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Author Topic: Resistance is futile - but inevitable....  (Read 6030 times)

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Offline Life

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Resistance is futile - but inevitable....
« on: April 15, 2007, 06:58:48 PM »
Wondering if anyone else is wondering? 

Ok I've been labled a worrier of sorts, but setting goals, getting things done ahead of time seems to be important to me.   I am on my first line regimen and hope to go a while without having to switch em up..  Do you think about how long this "one" will last and whats next if you do??   What do your docs say vs reality...

Signed, 

Wondering Eric
« Last Edit: April 15, 2007, 09:05:10 PM by Life »

Offline Miss Philicia

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Re: Resistance is futile - but inevitable?
« Reply #1 on: April 15, 2007, 07:12:07 PM »
No, I don't think about it anymore.  I lost count of the times I've had to change regimens.  For me it seems never to last longer than 3 years at most... and I've had a couple not last more a couple months.

Of course, there are many on here who stay on regimens for eons so don't let me discourage you.  My advice though is don't freak out when you have to change... yeah, I know it's a no brainer but for most it's simply reality that you will change stuff with some frequency.
"Iíve slept with enough men to know that Iím not gay"

Offline Andy Velez

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Re: Resistance is futile - but inevitable?
« Reply #2 on: April 15, 2007, 07:15:42 PM »
Eric, I don't know quite what you mean by "taking care of things ahead of time."

It seems to me the best thing you can for yourself is to take the best care of your health physically and emotionally now, live in the present and let the future take care of itself. Otherwise you end up spoiling what you have now worrying about things which may actually never happen.

One can hardly be blamed for wondering but that's very different from fretting and investing energy in planning for things that may not happen or if they do, will occur in a quite different way than you are imagining.

Your life is good, you have a partner whom you love and who loves you, you have successful work and more. Stick with living all of that today is my (unsolicited) recommendation.

Cheers,
Andy Velez

Offline Life

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Re: Resistance is futile - but inevitable?
« Reply #3 on: April 15, 2007, 07:20:17 PM »
Philly / Andy - Naw I am not fretting or freaking out, but rather just preparing for something that could be a long ways down the road, or maybe not so far.   As for preparing?  I didnt mean anything other than I seem to be like fixing up the home alot and getting those kind of expendatures out of the way so I wont have to deal with them for 10 or 15 years or so..  Like preparing for an inevitable ride that I have not even begun to take.   But you know, most people do fix up their homes now and again.   Mine just seems to be for all the wrong reasons...  Lowes loves me...  ;)

Eric

Offline allopathicholistic

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Re: Resistance is futile - but inevitable?
« Reply #4 on: April 15, 2007, 07:26:54 PM »
most people do fix up their homes now and again.   Mine just seems to be for all the wrong reasons...  Lowes loves me...  ;)

Design queen LOL

My first regimen was awesome but it had to be dropped because the doctor said the Reyataz was probably raising my eosinophil level which was up to 15 (The norm is 6 or less) ... Now it's 7. But I can understand the curiosity because I too wonder how long this one will last and I also wonder how long the first one would have lasted had the little eosinophil situation not come into the picture.
« Last Edit: April 15, 2007, 07:39:48 PM by allopathicholistic »

Offline egello

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Re: Resistance is futile - but inevitable?
« Reply #5 on: April 15, 2007, 08:45:40 PM »
No, I don't think about it anymore.  I lost count of the times I've had to change regimens.  For me it seems never to last longer than 3 years at most... and I've had a couple not last more a couple months.

Of course, there are many on here who stay on regimens for eons so don't let me discourage you.  My advice though is don't freak out when you have to change... yeah, I know it's a no brainer but for most it's simply reality that you will change stuff with some frequency.

and the reason for the resistance was caused by not taking those meds on time? or did it happen completely on its own?
Reyataz / Norvir / Truvada/ Androgel 5 g / 2 days
1/29/07 14 T, 300 k V, 1.8 %
2/22/07 197 T, 247 V, 6.8 %
3/27/07 164 T, <50 V, 5.4 %
5/28/07 177 T, <50 V, 8.2 %
7/28/07 214 T, <50 V, 9.6 %
10/3/07 380 T, <50 V, 10 % no more Mepron, Famvir

Offline Miss Philicia

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Re: Resistance is futile - but inevitable?
« Reply #6 on: April 15, 2007, 08:48:42 PM »
and the reason for the resistance was caused by not taking those meds on time? or did it happen completely on its own?

