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Author Topic: The next logical progression - Med failure  (Read 1909 times)

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Offline Life

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  • Posts: 2,389
  • Member 2005
The next logical progression - Med failure
« on: July 30, 2007, 10:41:39 PM »
I have been on study since I started ARV's (2 years).   The combo - Kaletra,  Truvada or Epzicom (blinded study).   My numbers are nothing but getting better and better.   My study runs out at the end of this year.   I have two great insurance plans and I have not had to use them yet other than the diagnostics of being postive.   I am reluctant to jump off the study just yet.   I like the idea of giving something back to science even if the study I am is a pretty much "no-brainer" with really no risk.   I have asked my doctor to look at other studies out there for me.   He says there is a new Merik drug twice daily that I may qualify for, but I have no idea what it is, nor will he ever endorse something that he feels the slightest bit threatening.   

I am just a bit fearful of getting into my insurance.   I know, thats why I pay the preimiums for it.    My study nurse says "if it aint broke, dont fix it."  In other words, the current regimen you are on should continue until it fails.   I am wondering when that will be??  Years??  Dr. Ben says, do not worry about treatment failure as you are very earily into all of this.   I guess I am just putting myself way into the future again.   However, I am also preparing for things that WILL eventually come...

I absolutely hate the idea of being tied to an insurance company, I hate the idea of having to be tied to a certain job because of benefits.   Now I am having to face that fear...  At least while I was on study, I knew how long I was "safe".   Now that safety net is coming to an end...   

What would you do if you were me??

Thanks for any ideas..

« Last Edit: July 30, 2007, 11:03:49 PM by Life »

Offline aztecan

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  • Posts: 5,517
  • 32 years positive, 60 years a pain in the butt
Re: The next logical progression - Med failure
« Reply #1 on: July 30, 2007, 11:00:53 PM »
Hey Eric,

I don't know. I've never had a treatment failure. I have switched meds because of side effects (only twice), but never because of a viral breakthrough.

I wouldn't worry about it until it happens. Then, do what you must to stay on top of things.


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

Offline JamieD

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  • Posts: 259
Re: The next logical progression - Med failure
« Reply #2 on: July 31, 2007, 12:39:59 AM »
So in 22 years you have not had a single treatment failure?
Wow. If I am interpreting that right that is very encouraging to me, because I have been afraid that I would fail in a few years or so.

Were you ever on AZT-monotherapy way back when that was all there was?

Offline Miss Philicia

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  • Posts: 24,793
  • celebrity poster, faker & poser
Re: The next logical progression - Med failure
« Reply #3 on: July 31, 2007, 12:43:15 AM »
Mark is way outside the experience of most other long term survivors from what one reads here.  I've had numerous treatment failures in 15 years, so many I stopped counting.
"Iíve slept with enough men to know that Iím not gay"

Offline Blixer

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  • Posts: 712
Re: The next logical progression - Med failure
« Reply #4 on: July 31, 2007, 01:08:04 AM »
You bring up a really tough question.  I totally understand the insurance thing.  It's kind of ironic that we pay for it for years but then don't want to start using it for the "big ticket" items just yet.  Yet, I do see the logic in what your nurse says.  You are doing great on the current regimen.  So why change?  You might come up with some good reasons, but going from one dosing a day to two dosings a day would seem to be a negative to me.  And you know that what you have works.  I was lucky that the study I got in runs for 2 years after the last person enrolls.  So my two year clock just now started ticking.  I'm sure I'll be wondering the same things that you are 18 months or so down the road.  I do know that I'll probably ask about other studies.  My cocktail seems to be working.  So why would I want to change.  For me, the only reason would be the Videx EC and the potential for PN and pancreatitis.  So lots of things to think about.  Now that I've kind of wandered all over the place I know I haven't helped at all.  Bottom line... if what you are on is working and there isn't a good reason to change and you have the insurance, I'd tend to take the conservative approach and give that very strong weight.  I'd look at other options but would need a really good reason to change.

Good luck with the rest of the study.  I'll be anxious to know exactly what meds you have been on for the past two years.

Hugs my friend!
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


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