RE: End of Road for meds?

[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  .  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 don’t think that silence means that people aren’t 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 isn’t 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 aren’t working.

None of us can argue that the drugs are achieving their optimum goal, but does that really mean that they aren’t still doing something to slow this infernal virus?

You are facing a gut wrenching choice – so, whatever you decide, I don’t think anyone could (or would) judge you – but please take your time on this one and don’t 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]

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

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.

   -megasept  PS Wyoming...So cool!

[mjmel]

Since you asked, stay on the drugs.

Mike M

[nurselisa41]

First, I'd like to thank you all for your input...I knew I could count on you all for some good answers!

I'm not intending (yet) to go off meds and am hoping to find another specialist around to get a second opinion.  I guess the biggest thing right now is finding out how much "harm" there is in staying on this regimen when I am so close to be resistant to the PI's.  I would love to try the Isentress but can't right now until I have a second new drug to add. Like I said, I had the assay for the feasibility of going on Selzentry along with it but bombed on that test.
And, my decision to move so far away from the treatment arena is not helping with access to the newest and latest. I must say, though, that living in WY is probably why I'm doing so well.  Clean air, less than 7000 people in 4,182 sq miles (that's my county) and my area is a magnet for many holistic practitioners

Someone had questioned whether my drugs really weren't working..that's from my doc, not me.  It's his opinion that they aren't which is when the argument about staying on them developed.

But basically, I'm still on the fence,  but don't want to "do" or "not do" something that could have long lasting effects down the road. I have been a rather maniacal advocate for my own well being for so long and this is the first time I am really questioning the rationale of staying on this stuff.  I loved the idea of a doppelganger, Megasept..if only, eh?

Anyway, before I ramble on much further....you all have my deepest gratitude and respect and I will check out the women's forum, too! Also, feel free to PM with any more suggestions.  Thank you so much for your support!!!
Lisa
www.wildwyomingimages.com
http://wyominggal010.stumbleupon.com

[leatherman]

why do i keep taking a regimen that still makes me puke after 4 yrs? Cause it works. I say if it's not broke, then don't fix it. if your numbers are holding fairly steady, then keep on taking the meds for now and don't upset the apple cart. go get a second medical opinion in the meantime 

[aztecan]

Hey NurseLisa.

I live in the wilds of New Mexico, so I know what you mean about the wide open spaces. I love it, even if it did get to minus 16 here last night.

Now, about the meds. I understand you dilemma. I would probably stay on them because of your history.

From what I know of drug holidays, those who attempt them who have had very low CD4s tend to do the most poorly.  In other words, their numbers typically drop like rocks.

So, just for the sake of argument, I would say, stay the course for the time being and find that other specialist for a second opinion.

I haven't heard of anyone losing their sense of taste for a while. It was usually Norvir that did it back when it was taken full strength as a part of a cocktail.

I guess it could be the Videx, though. Another golden oldie I hadn't heard too much about recently.

Whatever you decide, let us know and don't be such a stranger.

HUGS,

Mother Mark (as some have called me).

[AlanBama]

Hi Lisa

I love the fact that you are the "healthiest dead person your doctor has ever seen."  I also understand exactly how you feel.   I am blessed in that I have not "burned thru" all the meds available, and Viramune and Truvada still manage to keep my virus undetectable.

I believe if I were in your shoes, I would continue to take my meds.  Stopping them for awhile to get a feel of what "normal" might feel like sure is tempting though isn't it?  I've been tempted to go over to the "dark side" myself over the years, but have always resisted.

Keep on doing what you are doing to stay as healthy as you can, enjoy your life, and join in the forums more often!  You seem like a great person, and I hope we get to know you better.

Love & hugs,

Alan

[allanq]

Lisa,

A new NNRTI called "Intelence" was just approved. It's supposed to work even if you're resistant to the other NNRTI's.

Isentress is a whole new class of drugs (integrase inhibitors), so that might be a second drug.

Fuzeon is an entry inhibitor, which might be a third drug for an effective combo. The bad part of Fuzeon is that it is injected twice a day, and after some months, the injection site reactions can become painful. (However, I managed to stay on it for over three years).

Prezista (+ Norvir) works for some people who have resistance to other protease inhbitors.

I'm just guessing if any of the above options would work for you. But you could at least discuss them with your doctor.

Good luck, and let us know how things work out.

Allan

[allanq]

Although the ideal anti-viral regimen will result in an undetectable viral load, there is evidence that suggests there is some benefit to continuing anti-viral therapy even if the drug regimen is not fully suppressing the virus.

Article from AIDS Clinical Care

Allan

[nurselisa41]

Thanks Alan, Allan Leatherman and Mother Mark for your recent posts!
   I have an appointment next week with a new doctor in Denver and I am taking all of your suggestions along with me!  After much searching I found this guy and had a lovely conversation with him over the phone.  He had some quite innovative alternatives that we are going to check on seeing if I can handle.  I should have told you all in my intial post that I have several other problems (MS being the main one) that make me a bit of a problem patient and this guy has actually got two other patients in my boat.  I'll let you know what he came up with.  Thanks for the link, too, Allan..that was awesome!
   I would just like to say, one more time, how much I appreciate all of you and I hope to get to know you all better!
Love!
Lisa

P.S. just keep your fingers crossed our arctic weather out here allows me to make the appt!! Yesterday was 17 below!!!