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Author Topic: Long term survivor !  (Read 2343 times)

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Offline hottop101

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  • Posts: 14
Long term survivor !
« on: February 08, 2008, 09:59:25 AM »
I am a 23 year survivor, 12 years on anti-HIV meds, so I'm pretty up to date on issues.
My one recurring obstacle, which I am currently going through again right now, is changes
in my meds.  Every time I do, I go through an excruciating long period of adjustment, both
physically(side-effects) and emotionally.  I usually take matters into my own hands after reviewing
my options, and my ID docs recommendation.  My doc does not like me doing this, forever reminding
me of resistance development and such, but I know ME and if doing the complete regimen as ordered
means I am miserable most of the time, I am NOT going to do it.  I have been doing this on my own for
6 years now....result, some mild resistace to one class, VL's that have fluctuated from undetectable to
80,000 (no higher), and cd4's stable in the 200 to 350 range(40 in 1996, never higher than 350 since).
My quality of life has been what I call decent for me, when I do this.  When I try to stick to a full prescribed
regimen, my quality of life seems to TANK! 

I have a few friends who do the same, and my partner of 22 years, also POZ, knows I do this and for what reasons.
Am I alone in this, or do others have the same difficulties resulting in taking the same measures as I do??
Any feedback is appreciated.  BTW, it is not just "pill fatigue", but rather a quality of life issue!

Thanks for listening.
Richard
TAKES A LICKIN, BUT STILL KICKIN!  :-)

Offline BT65

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Re: Long term survivor !
« Reply #1 on: February 08, 2008, 10:41:01 AM »
Hi Richard,

For me, when I see my doc, we discuss all possibilities.  I think it should be a partnership.  People adhering to their regimens, while important, is really personal.  I do adhere to mine because I know the possibilities are worse.  I tested HIV+ in 1989, so I know the frustrations of taking pills.  In the end, we all make our own decisions, good or bad.  I would urge you to really have a heart-to-heart with your doctor.  He might be able to suggest something that would benefit you regarding a pill regimen, and the adhering to.  Oh, and welcome to the forums!
Peace~
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline hottop101

  • Member
  • Posts: 14
Re: Long term survivor !
« Reply #2 on: February 08, 2008, 10:52:58 AM »
Much thanks Betty,
I agree with all you say, and actually have had a heart-to-heart with my doc...I know what I sometimes do is not the best option, but for me the only option i can live with....so...I go from there.  I have always been one of those fortunate ones who seems to get the worst side-effects and in big doses!!  <G>  I have come to terms with that after 20+ years. 

Again thanks for the response and the welcome!
Richard
TAKES A LICKIN, BUT STILL KICKIN!  :-)

Offline aztecan

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  • Posts: 5,396
  • 29 years positive, 57 years a pain in the butt
Re: Long term survivor !
« Reply #3 on: February 08, 2008, 04:26:46 PM »
Hey Richard,

First, welcome to the forums. Glad you found us.

Now, I am unclear what it is you are doing with your meds. Are you taking some and not others, juggling the times, reducing the dosage by taking fewer pills?

I know people who have done all of the above. Only one is doing well. Others have suffered from viral breakthrough and resistance issues.

I have been positive a long time as well, tested positive in 1985. I started meds in 1996 and was on AZT, 3TC and Crixivan for 11 years, so I do understand pill fatigue and scheduling fatigue.

But I am curious as to what it is you are doing. If you could fill in the gaps for me, I would appreciate it.

HUGS,

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

Offline J.R.E.

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  • Posts: 7,148
  • Joined Dec-2003 Living positive, since 1985.
Re: Long term survivor !
« Reply #4 on: February 08, 2008, 05:18:13 PM »
Hello Richard,

Just want to say hello and welcome you to the site. I am also another long term survivor. I was diagnosed positive in October of 1985. I started meds October of 2003, with a viral load over 500,000 and a t-cell count of 16. Percentage at that time was around 3%. I am doing Ok I guess, considering where I started from.

I have been on meds now for about 4 years and four months. I do understand the pill fatigue, But I have to tell you...right now adherence is my biggest issue. Once in a while I will miss a dose, but otherwise it is imperative that I try to get those pills down on time, and everyday. I have a good relationship with my doctor, and make sure to tell him, everything that's going on. As Betty stated, it is a partnership, that one has to have with his/her doctor. Maintaining a good quality of life, can be very difficult at times, I just try the best I can.

