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Author Topic: For those fearing starting treatment . . .  (Read 3340 times)

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Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
For those fearing starting treatment . . .
« on: March 05, 2012, 10:27:24 AM »
I thought I would post an anniversary of sorts.

This month marks the 16th anniversary of my starting HAART!

Yep, it was just a scant 16 years ago that I swallowed my first handful of pills - and I do mean handful!

Saquinavir (the original formulation that ruined PIs for so many), AZT and Epivir - a total of 17 HIV pills a day.

The Saquinavir had to be taken with a full fat meal and 8 ounces of grapefruit juice. I have acid reflux. It wasn't pretty.

Of course, neither were the side effects. The insane bloating, followed by uncontrollable diarrhea. Ah, the underwear, jeans, bed linens and seat covers I ruined with that medication. :o

Luckily, I only took Saquinavir for two months before I switched to the much easier to take Crixivan, which came with its own rules (no eating two hours before or one hour after the dose was taken, which, by the way, had to be precisely every 8 hours less you run the risk of resistance.)

I took the Crixivan for 11 years and the AZT and Epivir for 13 years. I can still remember the timing - I knew exactly how long it would take for the nausea and metallic taste to hit after I took a dose.

I never had to switch because of resistance. I finally switched after long-term side effects set in. But, Oh, what a ride!

I just wanted to show those who haven't been on meds for too long that: A.) Yes, it can be done long term, and B.) You can still be living an active, happy life, even with a few side effects thrown into the mix.

HUGS,

Mark


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

Offline thunter34

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Re: For those fearing starting treatment . . .
« Reply #1 on: March 05, 2012, 10:40:50 AM »
A.) Yes, it can be done long term, and B.) You can still be living an active, happy life, even with a few side effects thrown into the mix.



And that certain devilish gleam in the eye can remain completely intact!
AIDS isn't for sissies.

Offline butpoz

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Re: For those fearing starting treatment . . .
« Reply #2 on: March 05, 2012, 11:40:51 AM »
Hi Mark,
I started haart about 3 months ago, not fear of it now nor before that but thank you for posting about yours 16 years :-)

Butpoz

Offline wolfter

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Re: For those fearing starting treatment . . .
« Reply #3 on: March 05, 2012, 12:43:09 PM »
Thanks for posting Mark.  It brought a smile reading what seemed like my own history.  ;)  It's amazing that we understood the timelines so perfectly of when those side affects would kick in.  Telling my honey that I couldn't go somewhere with him because I would have diarrhea in 45 minutes or that I was due to be nauseated and throw up within the next 20 minutes. 

Buying underwear in bulk and always having a few pair with you at all times and plastic baggies to throw away the soiled ones.  Oh the joys of early treatments!!!  Seat covers on everything.  Plastic zip covers on the mattress.  Sleeping with a few towells under you just in case.

But we made it here today. 

Take care and thanks again for posting.  Hopefully some of the newbies can read this history and feel fortunate that this won't be their experiences.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline denb45

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Re: For those fearing starting treatment . . .
« Reply #4 on: March 05, 2012, 12:54:36 PM »


Of course, neither were the side effects. The insane bloating, followed by uncontrollable diarrhea. Ah, the underwear, jeans, bed linens and seat covers I ruined with that medication. :o


HUGS,

Mark

Hell, I still have to do this , the bed liners, and men's depends underwear  :-[
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline buginme2

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Re: For those fearing starting treatment . . .
« Reply #5 on: March 05, 2012, 02:17:25 PM »
Mark thanks for the post.  Can you describe how the issues with meds you described are not what someone starting meds today would experience.  I wouldnt want someone to be scared by the post and defer treatment. 
Hell, I still have to do this , the bed liners, and men's depends underwear  :-[

This is not the experience of people starting meds today.  I just want that to be clear for those newly diagnosed.

Offline denb45

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Re: For those fearing starting treatment . . .
« Reply #6 on: March 05, 2012, 02:31:11 PM »
Mark thanks for the post.  Can you describe how the issues with meds you described are not what someone starting meds today would experience.  I wouldnt want someone to be scared by the post and defer treatment. 
This is not the experience of people starting meds today.  I just want that to be clear for those newly diagnosed.

