso, (who happens to be very interested in all things associated with HIV), and not to be rude, but I neither have the time, patience or inclination to absorb and overwhelm my little brain.

Even when I get lab results the only thing that intrests me is the CD4 and VL numbers.
The rest I forward to Abso so he can 'compare and contrast' our results and advise me accordingly. Eg. Your potassium is low, eat a banana.

Yes we all have our interests, but thankfully the medical field is something I have zero interest in.
When I was dx, I accepted it immediately and moved on. My doctors spent years in school studying this stuff. They are my experts (well, and Abso to a degree)
I don't need to learn what they have already been taught.

I've said it before, HIV is without a doubt the least of daily concerns.

My most complicated thing associated to HIV is remembering to take one single pill sometime in the evening.

I don't know why all the above came out, but I find newly diagnosed more often than not overwhelm themselves.
It's enough to be diagnosed, but to then educate yourself about everything HIV, I don't think it's necessary.

Thanks, and you def are a friskyguy. LOL



10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43

Offline Miss Philicia

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Re: Which meds really get in?
« Reply #3 on: September 16, 2014, 11:02:27 AM »

Whether Atripla and Stribild (which I take) are in the same class, I have absolutely no idea.

As for the 'stuff' that makes up Stribild, I have no clue what they are.

All of this information is on this website, even if it's designed by someone circa 1998. Under the POZ banner which you are OCD about look for the "Treatment" tab, hover over it with your cursor and then click on "Drugs" which will take you to this link. All current FDA approved, and some in clinical trials, are listed by class along with brand and generic names. Clicking on any particular drug such as Stribild will provide further detailed information -- what it actually is, patient assistance information, drug interactions, possible side effects. I'd recommend at least reading up on the drug you are taking.

I agree it's very overwhelming for a newly diagnosed person compared to a dried up old pozzie like myself who has had the benefit of accruing a knowledge base as each drug was approved over the paste 25 years. Some people like knowing about everything there is to know, but personally I'd rather either masturbate or watch a J-Lo movie.
"I’ve slept with enough men to know that I’m not gay"

Offline Irish Eyes

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Re: Which meds really get in?
« Reply #4 on: September 16, 2014, 11:27:52 AM »

All of this information is on this website,……. 
I'd recommend at least reading up on the drug you are taking.


I know, I know, I know.

I started to read the Stribild promotional flier from my doc.
Started to take notes. Continued to take notes. Info started to get deeper and deeper. More and more pages of notes and confusion as to where it all circles back.
Then Abso mentioned the issues with cobistat.
Cobistat ? I thought that was the binder that held the tablet together.

Obviously I know nothing about nothing.

Negligence or nonchalence ?
I'm not bothered.

CD4 800+ VL UD, that's more than enough to absorb and I'm content with that.
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Which meds really get in?
« Reply #5 on: September 16, 2014, 11:52:10 AM »

Negligence or nonchalence ?
I'm not bothered.

CD4 800+ VL UD, that's more than enough to absorb and I'm content with that.

Nah, it's neither negligence or nonchalance... ok, perhaps the last one. If your doctor is a good one, and you're doing fine on what you are on, as far as I'm concerned why bother playing Junior HIV Researcher? Most patients don't even bother logging into HIV web forums now do they?
"I’ve slept with enough men to know that I’m not gay"

Offline Irish Eyes

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Re: Which meds really get in?
« Reply #6 on: September 16, 2014, 11:59:11 AM »

why bother playing Junior HIV Researcher? Most patients don't even bother logging into HIV web forums now do they?


Right now 10 members and 158 guests lurking.

Just think how much the comedy would evolve if 1/2 them there guests would become members. LOL

Init requires some new material and would be in her element, like a pig in shite.
« Last Edit: September 16, 2014, 12:08:40 PM by Irish Eyes »
10/30/13          Exposure
Mid-Nov-Jan    Seroconversion (7-8 rough wks)
12.26.2013      WB dx. HIV+
02.01.2014      OraQuick (result Negative?)
01.31.2014      VL 250700
02.03.2014      CD4  491  26%
02.26.2014      CD4  503  26%
03.05.2014      HLA B6701  not present
03.18.2014      VL 530873 (typical fluctuation)
03.21.2014      Start Stribild
04.14.2014      VL 104 after 24 doses
05.12.2014      VL 129 after 52 doses
06.10.2014      CD4 940 32%
06.11.2014      VL 87
07.22.2014      VL 20
09.23.2014      VL 43

Offline xinyuan

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  • Posts: 186
Re: Which meds really get in?
« Reply #7 on: September 16, 2014, 08:12:46 PM »
We don't learn every part of a car and how it works to drive it, yes? Similarly, people aren't expected to know the full details about their drugs (and a large number of doctors, to be honest). Of course, some people are fanatical about their cars, and others are fanatical about their drugs.