 I guess like everyone else, I can have good days, but I also have some pretty crappy days !! You know,.... those days when getting out of bed, is almost impossible, and you really have to force and motivate yourself !


I find that I have to remain as focused as I possibly can. For an example, when I take my meds ( am or pm dose) out of the pill box, I better take them at that time. If I set them down for one split second, that is enough time for me to be distracted, and possibly forget about taking them. That happened to me just the other night, when I set my 8:00PM dose( viramune and viread) on the kitchen table, and forgot to take them.  I realised it much  later on at work, at about 5:00 in the morning !! My partner  also reminds me on occasion, as to whether or not I have taken my meds.

Besides cholesterol and triglycerides, my biggest concern is not to develop ( at this point) any resistance issues. But yes, it is a challenge, I can't even imagine the challenge, of those that have been taking pills 10,15 20 plus years. I am just thankful I have the pills to take in the first place, and the insurance that covers it. When I am unable to work anymore another chapter will open up, along with new concerns.

I have been on virtually the same regimen, since I started on meds. I am on Viramune ,Viread, and Epzicom. So, I haven't at this point been through any major changes , as far as the meds are concerned. I am sure the day will come somewhere down the road..



I see in your other post, that you have a home in St. Petersburg. Ed and I live up towards Palm Harbor. We are both permanent residents here.. Ed's Been here since 1977, I move here in 1980, where I met him, in July of 1980 Been together ever since. Ed is negative. The relationship had some very tough times, but everything is going well !! We're both 56 years of age.

It's good to hear from you !...

Take care of yourself------Ray

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline hottop101

  • Member
  • Posts: 14
Re: Long term survivor !
« Reply #5 on: February 09, 2008, 09:51:45 PM »
Thanks to all for your replies. 

Mark, let me try to fill in the gaps for you.

I tested positive in 1985, have been "aids defined" since 1996, and have been on several drug combinations since starting meds in 1996.  My CD4's since 1996 have never been higher then 300, and my VL's have been undetectable to as high as 98,000.  I have a very good working relationship with my ID doc, and a very supportive life partner (22 years and counting).

My problem has always been with side effects.  I am one of those fortunate souls who gets just about all the listed ones, with GI being the worse.  When Norvir first came out, I tried getting use to living in the bathroom for 6 months. We tried everything to help with the GI problems, even pot, to no avail.  So we stopped the Norvir.

Since then, what I have usually done, sometimes with doc approval sometimes without, is to try to alleviate this side effect by adjusting the combination, sometimes eliminating just 1 of the meds.  I have also gone on "holidays",  again some with doc approval some without.  No drastic outcome from the holidays (cd4 and vl wise), but I felt almost "normal" while on them.

That brings us to what is going on now.  My last blood work, 3 weeks ago, was CD4 120 (11%), VL 58,000.  My doc and I came up with a combination we though I could live with.  Kaletra, Trizivir and Isentriss (just FDA approved last Nov).  I started on this combination and right away I had the debilitating GI problems.  We had forgotten that Kaletra has Norvir in it, tho in a smaller dose.  So...I stopped the Kaletra, and almost immediately the GI symptoms improved.  My plan right now is to stay on just the Trizivir and Isentriss till my next blood work in 4 weeks.  Depending on those results, if my CD4 increases and VL decreases, I will most likely stay on just the Trizivir and Isentriss.  My query right now is whether to tell my doc I'm doing this when I see him after the blood work.  Most likely I will.

Mark, I know this may not be the best of approaches, but after 23 years of living with HIV, if by doing this improves my "quality" of life...Most likely I will continue doing it.  I understand your resistance concern, but I already have slight resistance to several avail drugs.  So until the day arrives where I have no option but to put up with being confined to home, I will most likely continue.  I am not bitter or angry, what i have been doing just seems to work for me.

I hope this fills in those gaps, and I welcome any response you may have.