Of course it's not  ;) and not everyone will end up on disability for the rest of their life, some of us were just unlucky  that way :)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline leatherman

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Re: For those fearing starting treatment . . .
« Reply #7 on: March 05, 2012, 04:03:53 PM »
Thanks for posting Mark.  It brought a smile reading what seemed like my own history.  ;)  It's amazing that we understood the timelines so perfectly of when those side affects would kick in.
even though I've only puked 3 mornings in the last 4 yrs, I still get up 2.5 hours early for any appointment - to give myself plenty of time to barf, and barf, and barf and barely recover before heading out of the house to work - because old habits over a long time period are hard to kill off ;D

There are days I *almost* miss trying to hold off barfing just long enough so that enough of the meds I took (like 8 tablespoons of liquid norvir or kaletra) would stay in my system. I actually developed resistance to a couple of meds because I literally couldn't keep enough in me - but when that's all there is to take, you do what you have to do. ;) LOL

I sure do love my current once-a-day 3-pill R/T/N regimen! :-*
leatherman (aka mIkIE)


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

Offline buginme2

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Re: For those fearing starting treatment . . .
« Reply #8 on: March 05, 2012, 04:45:10 PM »
even though I've only puked 3 mornings in the last 4 yrs, I still get up 2.5 hours early for any appointment - to give myself plenty of time to barf, and barf, and barf and barely recover before heading out of the house to work - because old habits over a long time period are hard to kill off ;D

Of course it's not  ;) and not everyone will end up on disability for the rest of their life, some of us were just unlucky  that way :)

You know, for a thread that was intended to alleviate some fears about starting meds you guys sure are doing a crappy job.

Offline Joe K

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Re: For those fearing starting treatment . . .
« Reply #9 on: March 05, 2012, 05:24:50 PM »
You know, for a thread that was intended to alleviate some fears about starting meds you guys sure are doing a crappy job.

Surely you jest.  Even in the age of of the 10-second attention span, I think that newly infected folks can understand the message given here.  But just in case, let me try.

This month I begin my 27th year of living with HIV.  I started therapy with AZT in 1987 and I have been taking HIV meds ever since.  At one time I took over 40 pills per day, just to treat my HIV.  Today, I take three.  The early medications were just that "early" and we learned as we went along.  It was a different time, where having access to the drugs often meant the difference between life and death.  We were still learning about HIV and its power to destroy our systems.  It was a time that was very difficult to live through, but many of us did and we did that by adhering to our drug regimes, without fail, because our loved ones were falling besides us in droves.

A newly infected person today, faces a very different life with HIV.  We understand so much more about the disease and treatment.  There are dozens of drugs that treat HIV, often with few, IF ANY side effects.  Someone starting drug therapy today, will enjoy the results of over three decades of science and knowledge regarding HIV and treatment.

There are however, some things that never change.  Living with HIV is just that, living with it, not in spite of it.  It requires that you pick a strategy and you stick with it.  It will test you to your core emotionally and sometimes physically, but it can never defeat you.  When you realize that life with HIV is a marathon, not a sprint, you see the wisdom of taking things very steady and slow.  You will find inner strength you never knew you had, usually when you need it most.  And through all of this, you will remain committed to living the best life you can, using all the tools you can find.

So there you are, is that any better?  The whole point of this type of thread, even with the descriptive parts, is to show folks, by our living example, that if we could do it, with the awful drugs we had to work with, our experience WILL NOT be your experience.  The key here is adherence to whatever treatment options you choose.

As always, slow and steady wins the race.

Joe

Offline denb45

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Re: For those fearing starting treatment . . .
« Reply #10 on: March 05, 2012, 06:00:07 PM »
You know, for a thread that was intended to alleviate some fears about starting meds you guys sure are doing a crappy job.

Crappy job, naw I don't think so, what us LTS had to go thur, the newly infected won't ever have to endure, we've paved the way, so to speak, and we've made it easier for many (those of us that made it thru the fire)

so forgive us LTS for being a little jaded, we really mean well  ;) you'd have to be a LTS to understand any of this  8) and most newly infected will always have fears, but knowldge is a very powerful tool, I glad that there are more of them around, we have few, and had to work with what we had, I'm with big sister Joe on this one  :D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline cd4lover

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Re: For those fearing starting treatment . . .
« Reply #11 on: March 05, 2012, 06:05:41 PM »
CUT for layout reasons :)

It's thanks to people like you if, today (at just 14 months from infection) i feel like as nothing ever happened, and life is and has always been the same (even if i have my "life sucks...what i did of wrong" moments sometimes).
And if i think that today meds are much more efficient, less complicated to take and manage, and "softer" than the ones you've taken...
...the only thing i can say is thank you LTSs, cause you're the proof that life, today goes on, and it would be a shame not to think about it, when before 1987 HIV was a sentence of death.