I've never had adherence issues.  Some people just have an HIV that mutates quickly.
"Iíve slept with enough men to know that Iím not gay"

Offline egello

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Re: Resistance is futile - but inevitable?
« Reply #7 on: April 15, 2007, 08:52:54 PM »
omgosh,, so how do you find this out???????????? do they know if my hiv will mutate like this????? wtf... this really sucks...
Reyataz / Norvir / Truvada/ Androgel 5 g / 2 days
1/29/07 14 T, 300 k V, 1.8 %
2/22/07 197 T, 247 V, 6.8 %
3/27/07 164 T, <50 V, 5.4 %
5/28/07 177 T, <50 V, 8.2 %
7/28/07 214 T, <50 V, 9.6 %
10/3/07 380 T, <50 V, 10 % no more Mepron, Famvir

Offline Life

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Re: Resistance is futile - but inevitable?
« Reply #8 on: April 15, 2007, 08:54:01 PM »
Oh I am so by the book on my meds it's frightening....  No just natural resistance that comes with time is what I am refering to...

Eric

Offline LatinAlexander

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Re: Resistance is futile - but inevitable....
« Reply #9 on: April 15, 2007, 09:11:47 PM »
I do not know. I'll switch my meds again. DDI hurts my muscles.

Alex
Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline Blixer

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Re: Resistance is futile - but inevitable....
« Reply #10 on: April 15, 2007, 11:58:19 PM »
Eric, I can definately identify with what you are saying.  Every time I go in for blood work I find myself wondering if things are still okay. I wonder if the meds have started to fail.  I asked my doctor about this on Friday and she said that is common but that in most cases if you take your meds like you are supposed to and you get through the initial side effects then lots of people have years on the combo before needing a change.  Not everyone by any means, but by far the majority.  That was her take on things.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline sdcabincrew74

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Re: Resistance is futile - but inevitable....
« Reply #11 on: April 16, 2007, 12:23:01 AM »
Egello - my doc said that 80% of the time resistance is because of adhearence issues.  However, it is well known that up to 20% or possible more of all resistance occurs even with perfect adhearance.  There is nothing you can really do in those cases except switch meds and hope that medical science develops new drugs faster than your virus learns to beat them.
The difference between an overnight and a layover is luck!

Offline Miss Philicia

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Re: Resistance is futile - but inevitable....
« Reply #12 on: April 16, 2007, 12:37:38 AM »
It would still be interesting to see by polling people on HIV meds at least 10 years what the average length of time on any one regimen was before switching to another.  Though I seemed to receive some *gasps* with my 3 year experience I'm not really sure that's so outside the average.  Maybe it is, but I doubt not by more than a year.
"Iíve slept with enough men to know that Iím not gay"

Offline StrongGuy

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Re: Resistance is futile - but inevitable....
« Reply #13 on: April 16, 2007, 02:31:42 AM »
My Doc says he rarely sees people develop resistance to their regiment if they practice optimal adherence and don't have a history of prior resistance (not that it doesn't happen - he just says it's very uncommon).

He said in all likelihood my combo should last 10 years plus as long as I follow the rules. He has a pretty large practice here in NYC and I trust him with my life (literally) so I take his word for it.

If you scan the "Ask The Experts" forum on The Body the doctors over their pretty much offer the same view - give or take . Here's one listing I keep bookmarked from The Body that sums up what  my doc basically says...

Quote
Subject: Duration of Drug Combos
The Body's "Ask The Experts" Forum
Jun 7, 2006

Question:
For persons who are trying treatment now for the first time with at least a 250 t-cell count, how long does a drug regimen usually last before becoming drug resistant? two years? 5 years? 10 years? longer? Thanks for your answer.

Answer:
Benjamin Young, M.D., Ph.D, University of Colorado Medical Center

Thanks for your post.

Patients who remain optimally adherent to a well chosen (by baseline resistance testing) HAART regimen have a greater than 90-95% of having success. Adherence is much more important than baseline CD4 counts (at least in this range) in predicting the rate of treatment failure or drug resistance.