That being said, these drugs do have harmful side effects. So long as you and your doctors are aware and monitoring for these effects, you should be fine.

As for Junior HIV researcher ... let's just say most doctor's have a hard time understanding the tests that they order. You actually think they'd get minor details about drug classes, much less cutting edge research?

Offline leatherman

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Re: Which meds really get in?
« Reply #8 on: September 16, 2014, 09:28:31 PM »
Quote
Most patients don't even bother logging into HIV web forums now do they?
Irish, if all 23489 members were all HIV+ and all in America, they would barely be 1.5% of all the pozzies in America. Clearly most positive people never even darken our doors.

That being said, these drugs do have harmful side effects.
No, no, no, no. Most meds report <10 to 7% of the patients have short term effects (usually mild) and <5 to 2 % report long term effects. That means 90+% of patients have no side effects at all. To describe HIV meds as toxic or having "harmful side effects" is simply incorrect and irresponsible

Besides what do you consider "harmful"? Almost all side effects can be mitigated these days by switching to some other combo of the 25+ meds on the market.
leatherman (aka mIkIE)


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

Offline initforlife

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Re: Which meds really get in?
« Reply #9 on: September 16, 2014, 09:40:30 PM »
Right now 10 members and 158 guests lurking.

Just think how much the comedy would evolve if 1/2 them there guests would become members. LOL

Init requires some new material and would be in her element, like a pig in shite.
Why I love playing with the redheaded Irish step troll. but it would be fun if more did play along with me. but oh well some just don't know how to take me. I say just take me out feed me and bring me home and have all night sex and I'm good to go!  That willy guy played along for awhile then stopped playing too. but also we seem to hijack a lot of threads don't wana hurt any feelings by doing that so I tend to back off some!
I should have known he was bi

Offline initforlife

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Re: Which meds really get in?
« Reply #10 on: September 16, 2014, 09:42:27 PM »
 :o  Lol Irish did you call me a pig in shit?  :-\ 
I should have known he was bi

Offline drewm

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Re: Which meds really get in?
« Reply #11 on: September 16, 2014, 10:02:19 PM »
I would rather masturbate with MsP
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline buginme2

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Re: Which meds really get in?
« Reply #12 on: September 16, 2014, 10:24:15 PM »
Does any of this even matter? Has there ever been a study that showed a med having a higher cns score being better than one with a lower score?

Offline absopozilutely

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Re: Which meds really get in?
« Reply #13 on: September 17, 2014, 12:52:38 AM »
I would rather masturbate with MsP
Oh boy the next AMG is gonna have a circle jerk. Lmao.
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.
9/19 CD4 799 46% VL UD yayyyy

Offline xinyuan

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  • Posts: 186
Re: Which meds really get in?
« Reply #14 on: September 17, 2014, 08:25:56 AM »
No, no, no, no. Most meds report <10 to 7% of the patients have short term effects (usually mild) and <5 to 2 % report long term effects. That means 90+% of patients have no side effects at all. To describe HIV meds as toxic or having "harmful side effects" is simply incorrect and irresponsible

Does chemo have harmful side effects? Does Tylenol? Yes.

Does everyone get those side effects? No.

Does that mean people shouldn't do their due diligence and not get monitored? No.

Does that mean people shouldn't be cautious and should disregard warnings? No.


Every drug that has gone to trial and been FDA-approved has ADVERSE effects, aka side effects. Those percentages are not trivial. I myself developed a major drug rash to Stribild. Very rarely, these effects can be deadly.

I think it irresponsible to dismiss these effects. I think it even more irresponsible not to have people aware THAT's why doctors check on them and check labs. Unfortunately, most doctors don't warn their patients. Heck, almost all don't encourage their patients to contact them about side effect concerns. This lack / indifference more often leads to patients stopping the drugs on their own. No one tells them what to expect.
« Last Edit: September 17, 2014, 08:40:38 AM by xinyuan »

Offline Miss Philicia

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Re: Which meds really get in?
« Reply #15 on: September 17, 2014, 08:46:30 AM »
Does any of this even matter? Has there ever been a study that showed a med having a higher cns score being better than one with a lower score?