:)

(in 9 months of therapy [check signature] i have only experienced some yellow eyes the first days...that's all)
Last update: 20th February 2012

Offline jkinatl2

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Re: For those fearing starting treatment . . .
« Reply #12 on: March 05, 2012, 07:08:24 PM »
You know, for a thread that was intended to alleviate some fears about starting meds you guys sure are doing a crappy job.

My desire to alleviate fear is mitigated by my desire not to blow sunshine up someone's ass. For many people, the meds still have side effects which can be serious, ongoing, or both. For many others, this is not the case - but financing these meds might be an issue.

Would you have us lie and then act shocked when people come here with chronic diarrhea, intense emotional issues, or other well known side effects of existing medicine?

Seriously.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline LM

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Re: For those fearing starting treatment . . .
« Reply #13 on: March 05, 2012, 07:19:09 PM »
You know... reading these stories remind me of how much I dream of the day when a cure comes... not so much for me, but mainly to be able to see you guys say "I'm cured!!". I really want to witness that.

Offline jkinatl2

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Re: For those fearing starting treatment . . .
« Reply #14 on: March 05, 2012, 07:19:57 PM »
It's thanks to people like you if, today (at just 14 months from infection) i feel like as nothing ever happened, and life is and has always been the same (even if i have my "life sucks...what i did of wrong" moments sometimes).
And if i think that today meds are much more efficient, less complicated to take and manage, and "softer" than the ones you've taken...
...the only thing i can say is thank you LTSs, cause you're the proof that life, today goes on, and it would be a shame not to think about it, when before 1987 HIV was a sentence of death.

:)

(in 9 months of therapy [check signature] i have only experienced some yellow eyes the first days...that's all)

I think it's amazing, how far the meds have come. And we certainly need all the success stories like yours that we can get!

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline cd4lover

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Re: For those fearing starting treatment . . .
« Reply #15 on: March 05, 2012, 08:12:40 PM »
I think it's amazing, how far the meds have come. And we certainly need all the success stories like yours that we can get!
Well it's also true, that has not been easy.
Especially for people who live in particular conditions, or who don't have anyone to share this problem.
I've been lucky at the beginning, because the clinic where i'm followed is extremely efficient, and staff is awesome. I've been offered for immediate consulting and support service (even if...i've refused it...keep reading and you'll see why), but most importantly, i have found human support from my family (well the essential part of it) and have convinced my self, even by reading this forum, that nothing is as dark as it seems to be...and that the world or god isn't punishing me or whatever else, and that even if i did a mistake, i'm already paying for it, and crying on what i did, will only waste water, mineral salt, time and brain cells  ;D.

As i said, on my way, i've been helped, and this has been fundamental. So my advice (for what it counts...i'm just a 22 yrs old italian, positive from 15-16 months) is to find support and help...no matter where and from who. Everyone of us knows what the meaning of "help" and "support".

Could look stupid xD...but here it's 2 AM, so i'm sorry if i've been somehow emotional, or if i've made mistakes.
Last update: 20th February 2012

Offline leatherman

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Re: For those fearing starting treatment . . .
« Reply #16 on: March 05, 2012, 08:22:48 PM »
You know, for a thread that was intended to alleviate some fears about starting meds you guys sure are doing a crappy job.
Please re-read my posts, and others, as it seems you did a crappy job skimming through them.  ;) ;D Reminiscing about how terrible things were in the past, with some black humor, implies that it's not anywhere near that bad today.

Being bluntly honest, anyone afraid of starting treatment is a dolt. Without treatment, AIDS will kill you dead. With treatment, while you might feel crappy for a while as you adjust to the meds and lose the viral load, it makes you a fairly healthy person able to live a "normal" life with a normal lifespan. Which in itself is so different from pre-HAART days when people barely in their 30s were dropping like flies, you'd think we wouldn't even have to explain how the meds are so beneficial and worth taking.