For patients who have viral suppression after the first year of treatment, it's very, very rare to see failure and resistance in subsequent years. BY

Here is the direct link: http://www.thebody.com/Forums/AIDS/Meds/Current/Q175235.html

Mike :)
« Last Edit: April 16, 2007, 02:38:00 AM by StrongGuy »
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline Miss Philicia

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Re: Resistance is futile - but inevitable....
« Reply #14 on: April 16, 2007, 02:58:24 AM »
It's nice to hear what Benjamin Young, M.D., Ph. says on The Body, but I'd be more interested in some sort of actual study than just a statement he made on the internet.

I know in my case viral suppression was NEVER achieved once I hit the PI years.  Ever, and I'm convinced that it was either because I was an early adopter of Invirase before it was reformulated, and they saw a lot of PI resistance develop in these people dooming forever with the rest of the class, or from my way above average diarrhea with all PI's, which never allowed for adequate absorption of the drug to the optimal levels.

For the 3-4 years before the advent of PI's of course I was just on the usual AZT, ddI and 3TC (I guess that was the standard... too long ago to properly remember details).  Obviously for those of us on these boards who were on treatment before HAART began our resistance profiles will be different, so that's another bone to chew on when reading my particular situation.

I have a great doctor too and I've found that once you're one of the more "treatment experienced" folks they all hedge their words more carefully than making the claims that you are hearing.  Of COURSE they're going to say that when you start out because the last thing they want you to do is miss doses.  If you're average person hears that perfect adherance still has a chance of mutations appearing they will not adere as well... that is a no brainer.

And certainly my doctor has no reason to question me, as he can plainly see I adhere (I'm on fuzeon now for a year, with 99% adherence and cd4's in the 900's. etc. -- it's quite clear I know to take meds). 

I'll temper this though that I really don't know the answer... I just know what my own situation is.  I'm well aware that large amounts of people are going to lie and tell their doctor that they're a good little HIV patient and take all their meds all the time.  For this reason I guess the verdict will always be out... how would the medical community even measure this in a study? 

EDIT:

There was a thread on this same topic back in June 06 others may wish to reference:

http://forums.poz.com/index.php?topic=488.msg4945#msg4945

If I'm reading this correctly, and it was linked in this other thread, "virologic failure was documented in 22% of patients with adherence of 95% or greater..."

http://www.annals.org/cgi/reprint/133/1/21.pdf
« Last Edit: April 16, 2007, 03:24:55 AM by philly267 »
"Iíve slept with enough men to know that Iím not gay"

Offline StrongGuy

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Re: Resistance is futile - but inevitable....
« Reply #15 on: April 16, 2007, 04:41:55 AM »
Be nice to Dr. Young! (LOL - I'm just joking!)

I do remember that infamous thread quite well.

I actually brought up that study to my doctor as I was curious at the time and, if my memory serves me right, he said that study was years old (seven or so), the drugs used were comparing various protease inhibitors (not controlled) sans boosting era, and the regiment dosings/combinations were not as refined then as HAART was only three years old when the study concluded. Comparing today to then - and not controlling regiments - was like "apples to oranges." Different regiments have better track records --  even if both achieve "undetectable" levels. At least this is what I remeber taking away from our conversation.

Basically it was coupled with his "relax" speech (which he's good at doing).

Whatever the case, my odds are still low - so I'm not going to worry about the "what ifs."

This is an area ripe for lots of debate - just my info from my end.

Mike :)
(who is up at 4:38 in the morning hoping this dang Noreaster will go away so his morning flight won't be cancelled - doubtful I know)
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline budndallastx

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Re: Resistance is futile - but inevitable....
« Reply #16 on: April 16, 2007, 06:50:09 AM »
I;ve had this discussion with my doctor and the response I got from him was laced with "Usually's", "If's" and "should's".  Medical science isn't perfect but it's come a long way in the past five years.  Add the new drug classes currently in the pipeline, we should be seeing many new options available to us.  God forbid, I the virus mutates and becomes resistant to the meds, there are other options so I can take comfort in that.   

As Andy stated, life is too short to worry about something that could possibly not happen for (hopefully) years.
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline Andy Velez

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Re: Resistance is futile - but inevitable....
« Reply #17 on: April 16, 2007, 09:46:56 AM »
Death is definitely inevitable. Postpone that mistake as long as possible was the advice my greatest friend repeatedly gave me.