Not that I am aware of.
"I’ve slept with enough men to know that I’m not gay"

Offline eric48

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  • @HIVPharmaCure & tinyurl.com/HIVPharmaCure
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline Miss Philicia

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Re: Which meds really get in?
« Reply #17 on: September 17, 2014, 09:33:37 AM »
there you go:
http://www.iasusa.org/sites/default/files/tam/19-4-137.pdf

I should have been more clear to those lacking in common sense, that presenting one study or even a handful would not indicate anything akin to a consensus view requiring changes in NIH recommended treatment protocols.
"I’ve slept with enough men to know that I’m not gay"

Offline friskyguy

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Re: Which meds really get in?
« Reply #18 on: September 17, 2014, 10:46:10 AM »
good research article and not a difficult read.....thanks for sharing.  Knowledge is power and for others I suppose..... there is always still masturbation...... ;-)) lol
Sero converted Sept '10 / Confirmed + Dec '10
Jan '11, VL 9,500 / CD4 482 (32%)
Feb '11, VL 5,800 / CD4 680 (37%)
start Atripla
Mch '11, VL UD / CD4 700 (42%)
Jun  '11, VL UD / CD4 750 (43%)
swap to Kivexa and Efav. due to osteopenia diag. (DEXA) / kidney issues ( decline in eGFR to 77 )
start supplements - Vit D3 / Omega 3 / multivitamin / mini aspirin
Dec '11,  VL UD <20 /  CD4 670 (49%)  / CD4:CD8 = 1.4
all labs now within normal ranges
Mch '12,  VL UD / CD4 600 (51%)
Sep '12,  VL UD / CD4 810 (51%)
Mch '13   VL UD / CD4 965 (56%)
Sep '13   VL UD / CD4 (not taken)
Dec '13   VL UD / CD4 901 (35%) / CD4:CD8 = 1.1  /  eGFR > 100

Offline buginme2

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Re: Which meds really get in?
« Reply #19 on: September 17, 2014, 10:56:11 AM »
there you go:
http://www.iasusa.org/sites/default/files/tam/19-4-137.pdf

That article doesn't state whether any of this matters.  Yes hiv causes neurological problems.  Yes, HIV meds have different cns saturations.  Show me where one medication has been shown to be better at treating hiv neurological problems.  Just because one medication may have more cns saturation than another doesn't mean the outcomes are any different.  This seems to be all academic.

Again, does any of this matter? 

Offline eric48

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Re: Which meds really get in?
« Reply #20 on: September 17, 2014, 11:02:20 AM »
... not a difficult read....

Indeed... Letendre is the guru at the HIV Neuro behavioural center at Univ. Cal. in San Diego

They keep updating with new reserach work and updates to their scoring tables

They have published numerous studies. But this paper is easy enough to read

Now, when you look at it precisely, most of all classical combos do satisfy Letendre recommendation for a score > 7

So, you don't really have to worry about that.

The score table is a work in progress and you might find more recent versions with the newest molecules.
I have not been looking into that, as I use older molecules
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 3 months (2013: FOTO= 5d. ON 2d. OFF)

Offline leatherman

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Re: Which meds really get in?
« Reply #21 on: September 17, 2014, 11:05:53 AM »
Unfortunately, most doctors don't warn their patients. Heck, almost all don't encourage their patients to contact them about side effect concerns. This lack / indifference more often leads to patients stopping the drugs on their own. No one tells them what to expect.
never has a doctor NOT told me about side effects. never has a doctor not told me to call or return if I had a side effect. You just have had crappy doctors.

besides due diligence says that the patient ingesting these medications is the one responsible for learning more about the chemicals they are putting in there bodies. That package insert isn't there with every prescription just to waste paper and to have more trees cut down. It's there to inform the patient with even more information than their doctor told them.

don't get me wrong, I would have understood if you had said that some patients have side effects, of which some may be harmful. But to describe meds in general terms overall as "harmful" is simply not true for 90% or more of patients and is a very irresponsible thing to say about meds. this unsubstantiated notion of meds being "harmful" or toxic or poison is the reason/stigma behind why many do not start meds in a timely manner.

just read the threads here for some anecdotal evidence. People are often more afraid of starting meds than actually getting AIDS and dying without meds. They postpone/delay starting their meds for weeks and months at a time. Their lives are filled with unbelievable worry and stress. When they finally start taking their meds, they start threads like they are going to be posting the end of their lives. and what do they end up posting? within two weeks they post about how easy their meds are and how silly they were to have waited.