To not expect better health and good results from the meds just shows how little a person has even bothered researching their upcoming treatment options. If they want to live in fear, darkness, and ignorance, there's probably little we can say to change that. People seem to want to believe the worse - until a few weeks later when they are amazed that the meds actually did what the science said they would do. If people would only read the drug info for the REAL facts about how only small percentages of patients ever have side effects these days. Sigh! Instead people act like the CDC and FDA would actually approve of meds that made things worse. ::) LOL

or simply

I USED to puke daily with AZT monotherapy in 1993 when I was 30; I always felt terrible; and I thought I'd be dead by 40 :'(
I DON'T puke anymore with R/T/N in 2012; Feeling better than I have in decades, I haven't been back in the hospital for 14 yrs; and now I'm about to hit 50!  ;D

Yeah post-2000 meds!!! :D
leatherman (aka mIkIE)


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

Offline buginme2

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Re: For those fearing starting treatment . . .
« Reply #17 on: March 05, 2012, 08:24:10 PM »
My desire to alleviate fear is mitigated by my desire not to blow sunshine up someone's ass. For many people, the meds still have side effects which can be serious, ongoing, or both. For many others, this is not the case - but financing these meds might be an issue.

Would you have us lie and then act shocked when people come here with chronic diarrhea, intense emotional issues, or other well known side effects of existing medicine?

Seriously.

The title of this thread is "For those fearing starting treatment"

Tell me, how is it that stories of needing to wear diapers at all will help those " fearing starting treatment?"

Offline Matty the Damned

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Re: For those fearing starting treatment . . .
« Reply #18 on: March 05, 2012, 08:27:31 PM »
The title of this thread is "For those fearing starting treatment"

Tell me, how is it that stories of needing to wear diapers at all will help those " fearing starting treatment?"

Because it's better than fucking dieing, Bugsy. Christ, you can be a  pansy sometimes. ::)

But even that is not what Comrade Mark means in his OP. He's saying to newer pozzies not to fear the fucking meds because today's are nowhere near as horrid as the kind he took back in the day.

And even then, he was able to get on with his life despite the difficulties he experienced with the meds of that period.

Honestly, even you should be able to comprehend that.

MtD

Offline jkinatl2

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Re: For those fearing starting treatment . . .
« Reply #19 on: March 05, 2012, 08:31:55 PM »
The title of this thread is "For those fearing starting treatment"

Tell me, how is it that stories of needing to wear diapers at all will help those " fearing starting treatment?"

Maybe because the stories of what happened to us Long Term folks serve as a reminder that today's outlook is so much better? Christ, you're happy to lap up the knowledge from us dinosaurs when you need it, so long as we stay in our caves and don't try to talk to the tourists.

Sorry, but you've A) totally missed Mark's point and the point of this thread, and B) have irritated the crap out of me.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline wolfter

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Re: For those fearing starting treatment . . .
« Reply #20 on: March 05, 2012, 08:37:29 PM »
The title of this thread is "For those fearing starting treatment"

Tell me, how is it that stories of needing to wear diapers at all will help those " fearing starting treatment?"

Many of LTS witnessed many who chose to die instead of dealing with the horrible aspects of the early days of treatments.  If, after reading all the additional comments that were added, I'm not certain what else can be explained to you.  It was stated by several people that these were the realities we experienced while waiting for the next break through.  Obviously, the side affects of starting today's treatments are much milder.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline denb45

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Re: For those fearing starting treatment . . .
« Reply #21 on: March 05, 2012, 08:38:30 PM »
The title of this thread is "For those fearing starting treatment"

Tell me, how is it that stories of needing to wear diapers at all will help those " fearing starting treatment?"