BIG HUG,
Richard

 
TAKES A LICKIN, BUT STILL KICKIN!  :-)

Offline BT65

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  • Member
  • Posts: 9,938
Re: Long term survivor !
« Reply #6 on: February 09, 2008, 11:10:54 PM »
Richard, I believe quality of life is the upmost importance.  Adhering or not adhering to meds is a very personal decision.  I would tell your doc, however, because if you have to ever be hospitalized (God forbid) and he has on record you taking Kaletra, then they will give it to you in the hospital, and it sounds like that's something you want to avoid.  Good luck to you, sweetie.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline hottop101

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  • Posts: 14
Re: Long term survivor !
« Reply #7 on: February 10, 2008, 02:38:20 AM »
Betty, thanks for the support!  Much appreciated!  I will tell my doc about the kaletra, i agree he should know.
BTW....I am SO GLAD I found you guys! 
Richard
TAKES A LICKIN, BUT STILL KICKIN!  :-)

Offline aztecan

  • Member
  • Posts: 5,396
  • 29 years positive, 57 years a pain in the butt
Re: Long term survivor !
« Reply #8 on: February 10, 2008, 09:17:55 PM »
Hey Richard,

Yep, that clears things up nicely, thanks. I agree with Betty - and you. Quality of life is important.

Living with your butt stuck to a toilet (pardon the image) is no way to live.

I also agree you should tell your doc what you're doing, just to keep him up on what is what.

Since you are taking Trizivir and Isentress, that is giving you two classes of meds and a four-med cocktail. I'm no doctor, but that sounds like something worth trying to me.

I just went through the pain of switching meds last year. I, luckily, don't get many side effects, with the exception of Sustiva.

I did end up with a hump from the 11 years on Crixivan, which why I switched to begin with. Now, I take Combivir and Lexiva with a Norvir boost.

Good luck with this new trial for you. Let us know how the numbers go.

HUGS,

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

Offline hottop101

  • Member
  • Posts: 14
Re: Long term survivor !
« Reply #9 on: February 11, 2008, 04:48:10 PM »
Thanks guys and I will keep you posted.
Mark, the butt stuck reference is soooo true!   ;D
Told my doc and nurse prac. what I was doing and they seem ok with it, for now.

Is it just me or do some HIV/ID docs seem to get too hung up on the numbers???
My partner's doc, not same as mine, does the same thing occasionally.  He is and has
been for 4 years undetectable with CD4's always over 600...yet when is VL has become detectable
at all, his doc and CNP want to do something(like change meds) to get the VL undetectable
as soon as possible.

After 23 years I have personally not worried too much about my numbers.  I follow my
trends instead.  Gives me a better outlook on where and what I need to do.  Sound
feasible???

Again, thanks to all and HAPPY VALENTINES DAY!

Richard
xxoo
TAKES A LICKIN, BUT STILL KICKIN!  :-)

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Long term survivor !
« Reply #10 on: February 12, 2008, 01:01:54 AM »
Is it just me or do some HIV/ID docs seem to get too hung up on the numbers???
My partner's doc, not same as mine, does the same thing occasionally.  He is and has
been for 4 years undetectable with CD4's always over 600...yet when is VL has become detectable
at all, his doc and CNP want to do something(like change meds) to get the VL undetectable
as soon as possible.

back in dec, my doc had me all worried. there was a blip in my viral load. so I checked the handy-dandy aidmeds cooltool graphy thingie, and lo and behold, there had been 5 blips during the year! and the one the doc was worried about? why that was the smallest of the blips. LOL  ;D silly man, he tried to get me all worried about nothing. LOL

I'll admit that I'm only about 90% compliant with my meds though. that's enough to keep the viral load down without making me so damned sick all the time. nearly every med I've ever taken (and I've tried a bunch of them) I take in a smaller than recommended dosage. My 130lb body and fast metabolism just doesn't like those full doses at all. It's all about the quality of life, and puking every day ain't quality.  ;) I can't do the "holidays" either. I tried that a couple of times because the side effects were just too much too handle. check the graph in my sig line, you'll see when I was off meds because my virus rebounds within 6-9 months to deadly levels when I'm not on any meds.

so my doc usually fusses at me about compliance; but I have to consider that I'm only puking 4-6 times a month now and not every day. Plus I've been alive 12 yrs (next month) longer than my doctor predicted when I was lying in a hospital with PCP on my bday back in 1996, so whatever dosages I've been taking couldn't have been all wrong.  ;)

best wishes and good health!
mikie  ;D
leatherman (aka mIkIE)


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

 


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