Does Tylenol? Yes.
great example!
an example for what I was saying, that is! ;) Less than 1% of patients have "harmful" side effects (some actually die!), and yet probably 99% of us pop tylenol without giving it a second thought because for 99% of the population Tylenol works with no side effects. (for disclosure purposes, I should point out that I am highly allergic to aspirin and think acetaminophen is a wonder drug)
leatherman (aka mIkIE)


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

Offline Dan0

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Re: Which meds really get in?
« Reply #22 on: September 17, 2014, 11:12:27 AM »
Again, does any of this matter?

To me - not really.  ALL the people that I know who are medication (there are a few) and none of them are on these boards.  They take their pills, don't pay too much about what's IN them, trust their doctor and don't mire themselves down day-in and day-out with every small annoyance that may or may not be related to the medication. We all know that taking some formulation for years/decades is bound to have some adverse effect with something, but the alternatives are probably much worse!  I would venture that I would have a worse time and worse long-term side effects of drinking three cans of Diet Coke every day for five years as opposed to a pill a day to keep HIV at bay.  Yet (and we see it on the boards), someone can be going into a full-blown, melt-down hysteria over an itch but probably don't pay much attention to the extra pounds, the horrible diet, smoking lack of exercise and whatever else may be causing that symptom....because it's all the pill!

Being informed and educated is one thing. Some people get there by reading and others through longevity with the process.  Being a psuedo-physician/scientist or obsessing over every internet link is another.  I have a life to live and I'm sure as hell not going to spend it reading study after study every night when the Walking Dead is on!

You find the medication/combination with your physician that affords you the best opportunity to have a life outside the illness, recognize the warning signs if something is not 'quite right', and trudge forward.
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline drewm

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Re: Which meds really get in?
« Reply #23 on: September 17, 2014, 11:25:30 AM »
To me - not really.  ALL the people that I know who are medication (there are a few) and none of them are on these boards.  They take their pills, don't pay too much about what's IN them, trust their doctor and don't mire themselves down day-in and day-out with every small annoyance that may or may not be related to the medication. We all know that taking some formulation for years/decades is bound to have some adverse effect with something, but the alternatives are probably much worse!  I would venture that I would have a worse time and worse long-term side effects of drinking three cans of Diet Coke every day for five years as opposed to a pill a day to keep HIV at bay.  Yet (and we see it on the boards), someone can be going into a full-blown, melt-down hysteria over an itch but probably don't pay much attention to the extra pounds, the horrible diet, smoking lack of exercise and whatever else may be causing that symptom....because it's all the pill!

Being informed and educated is one thing. Some people get there by reading and others through longevity with the process.  Being a psuedo-physician/scientist or obsessing over every internet link is another.  I have a life to live and I'm sure as hell not going to spend it reading study after study every night when the Walking Dead is on!

You find the medication/combination with your physician that affords you the best opportunity to have a life outside the illness, recognize the warning signs if something is not 'quite right', and trudge forward.

Well said DanO. If I spend the day on WebMD or any of the other assorted "medical websites" I can find PLENTY to be worried about. The media is loaded with stories from cockroaches in food to pink slime to God knows what else. All of this leads me to this:



« Last Edit: September 17, 2014, 11:54:22 AM by drewm »
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Online Jeff G

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Re: Which meds really get in?
« Reply #24 on: September 17, 2014, 11:29:51 AM »
Maybe one day doctors or a mad scientist will come up with a way to see if our meds are hurting our liver or kidneys ... and maybe they can call them labs or something .

Offline friskyguy

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Re: Which meds really get in?
« Reply #25 on: September 17, 2014, 11:36:33 AM »
Try thinking it about research in this way. An analogy.....for some time both SanFran and NYC advocating earlier commencement of meds before the US medical authority or guideline started its advocating.

I recall some countries started the START trial to help answer this question (and it still is going on!!!!) with final results still some time away. Yet as this issue got more airtime and experts looked at the data, guess what happened, guidelines changed and most experts now recommend commencement of meds on diagnosis.....and even the WHO changed their threshold stance to CD4s at 500  (arguably due to cost concerns). So good luck to those pioneers in SanFran and NYC.....they had a head start on the rest of us....what long term ramifications will that be....who knows for now....at least the pendulum has had a decisive move.

Another one....UD no STDs and low risk for the negative partner for unproteced sex.....they are even are giving the green light for negs and poss' to have children without the need for sperm washing for the poss partner.....this started with the Swiss research a few years back.