Live today fully is how I see it. Let the future be whatever it is when you get there. 
Andy Velez

Offline Moffie65

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Re: Resistance is futile - but inevitable....
« Reply #18 on: April 16, 2007, 10:25:21 AM »
Eric,

I have an idea, why not forget these negative HIV details and concentrate on those that build your spirit and not tear it down with DRED..... Shit man, give yourself a break once in a while.  Damn you are such a control freak you now are trying to control what the virus is going to do in your body into the future.  Give it up, and concentrate on fun stuff.

I do have a suggestion as to how to do that and it centers on "KNOWING" the science.

1.  All of us have different viruses by now, as they have all now been programmed with our own dna.
2.  Your experience with HAART will not be like mine, because your immune system is different than mine or anyone elses.
3.  HIV mutation is inevitable as the virus is a mutant virus.
4.  No matter what anyone says, even though the virus is kept under control in the blood stream and stays non-detictble, we also know it hides in the brain, guts, lymph glands and bone marrow.  Nobody can change or argue that point, it just is.
5.  If your virus was caught from someone who was on HAART, there is every possiblity that it will be already resistant to some medications.
6.  There is no way to plan for an attack response with HIV, as it is far to individual a disease for anyone to second guess this bug.
7.  Many here, who might or might not have read your thread, have been on one cocktail for many years and are having huge success in keeping their virus under control in the blood stream very well.  Does this mean that their virus is not a mutant virus and will not mutate into something else in the future?  NO.  We cannot change what is. 
8.  I had drug failure last year, once again, so for those of you who say that adherance is the key, I call bullshit.  I hold a better than 99% adherance record for the last 13 years.

I hope this helps, Eric, because you really need to lay off the building of scenarios, and leave that to some of us older farts.

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline woodshere

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Re: Resistance is futile - but inevitable....
« Reply #19 on: April 16, 2007, 10:41:44 AM »
Definitely agree with Moffie's points.  I can only control how I live my life in relationship to HIV.  Adherence is one of the most important keys and the one thing I try hardest to achieve, keeping a 98+% rate.  What is going on between my body and HIV is beyond my control excluding adherence, plus getting adequate rest, reducing stress and such, so I am not so concerned about how long my regimen will last.

I too have found myself doing things that will help me in the long term that I didn't do prior to being positive.  I don't think it has anything to do with preparing for the inevitable, but instead of just getting things done that need to be done in the here and now.

Woods


edited numerous times because I can't do my job and post at the same time.
« Last Edit: April 16, 2007, 10:56:15 AM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Life

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Re: Resistance is futile - but inevitable....
« Reply #20 on: April 16, 2007, 11:18:01 AM »
I rely heavily on you Old Farts Tim.  I look at it this way...   

1.  I was diagnosed hiv postive - Stepping stone one.
2.  I accepted that I was hiv postive.  Stepping stone two.
3.  I was told that I needed to prepare for meds.   Stepping stone three.
4.  I began meds.  Stepping stone four.
5.  My meds are working and I am doing well.   Stepping stone five.
6.  Now I am lookiing at and or preparing mentally / physically for any potential change OR no change in my life.  But I am not going to be cought off guard again about my health, hiv related illness, safer sex, resistance,  or being prepared to exorb the costs of this disease.  Stepping stone six..

I really am not fearful about waking up in the morning.  I am enjoying my life.  I am enjoying my time with my Husband and our dog.   I am fixing up our home, getting ready for a jeep expidition and the snow is fucking almost gone!  Hiking, biking, climbing are all on my agenda... Not just Hiv... 

Eric
« Last Edit: April 16, 2007, 06:26:36 PM by Life »

Offline aztecan

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Re: Resistance is futile - but inevitable....
« Reply #21 on: April 16, 2007, 11:27:24 AM »
Hey Eric,

If anything, I am the king (queen?) of adherence. I am so anal about it I scare myself. (A good friend calls me disciplined!  ;) )

That said, there are no guarantees. What is working today my fail me next month. Or, I may go on forever until I am taken out by some crazed pro-life protester.

