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RE: End of Road for meds?

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nurselisa41:
Hi Everyone:
  Sorry have been a lurker for a long time and usually seem to find my answers that way but I have a serious conundrum and am availing myself of all of your great wisdom  ;D.  I have been infected since 1991, needlestick injury at work that resulted in almost 2 cc's of infected blood at the time. My t-cells have never been over 300 and my VL never undetectable. I used to live in Balto, go to Hopkins and was in on all the trials when new meds first came out.  This turned out to be a very bad thing because they were switching me around left and right back then.  I now live in WY and have a great ID doc in Billings, MT. The problem is that I am now resistant to all NNRTI's, most NRTI's and within a millimeter of being resistant to PI's. 
  My latest meds which I've been on for 9 months are Reyataz, Truvada, Norvir, DDI and Saquinavir; CD4 63, 4%,  VL 42,800.   We did the assay test for that new class of drug and my virus is not compatible for it to work.

Here's the $64,000 question....Except for my labs, I'm healthy as a horse, as my doc says "the healthiest dead person he's ever seen"  I work out, I take all kinds of alternative meds and except for being constantly tired and unable to taste anything, do pretty well.  I am now in an argument with my doc about going off meds....I mean, geez..if they aren't working, why take them?  Maybe they are doing more harm than good.  My take on all of this is that perhaps it's better to go off for a while, wait for some new drugs down the road...I understand you need at least two new ones these days....and in the meantime gain back my sense of taste, proper bowels, etc.   The doc says I'm trying to commit suicide when that is absolutely the last thing on my mind.

So all of you wonderful people, any ideas?
Lisa in the wilds of Wyoming :-*

vokz:
Lisa,

I really hope you donít think that silence means that people arenít reading that.

That moving post captures what every one of us here almost certainly dreads and probably leaves us all choking something back and wondering what we can say that isnít woefully inadequate.

Clearly it has to be your choice, but I would really urge you to think very hard about that statement that the drugs arenít working.

None of us can argue that the drugs are achieving their optimum goal, but does that really mean that they arenít still doing something to slow this infernal virus?

You are facing a gut wrenching choice Ė so, whatever you decide, I donít think anyone could (or would) judge you Ė but please take your time on this one and donít rush anything.

HUGS

Mark

BT65:
Lisa, staying on or going off meds is such a personal choice.  I, myself, wouldn't go off meds.  Have you discused with your doctor using maybe Isentress or Prezista (sp)?  Vokz is right, no one would judge you if that's what you decided.  I urge you to do some soul-searching before making that decision.  The meds might be the only thing that's keeping your CD4s from plummeting to 0 and your viral load from skyrocketing; that would be the true "conundrum." 

Like I said, the choice is ultimately yours.  But please be careful.  Hey, join us in the women's forum (if you feel like it).
Peace-
Betty

thunter34:
I'm with the others.  I understand and support whatever choice you make, but personally I would hold onto the meds currently taken.  If you feel healthy as a horse and your doc concurs, the meds obviously aren't creating immediate havoc on your system.  And like Betty says, they may be keeping things at the state they are. 

I would so hold onto that regimen for right now, but that's just my opinion.

Remember we are here to support you whatever way you choose, and I strongly second Betty's suggestion you join in with the gals in the Women's Forum.  They're Class A ladies - I can't see how it wouldn't be good for you.

Best of luck.

megasept:

--- Quote from: nurselisa41 on January 17, 2008, 12:34:51 PM --- I am now in an argument with my doc about going off meds....I mean, geez..if they aren't working, why take them?  Maybe they are doing more harm than good. 
Lisa in the wilds of Wyoming :-*

--- End quote ---

Lisa: Hi.

Beyond the "it's your decision" approach, I think you're asking medically whether you'd be better off with no meds. That is a reasonable question not just for you, but for everyone. Of course powerful drugs taken for years do some harm (ie, kidneys, heart). So does HIV, free radicals, aging, etc. To treat or not to treat is an "on the balance" question.

We don't have (and I don't want) all your lab results, but why not take them to another Specialist for analysis/prognosis? Just because "undetectable" is achievable for many, it's a pipe dream for some. Moreover, VL may mean a whole lot less than CD4s and ratios. I just finished 7 YEARS OFF meds. 1991 was my year too, and I have only been treated once 1997-01 with 3TC+D4T. I am currently on Insentress and Truvada and don't even have my first blood work yet since it's only been a few weeks. Insentress (1 of Betty' suggestions) did wonders for my friend with a 20 year AIDS diagnosis (I believe he is undetectable right now) and more fingers than CD4s. He's a "salvage therapy" patient, and possibly you are a bit better off than that group of old warriors. Your description of your general health (stamina, etc) is better than his, which makes his therapy results encouraging.

So this guy who just went on meds, thinks your question should be answered by more than one MD with your file in hand. Since each of us is different, and changing constantly (living organism), what we really need is a doppelganger, a personal guinea pig just for each of us. Let us know (or PM me) how this all pans out.

8)   -megasept  PS Wyoming...So cool!


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