So science is a work in progress, always dynamic and everchanging in the view and treatment of this disease....thank the lord!!!!!! And yes it is difficult to test for HIV in some body areas......hence the research.

For sure some patients they will wait until the official guidelines are changed for comfort, even some docs will do the same, VL is UD in the plasma, kidneys are fine and liver OK..... and we are saved!!!! Nothing wrong with that approach for sure......yet there are others who are interested in learning more and how to hopefully come out of this disease in better shape when the cure finally arrives....call it a gamble, call it rolling the dice, call it informed decision making....whatever!!!!.......but sticking your head in the stand and masturbating (love  that comment) is maybe the right way to go for some but for many others perhaps not their desired past-time. ;-)

So its knowledge, and a primary reason why this site is here and in particular this sub-category (questions about treatment & side effects)......but of course everyone will do what they think is appropriate for themselves and in consultation with their hopefully informed physician.....my part of the world less emphasis on the term "informed".

Keep the feedback coming.....good to get some debate finally going.....lol
Sero converted Sept '10 / Confirmed + Dec '10
Jan '11, VL 9,500 / CD4 482 (32%)
Feb '11, VL 5,800 / CD4 680 (37%)
start Atripla
Mch '11, VL UD / CD4 700 (42%)
Jun  '11, VL UD / CD4 750 (43%)
swap to Kivexa and Efav. due to osteopenia diag. (DEXA) / kidney issues ( decline in eGFR to 77 )
start supplements - Vit D3 / Omega 3 / multivitamin / mini aspirin
Dec '11,  VL UD <20 /  CD4 670 (49%)  / CD4:CD8 = 1.4
all labs now within normal ranges
Mch '12,  VL UD / CD4 600 (51%)
Sep '12,  VL UD / CD4 810 (51%)
Mch '13   VL UD / CD4 965 (56%)
Sep '13   VL UD / CD4 (not taken)
Dec '13   VL UD / CD4 901 (35%) / CD4:CD8 = 1.1  /  eGFR > 100

Offline leatherman

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Re: Which meds really get in?
« Reply #26 on: September 17, 2014, 12:39:24 PM »
I would venture that I would have a worse time and worse long-term side effects of drinking three cans of Diet Coke every day for five years as opposed to a pill a day to keep HIV at bay.
maybe from all that NutraSweet!  :o But regular Coke, now that's totally different. ;D I have drunk well over a 2-liter of Coke a day for 30 yrs now. I attribute my longevity and my victory over teh aidsies to Coke and caffiene.

(Of course nicotine was a huge help to battle the hiv too, even though I had to quit smoking 6 yrs ago because I couldn't afford it. I still sneak a smoke every so often though (you know, when I feel aidsy :D ) because it's sooo good)
leatherman (aka mIkIE)


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

Online mecch

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Re: Which meds really get in?
« Reply #27 on: September 17, 2014, 05:27:25 PM »
Fake sugar is poison.
Corn syrup probably isn't that great and I suspect Leatherman you are an exception to the rule, for this corn syrup intake.
I agree that smoking is sublime and it sucks i cannot smoke!
Leatherman I really think you had to quit at a certain age for more than just funds. Really...  One shouldn't smoke in their 40s...  and 50s, come on, that's just rock and roll decadence.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Miss Philicia

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Re: Which meds really get in?
« Reply #28 on: September 17, 2014, 05:48:09 PM »
Ms. Deneuve smoked until 70!
"I’ve slept with enough men to know that I’m not gay"

Offline Almost2late

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Re: Which meds really get in?
« Reply #29 on: September 17, 2014, 06:14:40 PM »
To me - not really.  ALL the people that I know who are medication (there are a few) and none of them are on these boards.  They take their pills, don't pay too much about what's IN them, trust their doctor and don't mire themselves down day-in and day-out with every small annoyance that may or may not be related to the medication. We all know that taking some formulation for years/decades is bound to have some adverse effect with something, but the alternatives are probably much worse!  I would venture that I would have a worse time and worse long-term side effects of drinking three cans of Diet Coke every day for five years as opposed to a pill a day to keep HIV at bay.  Yet (and we see it on the boards), someone can be going into a full-blown, melt-down hysteria over an itch but probably don't pay much attention to the extra pounds, the horrible diet, smoking lack of exercise and whatever else may be causing that symptom....because it's all the pill!

Being informed and educated is one thing. Some people get there by reading and others through longevity with the process.  Being a psuedo-physician/scientist or obsessing over every internet link is another.  I have a life to live and I'm sure as hell not going to spend it reading study after study every night when the Walking Dead is on!