The bottom line is don't worry about what might happen.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline budndallastx

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Re: Resistance is futile - but inevitable....
« Reply #22 on: April 16, 2007, 02:16:56 PM »

Worry leads to stress which in turn has been shown to affect your immune system.  Even though it might be 'preparation' it is still worrying about something you can't control. 

Moffie is right, Don't worry, be happy!
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline Life

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Re: Resistance is futile - but inevitable....
« Reply #23 on: April 16, 2007, 02:42:14 PM »
 ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D
 ;D ;D ;D ;D ;D ;D ;D ;D I  AM  HAPPY!!!!!  ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D
 ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D

Hugs,


Eric

Offline Bucko

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Re: Resistance is futile - but inevitable....
« Reply #24 on: April 16, 2007, 02:57:05 PM »
Eric-

For what it's worth, Philly's experience as he's described it is identical to my own. I cannot ever remember a lab that got me undetectable below 50, and my adherence was always like Mark's (Aztecan's): anally discipilined.

I guess I'm one of the 20%, which isn't so bad. I'm used to being in much smaller population percentiles  ;D

Brent
(Who feels fine and looks fine so must be doing OK, right?)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline sadboy

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Re: Resistance is futile - but inevitable....
« Reply #25 on: April 16, 2007, 03:25:02 PM »
Eric

It is a problem many of us confront and fear but as long as you are adherent to your med there is nothing else you can do. For some people a regimen can last only months for others a decade. Just try not to think about it. There are also alot of people on this site who in the past may have abused substances which may have interfered with their adherence but are too proud to admit to it. There are tons of reasons why meds stop working and most of the time it has to do it with adherence and then there are few times where they simply stop working and the virus mutates at a rapid speed. Try not to let others experiences get you down because after all, we don't know what type of adherence they may have had regardless of how much they tell you they were adherent always.

sadboy

Offline StrongGuy

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Re: Resistance is futile - but inevitable....
« Reply #26 on: April 16, 2007, 05:48:54 PM »
Very good food for thought from some.

I'd just add that every living thing is "mutant" and has the ability to mutate. All  life is mutant - it's not a distinction bestowed only on certain living things. It's Evolution 101.

HIV has the capacity to mutate much much more rapidly than many other viruses/living organisms. But what mutations - how many will happen - and it's inevitibility leading to resistance in every case no matter what drug your on is not known. You need time to answer these questions.

Mike :)
« Last Edit: April 16, 2007, 05:51:09 PM by StrongGuy »
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline Life

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Re: Resistance is futile - but inevitable....
« Reply #27 on: April 16, 2007, 09:44:34 PM »

I'd just add that every living thing is "mutant" and has the ability to mutate. All  life is mutant - it's not a distinction bestowed only on certain living things. It's Evolution 101.

StrongGuy.... Well if I am truly a mutant.. I would like to mutate into that stud with the eye problems in Xmen.  ;D  Thanks for the post you found from Dr. Ben which really was freaky as he is my Id doc and has related similar stories to me with his face about 4 inches from mine...  I guess I didn't get his point then... But its becoming clearer..

Sadboy - I am doing the best to write my own story of hiv and not someone Else's..  Its like a new car for me even though its a FUCKING LEMON I am still even at 1.3 years learning how to operate the fucking thing.

Bucko, Mark, Philly, Tim...   You guys are and always have been a source of reassurance, acceptance and resolve.  Never loose that..  I gain strength in knowing (as others do here) that you have been down similar paths and always pull some of us out and up over and over again....  You guys are pretty dam special to me...

Hugs,


Mutant Eric

Offline Moffie65

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Re: Resistance is futile - but inevitable....
« Reply #28 on: April 17, 2007, 09:17:29 AM »
Try not to let others experiences get you down because after all, we don't know what type of adherence they may have had regardless of how much they tell you they were adherent always.

sadboy

..............but then again, some of us have faced our fears, our mortality, and our own lives and dealing with them honestly has been a DECISION we have made so as not to delude ourselves and those we have made a commitment to helping.  I know for a fact that those in this thread who have stated they are adherent, are in fact so.  If that doesn't fit into your sadboy photo of some of us, I am truly sorry.  Please don't diminish others here with pat statements that are patently untrue.  I will not stand for it, and I will risk getting banned to defend such truths. 

There!!!!!!!!!!!!!!!!!