Hey what you got against old pozies and the ones that have to wear diapers, I wear them proudly, if you must know, I'm not gonna lie, or sugar-coat anything to makes it all touchy feellie,

 why on earth would I do that , I think it's important that people understand , and I'm NOT out to scare anyone into not taking AVRs,

 why would I do such a thing, I've been on them for 25 yrs. non-stop, it certainly doesn't mean, this will happen to anyone else, it's my reality every day , nothing more  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Cojo

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Re: For those fearing starting treatment . . .
« Reply #22 on: March 05, 2012, 08:46:40 PM »
I know that my quality of life today, and it is of quality, is ONLY because of the courage and bravery of the LTS'ers who live through the chaos, fear and panic that is unimaginable to me. You guys/gals are my heroes and I literally owe you my life. It is an honour to be on here with you and hear your advice, stories, great humour and your nudges of hope. Hopefully, the best I can do is pay it forward as well. Mark is a gem.
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

Offline forrest

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Re: For those fearing starting treatment . . .
« Reply #23 on: March 05, 2012, 09:36:35 PM »
From a newbie... this thread actually provided some much needed humor... and reality of what LTS have been through and how thankful I am that I won't have to go through what they have! While I can't speak for all newbies... I really don't believe there has been any harm here :)  The LTS have been to hell and back and that's just a reality.  At least newbies don't have to fear all of that crap!  (no pun intended   :-\ )

I think this is a good thread! Thanks to all who have participated  :)  Personally, I really was amused by these:

... you're happy to lap up the knowledge from us dinosaurs when you need it, so long as we stay in our caves and don't try to talk to the tourists.

LOL - this just hits me funny... don't talk to the tourists (aka newbies)

Because it's better than fucking dieing, Bugsy. Christ, you can be a  pansy sometimes. ::)

Don't sugar coat it ffs Matty.   ;D

2011-03-26:  Tested Positive

Date           |VL        |CD4 |4%  |CD8 |8%  |C4:C8
2011-04-06 |48,653 |603 |32.0 |646 |35.0 |0.61
2011-05-23 |64,324 |577 |36.0 |576 |36.0 |1.00
2011-08-02 |18,319 |574 |36.3 |587 |37.2 |0.98
2011-12-06 |10,375 |480 |30.1 |616 |38.7 |0.78
2012-02-22 |  9,674 |570 |33.6 |655 |38.7 |0.87
2012-05-04 |  8,439 |559 |30.4 |706 |38.4 |0.79

Offline jkinatl2

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Re: For those fearing starting treatment . . .
« Reply #24 on: March 05, 2012, 10:14:00 PM »
For Matty, that was sugar coating.

He's hardcore.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline denb45

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Re: For those fearing starting treatment . . .
« Reply #25 on: March 05, 2012, 10:17:29 PM »
For Matty, that was sugar coating.

He's hardcore.

I love Matty's  hardcoreness, @ least it's spot on and true to form, AIDS ain't for the squeamish  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline drewm

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Re: For those fearing starting treatment . . .
« Reply #26 on: March 05, 2012, 10:30:00 PM »
Great thread. I am approaching two years AIDS and on HAART. I like to read about the experiences of those who have been battling this much longer. Gives me some ideas about what I might expect at any given point.

Matty so glad to see you weigh in with your typical shotgun response. Haven't been around for awhile and it feels like old home again  :o
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 mikeyb39

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Re: For those fearing starting treatment . . .
« Reply #27 on: March 05, 2012, 10:46:26 PM »
And lets not forget that these 'new' meds also can come with their own little issues.  The lovely Truvada basically caused my body to start going numb and killing the nerves in my feet. This doesn't happen to majority of folks, but it can happen.

thankfully I had a doctor that was willing to experiment with removing it from my regimen and now my feet are starting to come back to life and my arms have stopped the constant buzzing and numbness. With the removal of the viread in the past couple of weeks, i can now sit at my desk and work without having to take my shoes off because of the pain and numbness in my feet.
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD

Offline Joe K

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  • 31 Years Poz
Re: For those fearing starting treatment . . .
« Reply #28 on: March 05, 2012, 11:53:57 PM »
The title of this thread is "For those fearing starting treatment"

Tell me, how is it that stories of needing to wear diapers at all will help those " fearing starting treatment?"

OK, now you are irritating me.  Saying it once was not enough, so how about this? 

When you get to the point where you have lived with HIV for a couple of decades, buried many of your friends, family and lovers, suffered from horrible diseases, crippling med side effects and the birth of stigma against poz folks, you can tell us how to share our stories with others.

Joe

Offline spacebarsux

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Re: For those fearing starting treatment . . .
« Reply #29 on: March 06, 2012, 12:49:58 AM »
Thanks for your post Mark.