You find the medication/combination with your physician that affords you the best opportunity to have a life outside the illness, recognize the warning signs if something is not 'quite right', and trudge forward.
I also agree with your statement.. The day of my dx also with PCP, I quit smoking, cold turkey.. To me it was a no brainer.. same goes for the meds, This is you without meds=DEAD..This is you with them :).. I'm so grateful for them and have never missed a dose.

Offline Dan0

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Re: Which meds really get in?
« Reply #30 on: September 17, 2014, 06:22:30 PM »
Ms. Deneuve smoked until 70!

Ms. Deneuve probably also had a team of Argentinian plastic surgeons on speed-dial and retainer! 
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline xinyuan

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Re: Which meds really get in?
« Reply #31 on: September 17, 2014, 07:31:50 PM »
never has a doctor NOT told me about side effects. never has a doctor not told me to call or return if I had a side effect. You just have had crappy doctors.

leatherman, you will find in my posts that I am a huge proponent for starting cART. Early if possible. However, I am also a proponent for informed treatment decisions. Side effects should be discussed. We clearly agree on that point.

First, I thank you not to make assumptions about my doctors. They are quite good and usually on top of guidelines and literature.

Second, let's face this fact. Doctors only have so much time with patients. They are often overbooked and can only bill for a certain number of minutes. Most toss a prescription at their patients and say, "See you next time!"

I am in the healthcare industry myself and watched generations of doctors come and go. Some doctors are good. Most are not. I try to retrain those that work with me, but I can help only so much. I also speak to patients daily about their medications across many fields. Most tell me that they quit their medications because 1) they started feeling worse and 2) their doctors explained nothing. And if you've watched these visits and read their medical charts, it's clear most doctors don't.

Lastly, there are long-term side effects that are only beginning to be seen with various cART, such as heart disease, osteoporosis, etc. But, they can be managed and sure beat the alternative of being DEAD from AIDS or close to it. And researchers are trying to find newer, better agents.

Until then, I believe that we should stay proactive as patients and be on top of these effects.

Online mecch

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Re: Which meds really get in?
« Reply #32 on: September 17, 2014, 07:39:37 PM »
Ms. Deneuve smoked until 70!
And she is French and a movie star. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Online mecch

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Re: Which meds really get in?
« Reply #33 on: September 17, 2014, 07:44:48 PM »
leatherman, you will find in my posts that I am a huge proponent for starting cART. Early if possible. However, I am also a proponent for informed treatment decisions. Side effects should be discussed. We clearly agree on that point.

First, I thank you not to make assumptions about my doctors. They are quite good and usually on top of guidelines and literature.

Second, let's face this fact. Doctors only have so much time with patients. They are often overbooked and can only bill for a certain number of minutes. Most toss a prescription at their patients and say, "See you next time!"

I am in the healthcare industry myself and watched generations of doctors come and go. Some doctors are good. Most are not. I try to retrain those that work with me, but I can help only so much. I also speak to patients daily about their medications across many fields. Most tell me that they quit their medications because 1) they started feeling worse and 2) their doctors explained nothing. And if you've watched these visits and read their medical charts, it's clear most doctors don't.

Lastly, there are long-term side effects that are only beginning to be seen with various cART, such as heart disease, osteoporosis, etc. But, they can be managed and sure beat the alternative of being DEAD from AIDS or close to it. And researchers are trying to find newer, better agents.

Until then, I believe that we should stay proactive as patients and be on top of these effects.

What country do you live in? I feel sorry for you if you live where "most doctors are not good".  How terrible.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline xinyuan

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Re: Which meds really get in?
« Reply #34 on: September 17, 2014, 08:04:39 PM »
What country do you live in? I feel sorry for you if you live where "most doctors are not good".  How terrible.

Where else do insurance companies drive doctors to see more patients and provide less? America.

Online mecch

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Re: Which meds really get in?
« Reply #35 on: September 17, 2014, 08:11:31 PM »
USA?
Well I don't want to say something construable as anti-american.
I left the US in he late 1990s but up to then I ran into plenty of good doctors and only a minority of bad doctors and/or bad treatment from them.

I suppose this is off topic, but I refuse to believe that "most doctors" in the USA are "not good".  Neither their professional expertise nor the treatment they provide under whatever business plan they operate in.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline xinyuan

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Re: Which meds really get in?
« Reply #36 on: September 17, 2014, 08:19:54 PM »
USA?
Well I don't want to say something construable as anti-american.
I left the US in he late 1990s but up to then I ran into plenty of good doctors and only a minority of bad doctors and/or bad treatment from them.