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline AustinWesley

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Re: Resistance is futile - but inevitable....
« Reply #29 on: April 17, 2007, 09:25:07 AM »
Wondering if anyone else is wondering? 

Ok I've been labled a worrier of sorts, but setting goals, getting things done ahead of time seems to be important to me.   I am on my first line regimen and hope to go a while without having to switch em up..  Do you think about how long this "one" will last and whats next if you do??   What do your docs say vs reality...

Signed, 

Wondering Eric

I hadn't until you brought it up.  Thanks Eric!  ; )   Seriously, no I don't worry.   I'm 100% adherent and several of my friends have been on the same regimen for 10 years and counting.   The ones who seem to have issue are heavy drinkers/ users who get careless.

I don't see any problem with being proactive, and I'm a worrier as well.   I call myself a pessimistic optimist  ; )   

Just my 2 cents!

Wesley


PS.  Don't get sucked into the Borg!  ; )
« Last Edit: April 17, 2007, 09:33:03 AM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Dachshund

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Re: Resistance is futile - but inevitable....
« Reply #30 on: April 17, 2007, 09:37:34 AM »
I would appreciate the statistics proving that the majority of positive people who have experienced resistance to meds because of alcohol or drug abuse or were careless. I have never been addicted to alcohol or drugs and since beginning a drug regimen in 94 I have been almost 100% compliant...I am on my third different drug regimen. Way too much generalizing going on.

I will also generalize and state for the record I believe assumed identities are posting in this thread.
« Last Edit: April 17, 2007, 09:39:15 AM by Dachshund »

Offline AustinWesley

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Re: Resistance is futile - but inevitable....
« Reply #31 on: April 17, 2007, 09:55:30 AM »
Hey Dash,

I'm talking about people I know personally.   This is my opinion based on people I know and their issues and what they've shared personally with me. 

There are many reasons for resistance.  Had you had a genotype test run previously or were those available in 94? 

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Moffie65

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Re: Resistance is futile - but inevitable....
« Reply #32 on: April 17, 2007, 09:59:32 AM »
Austin,

I am not sure on this one, but I think Genotype came to the table around '97 or 8.  Like I said, someone may have a better reference than my memory.  (no doubt)

Love,
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Dachshund

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Re: Resistance is futile - but inevitable....
« Reply #33 on: April 17, 2007, 10:04:15 AM »
Hey Dash,

I'm talking about people I know personally.   This is my opinion based on people I know and their issues and what they've shared personally with me. 

There are many reasons for resistance.  Had you had a genotype test run previously or were those available in 94? 

Wesley


Yes I did have a genotype run and you are right there are many reasons for resistance and mine had nothing to do with drugs or alcohol. That was why I was cautioning the use of anecdotal evidence.

Offline jack

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Re: Resistance is futile - but inevitable....
« Reply #34 on: April 17, 2007, 11:03:47 AM »
I have taken just about every drug regimen since 89. I have always taken my drugs religiously. I have never been undetectable till this year.  When my Dr.(an assistant) saw my Vl, he said something like "its looks like you are taking your meds". I immediately answered him with " i have always taken my drugs".  I have dealt with the same bullshit for over ten years now,or however long they have been testing VL, being questioned if I am taking my meds. Look at my face,neck and body. What do you think? I actually left one DR. who constantly questioned my adherence.  I dont think I have ever had a drug regimen last more than a year. Since 2002 they rarely last longer than a few months. I am getting close to a year on  my most recent recipe and am expecting bad news soon.
Philly could be right about the diarrhea. Maybe 6 years on AZT? Maybe I was overdosed in those first Crix trials. I dont understand why the recipe I am on now doesnt make me sick, like every other one I have been on. I dont understand how truvada doesnt seem to bother me but viread and emtriva made my life unbearable.

Offline Miss Philicia

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Re: Resistance is futile - but inevitable....
« Reply #35 on: April 17, 2007, 12:18:07 PM »
I will also generalize and state for the record I believe assumed identities are posting in this thread.

