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latest results... disease progression? :-[

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Miss Philicia:

--- Quote from: survivor703 on October 10, 2012, 12:48:56 PM ---I didn't know... I've read so many web sites and I kept seeing that term come up... it's painted a very bad picture in my mind of some patients trying every drug out there, and finally on the last regimen, which I believe is a shot? while hoping and praying that the shot works for the rest of their life.

--- End quote ---

This is why it's often counter-productive for a newly diagnosed person to read things on the internet.

Resistance issues were more common in the long-term survivor group, because before HAART was the standard in late 1996 patients were put on just one drug, or two drugs from the same class. So they ultimately developed a lot of resistance issues. This is all why researchers had to come up with HAART. Then over the next decade they had to develop even more drugs for people that had developed resistance issues, simply because when HIV/AIDS treatment was new nobody knew quite what was going on.

Personally I was, unfortunately, one of those patients. I was on my last regimen available, or at least next to last just six years ago. But since that time lots more new medications have arrived (and there are more to come), so even I have a lot of options left.

But you aren't me so you shouldn't have to have those worries, even if you fuck your entire regimen up and have to switch to another one, you won't be ANYWHERE near your last regimen.

I hope that explains that topic :)


--- Quote from: Miss Philicia on October 10, 2012, 01:00:06 PM ---This is why it's often counter-productive for a newly diagnosed person to read things on the internet.

--- End quote ---

Miss P is, once again, right on. WEB MD (for example) caused me more stress and concern than was EVER necessary. Conversely, you can peruse thousands and thousands of websites and comes up with differing opinions about everything.

There are just so many what if situations could get hit by a double decker bus tomorrow according to the SMITHS :)

..but then again, maybe not.

No sense in playing mental gymnastics over scenarios that may never happen.

Just do it :)


--- Quote from: survivor703 on October 10, 2012, 11:21:11 AM ---Well, my fears are simply that once I start medicine that I will fail at taking the medicine at the same time every day for the rest of my life. If I understand correctly, that's what I need to succeed. I'm also afraid because I’m a big guy and they say the virus causes inflammation… and now I’m thinking I could have a heart attack or something any day now. I have had some aches come and go, and I think that’s because of hiv inflammation… I’m not sure though. Like the other day, my elbow felt like I had banged it into a brick wall, and I couldn’t lie on it or anything, but the truth is I there was no trauma to my elbow.

--- End quote ---

OK, its wonderful you have clarified and got specific.

1)  For the coming years, it seems clear we will be on daily medicine, but there has been talk for a few years that weekly or monthly dosing is imagineable.

2) When you first start your HAART medicine, precise timing is important.  Even that varies, however, depending on your exact combination, and your doctor's philosophy about this.  After someone is undetectable for awhile, and depending on the exact combination, some HAART combos do not require strict, always at the same time, dosing.  Your doctor will explain this.  Also, eventually, when you are undetectable, 100% adherence is not critical, rather a few missed doses a year are perfectly fine.....

3) Yes, HIV causes inflammation.  But being on HAART will reduce your body's stress and reduce your inflammation.  These are technical issues, you shouldn't be worried about them everyday and you shouldn't extrapolate, you can discuss these concerns with your doctor, based on your experience.

--- Quote from: survivor703 on October 10, 2012, 11:21:11 AM ---It was my hope that I would be able to keep the virus at minimum levels and maintain a good cd4 count while for as long as possible, but it seems like that time is coming to an end quickly. So now I’m trying to convince myself to go ahead and start the meds… and I’m considering which med to start with. An internet friend of mind said to start with a classic ARV treatment,  not like the quad or atripla, but a less popular (but potent one), so that I wouldn’t have to worry about running out of options later…

And I just fear losing it all and having to go on public assistance… I mean, look at our economy. It’s scary. And it’s very unstable. But I guess I just have to jump out in faith. Things are very stable with my job right NOW, but I’m thinking about years into the future… you know?

--- End quote ---

Hey, everyone has their own genetics to deal with. I only made it a few months without HAART and in retrospect it would have been better for me to start right away, during acute infection.

So, there's not much to do about when you need to start. Water under the bridge.

4) What everyone else said - don't worry about side effects, until you get them... Nobody can predict what you might get, if any at all.

5) Don't take offhand second hand info about what combo is right for you.  Your EXPERT doctor is going to recommend the combo that suits a number of your own, special, personal, needs...   So you are going to negotiate with him/her which one will be the first combo, and just try it out.  If it doesn't work out, you will switch.  Thats the way we all do it.


You are going to be adherent.  You are going to be happy when you are undetectable.  Great relief emotionally, psychologically, and for your body!!  There are benefits for your partner(s), as well.


Affording it.  And projecting into an uncertain economic future, will I always have access..??   Join the club here.  Most of us have to deal with these kinds of challenges and thus also these fears.  Not everyone, of course, has the same hardships to deal with in maintaining access to care. 

On this matter, you can start asking very specific questions here, and also it is an area in which local help, and peoples experiences accessing care in your locale, are very helpful and maybe essential.   Here, you need to speak to social workers and or people with HIV in your area and learn how its done for someone in your situation. 

There are great challenges to be met here, and some are or can be life changing, yes. 

Fear eats the soul.  On balance meds reduce the risk of heart attack, while uncontrolled HIV increases it. There you go. Your numbers are good. You have time to decide. The internet is perhaps less of a friend than your doc in this situation.

- matt[/font


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