I suppose this is off topic, but I refuse to believe that "most doctors" in the USA are "not good".  Neither their professional expertise nor the treatment they provide under whatever business plan they operate in.

Private insurance?

Offline newtome

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Re: Which meds really get in?
« Reply #37 on: September 17, 2014, 08:24:25 PM »
Getting back to the original topic, I am interested in the effects that my meds (Tivicay and Truvada) have on a neurological level.  Almost immediately after I started I felt more alert and my mood has changed, calmer.  Given the timing of my diagnosis, the longest I could have been infected was about 18 months and probably much less than that, so I do wonder what else are these drugs doing to my chemistry?  Heavy duty molecules combining with proteins (?) administered on a nano level, what else are they combining with? 

I admire the practical approach that many take and got on meds immediately (to fight the good fight) but questions about what is going on in my body and brain linger.

Offline leatherman

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Re: Which meds really get in?
« Reply #38 on: September 17, 2014, 08:40:18 PM »
Leatherman I really think you had to quit at a certain age for more than just funds. Really...  One shouldn't smoke in their 40s...  and 50s, come on, that's just rock and roll decadence.
no. I stopped totally because of money. Ohio raised the taxes again, and since I had already gone down to rolling my own, there's was no other choice than to stop - which of course, is one of the purposes of that tax in the first, to encourage people to stop.

after every lung xray, and I've had numerous thanks to the PCP and pneumonia, the doctors always tell me how good my lungs look. They inevitably say that they can see that I smoked some, like for a few yrs. I'm always delighted to explain I smoked for 30 yrs and nearly 3 packs a day for the last 3 or 4 yrs. LOL If I ever won the lottery (i know, i know. I have to play the lottery to win the lottery), the first thing I would do is go out and by a carton of cigarettes (menthol lights).
leatherman (aka mIkIE)


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

Offline leatherman

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Re: Which meds really get in?
« Reply #39 on: September 17, 2014, 08:40:38 PM »
First, I thank you not to make assumptions about my doctors. They are quite good and usually on top of guidelines and literature.
Unfortunately, most doctors don't warn their patients. Heck, almost all don't encourage their patients to contact them about side effect concerns. This lack / indifference more often leads to patients stopping the drugs on their own. No one tells them what to expect.
I wasn't really making assumptions about your doctors. I was only responding to your assumption about doctors.

leatherman, you will find in my posts that I am a huge proponent for starting cART. Early if possible. However, I am also a proponent for informed treatment decisions. Side effects should be discussed. We clearly agree on that point.
. . .
Lastly, there are long-term side effects that are only beginning to be seen with various cART, such as heart disease, osteoporosis, etc. But, they can be managed and sure beat the alternative of being DEAD from AIDS or close to it. And researchers are trying to find newer, better agents.
once again though, I'll point out that not everyone has long-term effects, thus labeling all meds as "harmful" is counterproductive to getting client adherence.

Most tell me that they quit their medications because 1) they started feeling worse and 2) their doctors explained nothing.
here in SC, people don't start and/or quit meds because of poverty (losing housing or access to healthcare), because they have heard the conspiracy theories that they are poison (sadly there is a racial component to these theories), and because their church has said prayer will heal them and they don't need meds.

when the doctor and/or peer counselors explains the low odds of side effects and the high odds of improved health (you know, not Jebus but Science! he he he I always hear Thomas Dolby when I say/write it like that :) ), we have found much greater adherence. Of course, getting housing and access to healthcare/meds for our clients helps ensure adherence also.

I think we actually agree a lot, though it may not sound that way.  ;) However maybe it's my LTS status of seeing what the glass empty is like, but I just see the glass as mostly full when talking about the life-saving health-improving qualities of HIV meds. I think saying things like meds are harmful, not only ignores the odds of how much they are not harmful, but discourages people from believing the meds are beneficial at all

Private insurance?
I have almost always had excellent docs. Well, except the first one. Poor homophobic old man. He started as an exclusive ID doc treating esoteric diseases and getting people their visas. After just a couple of yrs with a bunch of dying gay men in his office, he ended up banned from the hospitals because of his alcoholism and multiple DUIs. Part of me hates him, and part of me thinks he's another casualty of this epidemic. However all of my excellent care in Ohio and South Carolina has been with Medicaid/Medicare as my payer source.
leatherman (aka mIkIE)


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

Offline xinyuan

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Re: Which meds really get in?
« Reply #40 on: September 17, 2014, 08:58:10 PM »
Other than the central nervous system (CNS, aka "brain") penetration data that Eric has provided and this for Tivicay (http://www.natap.org/2013/CROI/croi_31.htm, http://www.ncbi.nlm.nih.gov/pubmed/24944232), I can't find much else on additional mechanisms.