As someone who is relatively recently diagnosed and still treatment naive, I consider myself very fortunate that this is 2012 and not 1985.

When I tested poz a little over a year ago and came to this site, I can't begin to describe how uplifiting and inspiring it was to see all the LTSers living and thriving 20 or 30 years with the virus. Mark, Killfoile, Miss P, Jg, Wolfter, denb, JRE,  (and each and everyone of the others all over the world, who frequent this forum or not)- all of you are heroes, truly.

So many people weren't as lucky. So many died before effective treatment options came out, and subsequently and in spite of them.

I think it would be an insult to the millions who lost their lives and weren't as fortunate to hear a prognosis of 'chronic manageable illness', if I were to continually moan and whine (once every now and then is perfectly ok  though :)) about the debilitating side-effects, or worse, if I were to give up.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline 47DegreesNorth

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Re: For those fearing starting treatment . . .
« Reply #30 on: March 06, 2012, 04:22:43 AM »
Reading posts like these make me feel really lucky to be living in these times... I couldn't imagine having to go through everything you all went through with the meds. :(

Thanks for the post!

Offline brenner

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Re: For those fearing starting treatment . . .
« Reply #31 on: March 06, 2012, 05:08:07 AM »
I think these posts are great...it puts so much into perspective.  These guys went through so much, not only through meds, but also predjudices and ignorance from society that we will never know.  They lost tons of loved ones, and lived in fear and panic of being next.  I can say that my easy to swallow, one pill a day, no side effects regiment puts it all into perspective.  I can talk openly on forums such as this and gain information that was privvy to only doctors and med professionals...i say, thanks for sharing your stories guys....in fact i would love to hear more of the 'good old days' from you, so whenever i feel sorry for myself, i can get a good slap of reality. 
B
Feb 23. 2011  poz diagnosed
Feb 28.  cd4 257, vl 262400, %21
Mar 14.  start Atripla
May 18.  cd4 639, vl 690, %33
Aug 19.  cd4 583, vl 60, %38
Nov 18.  cd4 450, vl UD, %38
2012
Feb.19   cd4 649, vl UD, %35
Jun 08.  cd4 524, vl UD, %34
Sep 16.  cd4 567, vl UD, %35
Dec 02.  cd4 592, vl UD, %35
2013
Mar 10.  cd4 688, vl UD, %35

Offline wolfter

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Re: For those fearing starting treatment . . .
« Reply #32 on: March 06, 2012, 08:25:55 AM »
OK, now you are irritating me.  Saying it once was not enough, so how about this? 

When you get to the point where you have lived with HIV for a couple of decades, buried many of your friends, family and lovers, suffered from horrible diseases, crippling med side effects and the birth of stigma against poz folks, you can tell us how to share our stories with others.

Joe

Spot on!  100's of years of experience between just a small group of us pretty much dictates that we can tell our stories however we choose. 

BTW, thanks again Mark for posting this in this forum for all to participate in.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline BT65

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Re: For those fearing starting treatment . . .
« Reply #33 on: March 06, 2012, 09:11:40 AM »
I appreciate Mark's post immensely.  I remember those old drugs.  I remember being in a wheelchair with adult depends on.  It was totally awful.  Try attracting someone in that state.  Of course, relationships were the last thing on my mind back then.  I just wanted to make it to 30.

Some of those older meds left side effects that cannot be reversed.  I still have painful neuropathy that travels up my legs, a huge gut (thanks Crixivan), and avascular necrosis in both knees, which makes it impossible to straighten my legs and feels like I'm constantly going to keel over from the pain of standing.

Today's meds are so much easier to take, and have better benefits.  I appreciate my fellow lts'ers and our shared experience.  Thanks again, Mark. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline denb45

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Re: For those fearing starting treatment . . .
« Reply #34 on: March 06, 2012, 09:33:33 AM »

Some of those older meds left side effects that cannot be reversed. 

AMEN Sister Betty, I still suffer from the ill effects of those old drugs, and NONE of my Doctors can fix it, so I still remain gravely disabled for the rest of my life, with continued underlining health problems, that cannot be
reversed or even fixed  :-[
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: For those fearing starting treatment . . .
« Reply #35 on: March 07, 2012, 02:03:16 AM »

Some of those older meds left side effects that cannot be reversed.  I still have painful neuropathy that travels up my legs, a huge gut (thanks Crixivan), and avascular necrosis in both knees, which makes it impossible to straighten my legs and feels like I'm constantly going to keel over from the pain of standing.