I see what you mean on here AND OTHER threads this morning.  I'm going to start not replying to people on here that have less than 100 postings.  It's kind of sad that I'm forced to do this, but demz da facts.
"Iíve slept with enough men to know that Iím not gay"

Offline AustinWesley

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Re: Resistance is futile - but inevitable....
« Reply #36 on: April 17, 2007, 12:29:44 PM »
It would still be interesting to see by polling people on HIV meds at least 10 years what the average length of time on any one regimen was before switching to another.  Though I seemed to receive some *gasps* with my 3 year experience I'm not really sure that's so outside the average.  Maybe it is, but I doubt not by more than a year.

Hey Philly,

That is a good poll idea.  I guess the genotyping thing came later and from what you've said and some others I wonder now if some of those harsh early treatments could have been one component in causing quicker resistence?   

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Miss Philicia

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Re: Resistance is futile - but inevitable....
« Reply #37 on: April 17, 2007, 12:43:12 PM »
Hey Philly,

That is a good poll idea.  I guess the genotyping thing came later and from what you've said and some others I wonder now if some of those harsh early treatments could have been one component in causing quicker resistance?  

Wesley

I'm vague on the exact time that genotype test became available.  I know it was around the same time PI's came on the market, or that's how I recall it so I'd say '96'/'97.  I do recall clearly though that at the time they were exorbitantly expensive and the first year they were available my insurance in NYC would not pay for them.  Then when they were approved for payment they were limited to two or three per year maximum.

Also, as I stated previously I was an early adopter of Invirase, the first PI.  The initial formulation of Invirase, before it was quickly reformulated, caused a lot of issues and I speculate that this contributed to my early PI resistance issues.  As I stated, I never achieved a properly suppressed viral load when I started PI's... nor did I on subsequent PI's.  You can imagine the utter frustration, as PI's were supposedly "the answer" at the time and indeed probably were for 90% of people, but not me.

I also encountered worse diarrhea than most people from PI's, but because we were told to expect diarrhea from these medicines I did not complain loud enough and just tried to endure this.  I've tried over the past year to bring this up repeatedly, because if your diarrhea is constant and excessive logic dictates that you are not absorbing your medication properly, which will in turn speed up resistance problems.  The problem with this is that it has to be discussed with your physician in great detail, so that they can decide how bad the problem is.  I think, for me, by the time they tried correcting this it was much too late.

But hey, I was the guinea pig for all you newly infected folks so what could I do?
"Iíve slept with enough men to know that Iím not gay"

Offline budndallastx

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Re: Resistance is futile - but inevitable....
« Reply #38 on: April 17, 2007, 03:57:19 PM »
Quote
but hey, I was the guinea pig for all you newly infected folks so what could I do?

An I for one want to thank you and all the other long-term survivors on here for being the guinea pigs ...

If it hadn't been for the bravery and risks all of you took early on, I am sure the current state of treatments could not have been reached.  My own opinion is that I am the beneficiary of that and if my experience with meds is easier it's because of all of you.


Tom
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline Miss Philicia

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Re: Resistance is futile - but inevitable....
« Reply #39 on: April 17, 2007, 04:28:46 PM »
Ha... well, while thanks is nice and I appreciate it trust me when I say I didn't have much of a choice in all of it :)
"Iíve slept with enough men to know that Iím not gay"

Offline AustinWesley

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Re: Resistance is futile - but inevitable....
« Reply #40 on: April 17, 2007, 09:01:14 PM »
Hey Philly,

I'd like to 2nd Tom's motion there.   You've always been a very coherent and compassionate person to me as well even when others weren't.

Damn!   Well, I don't know what I can do for you now, but I'm learning.   The whole upset stomach thing is something I think most of us can relate to.   All I know on that side is that there are a lot of natural foods that have anti diuretic properties.   One is rice.   I'm no expert, but some thing seem to affect others more than some.   Stupid question, but have you ever tried a nutritionist?   

I guess Tom and others like me are the new guinea pigs, but I think we can all learn much from each other.   


Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Miss Philicia

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Re: Resistance is futile - but inevitable....
« Reply #41 on: April 17, 2007, 09:10:30 PM »
My stomach problems are mostly solved now that I'm on fuzeon.

Nutritionists?  Goodness yes, many.  Both here and back when I was in NYC.  When you have wasting issues like I did that's the first place they send you off to.  Nutrition is not my problem, I eat well.  My body has just always had a more intense reaction to PI's than most people.
"Iíve slept with enough men to know that Iím not gay"

Offline Life

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Re: Resistance is futile - but inevitable....
« Reply #42 on: April 18, 2007, 11:10:56 PM »
I wrote my doc and this is what he had to say about people who have receintly started on meds....