I did locate a drug approval application to Australia. The application claims negligible CNS activity in rats. It does have a weak effect on a potassium channel in the heart at very high concentrations, but had no actual effect on the electrical rhythm of the heart in monkeys.

Just to warn you, it's very dense reading.

http://tga.gov.au/pdf/auspar/auspar-dolutegravir-140519.pdf

We know from symptom data that some experience insomnia and headaches (also in the application).

Beyond that, I am unable to locate any other hard data on CNS interactions.
« Last Edit: September 17, 2014, 09:05:59 PM by xinyuan »

Offline xinyuan

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Re: Which meds really get in?
« Reply #41 on: September 17, 2014, 09:01:10 PM »
I wasn't really making assumptions about your doctors. I was only responding to your assumption about doctors.

The saying goes: If you like sausage, you may not want to see how it's made.

I train them and work with them. I know more and more in the newer generations are failing their boards. It's not an assumption on my part.

Offline drewm

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Re: Which meds really get in?
« Reply #42 on: September 17, 2014, 09:06:09 PM »
The saying goes: If you like sausage, you may not want to see how it's made.

I train them and work with them. I know more and more in the newer generations are failing their boards. It's not an assumption on my part.

I am certainly glad that this HAS NOT been my experience!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline friskyguy

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Re: Which meds really get in?
« Reply #43 on: September 18, 2014, 12:36:51 AM »
Thanks Xinyuan for those relevant articles on Tivicay to the topic being discussed here. This latest research, in part, has helped me decide to once and for all to exit the Efavirenz and enter Dolutegravir on my next annual checkup/review.....and yes I am fortunate to be in a position to choose the type of meds that I want to take.....and not have a combination forced down my throat.

It could be that some of us here find it difficult or perhaps are intimidated to read scientific reports, and I agree that "some of them" can can be daunting and/or overwhelming to read through.

One suggestion is to just read the first part of a research report, ie "the Objective of the study" and scan down to the "Conclusion" part for the research result and see if the researchers can make any associations.

If you feel comfortable just look at the language used in the Conclusion part and try to determine if they are making any strong or weak links. By doing so you can miss all the numbers, analysis and charts etc, and this will save considerable brain hurting.

I am naturally a sceptic at heart and need overwhelming evidence before I change anything that is working well. But having said that i am always open to new developments and definitely better molecules to treat this shitty disease.

Doctors are human after all and can be lazy and potentially not incentivised to keep up to speed with newer developments and treatments etc. I have and will always take my own health as my own concern and priority and would never solely leave this up to someone else to make a health decision for me.

A jointly informed decision with the backing of my doctor approach definitely works very well for me. There is a dearth of knowledgeable doctors in my part of the world hence the onus obviously shifts to me....a reality really and I don't mind.

For others having their doctor be their GOD works for them and are happy, and "for whatever reason" are more than willing to leave it to their doctor to decide without even knowing what they are taking. Everyone is different. As long as one is comfortable with their approach taken ....... in any event cause its your life after all.....not your doctors'.
Sero converted Sept '10 / Confirmed + Dec '10
Jan '11, VL 9,500 / CD4 482 (32%)
Feb '11, VL 5,800 / CD4 680 (37%)
start Atripla
Mch '11, VL UD / CD4 700 (42%)
Jun  '11, VL UD / CD4 750 (43%)
swap to Kivexa and Efav. due to osteopenia diag. (DEXA) / kidney issues ( decline in eGFR to 77 )
start supplements - Vit D3 / Omega 3 / multivitamin / mini aspirin
Dec '11,  VL UD <20 /  CD4 670 (49%)  / CD4:CD8 = 1.4
all labs now within normal ranges
Mch '12,  VL UD / CD4 600 (51%)
Sep '12,  VL UD / CD4 810 (51%)
Mch '13   VL UD / CD4 965 (56%)
Sep '13   VL UD / CD4 (not taken)
Dec '13   VL UD / CD4 901 (35%) / CD4:CD8 = 1.1  /  eGFR > 100

 


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