AMEN Sister Betty, I still suffer from the ill effects of those old drugs, and NONE of my Doctors can fix it, so I still remain gravely disabled for the rest of my life, with continued underlining health problems, that cannot be
reversed or even fixed  :-[

I have the long-term stuff too, the visceral fat, my "humpette," neuropathy, and permanently elevated CPKs, which I find especially troublesome at times but am not sure what caused them. Most of this came from Crixivan, but some may also have been assisted by AZT.

It really doesn't matter now, because I know that, had I not taken the plunge in 1996 and started meds, it is unlikely I would be here today.

Yes, I carry the battle scars from my early war against HIV, but, so far, I have beat the grim reaper. Death from AIDS-related illnesses is anything but pleasant or desirable, so the battle scars were a fair trade.

My point in starting this thread was to try to point out that, despite the accommodations we must make as our fortunes in life change, and the sometimes trying and difficult things we must endure, we can continue to live.

There are many of my comrades from the early days who lost their fight. I count myself as lucky to still be here.

Also, it never hurts to remind ourselves of how much better things are today, something for which I am very, very grateful.

Besides, I'm going to be eligible for a senior discount this year, at least in some places. ;)

HUGS,

Mark
« Last Edit: March 07, 2012, 02:06:04 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline worried100

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Re: For those fearing starting treatment . . .
« Reply #36 on: March 07, 2012, 03:16:27 PM »
Its just been a year since i started the meds and Mark you were one of the first to encourage me when i was worrying about going on them.

Well now i wished i went on them earlier just like you all advised.

I cant imagine what it was like for all you LTS. We have you to come to for advice. You all didnt have anyone to go to as you were the first.

Thanks for posting Mark. It helps us newbies remember how fortunate we are to have these drugs and what you all had to go through!

Blessings
xxx

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: For those fearing starting treatment . . .
« Reply #37 on: March 07, 2012, 03:50:04 PM »
Well Said Mark, there were a lot of folks that didn't like what many of us LTS'er had to say, but, I'm glad it was said, it needed to be said & understood...

so I 'm NOT gonna apologize for any of what I said, my suggestions to all you  newbe's don't get AIDS, it's no fun or picnic in the park, and you cannot afford it, trust me on THIS

if you do become HIV+  TAKE THE DAM MEDS PLEASE I implore you , so you can live a long & stable life  8)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline MarkB

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Re: For those fearing starting treatment . . .
« Reply #38 on: March 09, 2012, 05:14:42 PM »
My point in starting this thread was to try to point out that, despite the accommodations we must make as our fortunes in life change, and the sometimes trying and difficult things we must endure, we can continue to live.

There are many of my comrades from the early days who lost their fight. I count myself as lucky to still be here.

Also, it never hurts to remind ourselves of how much better things are today, something for which I am very, very grateful.

Mark, I found your thread - as well as the responses of some of those who remember the older forms of treatment and what they did to you - incredibly helpful. Those of us, like me, who started on a one-a-day medication with nothing like the side-effects you experienced, can only be grateful both for that and for the fact that there are people like you around to share your wisdom and experience. You remind us that we can continue not just to survive but to live: thank you.


Offline Buckeyerob75

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  • Posts: 25
Re: For those fearing starting treatment . . .
« Reply #39 on: March 14, 2012, 08:43:10 PM »
Coming from someone that hasn't started treatment yet I can only imagine what all of you LTS's went through. I only saw what was put on tv or ended up reading in some article about how truly devastating the side effects were. I also remember thinking how I'll never be in that position... wow how times have changed.

So...thank you for doing the toughest groundwork imaginable. I've decided to pursue treatment sooner than later after all I've read online here and in speaking with a couple poz friends (in addition to my ID of course).

Take care fellas  ;D
6/2011- Tested Negative
1/2012- Tested Positive- CD4 180/VL 105,000
4/2012- CD4- 129/VL 29,000
4/2102- Started Atripla
11/2012- CD4- 157/VL 40

 


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