 Meds, How long till failure & switching
Apr 18, 2007

Dear Dr. Ben

Yes, it is one of your friends and patients writing you. Those of us who live in remote areas do not have as many of the answers say someone living in Denver have access to i.e. face to face with others like me (Eric). Ben things have been going very stellar-ly since going on meds 1.3 years ago. Little side effects and really no complaints. I feel 90% of my diagnosis is psychological. Now I know all my hiv on-line friends tell me to stay in the day and not think about tomorrow. However hiv really can push the limits of this mentality. What I ask is probably beyond you giving a definitive answer. The question is this Ok so I am doing well now and enjoying life. What happens when resistance begins on my first line regimen? Will the second line still allow me the ability to do the things I love and to continue to work? Corrective thinking in me is certainly something I am working towards. I know there are no guarantees. But there are new regimens and hopefully by the time I have exhausted the first three, science will have another three.. What do you tell your patients who are no longer treatment naive? I read a bit on CROI conference, but a lot of it is over my head. How about your translating to laymens lingo?

Thank you for everything you have done for me.

Kindest Regards,

Eric

The snow is melting, thank god!

 
 
 
  Response from Dr. Young

hi Eric-

It's great to hear from you, as always. It's been my experience that patients like you who achieve undetectable viral loads and remaind adherent to medications very rarely, if ever, have treatment failure and drug resistance. Indeed, with our current set of medications, especially after starting boosted PIs in the last 3 or so years, I haven't had a single patient with failure. So, to answer your first question, I don't anticipate failure happening.

Should it happen (as it does in about 5% of patients starting treatment in the first year), the pattern of resistance after boosted PI failure shows only resistance to 3TC in the vast majority of cases-- this means that there is preservation of all but 2 of the 27 different HIV medications. Second (and with today's drugs, third)- line treatments can and are successful for many patients, and are becoming quite well tolerated too.

It's important to distinguish between those patients who are treatment experienced without resistance from those who are experienced with drug resistance. For the former, we can switch from one drug regimen to another without great risk, so that we can adjust for side effects and the availability of new drugs; for the later, the pattern of drug resistance will necessarily dictate what new drugs can be used.

In general, new drug classes (like the soon-to-be approved integrase) retain full activity in patients who have from no- to very-extensive treatment histories. Indeed, using these classes of medications, my most difficult to suppress patients are finally achieving undetectable viral loads.

Hope this helps, thanks for posting. BY
 

Offline Miss Philicia

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Re: Resistance is futile - but inevitable....
« Reply #43 on: April 18, 2007, 11:30:13 PM »
Why does he say "rarely, if ever" and then use "5%"?

Keep in mind, like I said before, none of this negates any of the "old timers" experience.  When PI's first came out you only went on one of them, in combination with non-PI's that had already been on the market.  The formulations were not as good as things like Kaletra, hence a greater degree of resistance REGARDLESS of adherence issues.

The bottom line is that treating those of us that were on PI's in the 90's is completely different than it will be for those of you just going on currently available regimens.  Still, until they have a good lock on these new regimens (like in another 5 years) I'd take their grand wisdom with a grain of salt.  I've heard too many rosy scenarios and predictions over the years to buy all of them, but that's just me.  Not trying to rain on anyone's parade and be non-optimistic, because I'm actually optimistic about improvements in treatment.  It just allows me not to freak out should a downturn occur, and this has served me well in the past.
"Iíve slept with enough men to know that Iím not gay"

Offline Life

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Re: Resistance is futile - but inevitable....
« Reply #44 on: April 18, 2007, 11:38:55 PM »
Philly,  Ben's note to me really has not given me any more assurances than I have already tried to put together through your posts and so many others.   I think all I am doing is trying to not have the "punch to the stomach" as I did early on.  Being prepared mentally, physically and even spiritually that in time, things will change and when or if they do, I won't go so far off the deep end this time around.   It took me long enough to climb out of that first hole.  I just want to pad the next one I fall into, if I do..  Understand? 

Hugs,


Eric
« Last Edit: April 18, 2007, 11:45:26 PM by Life »

 


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