Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
October 01, 2014, 05:04:44 PM

Login with username, password and session length


Members
Stats
  • Total Posts: 640700
  • Total Topics: 48668
  • Online Today: 241
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: For those of you who might be questioning HAART, or maybe when to start.  (Read 24196 times)

0 Members and 1 Guest are viewing this topic.

Offline blackwingbear

  • Member
  • Posts: 363
  • Hello, all you happy people....
    • THE DARK MIND OF BLACKWINGBEAR
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #100 on: March 09, 2010, 02:07:53 PM »
Government(s) should ensure that treatment is available for all who need and want it. That's a separate issue, though.

Ah, another dreamer like myself.
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,851
  • How am I doing Beren ?
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #101 on: March 09, 2010, 02:18:54 PM »
Buffaloboy . I am sincere in hoping you get the physiological help you need to deal with your fear of taking the meds that will save your life .

Insisting every one zero in on your fear of side effects to control the conversation will not be very helpfull for you or anyone else .

Offline tommyga

  • Member
  • Posts: 12
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #102 on: March 09, 2010, 02:27:45 PM »
Hi Everyone,

I thought I would chime in on this one because the title immediatley caught my attention, and reading all of the posts have severly distracted me from my workday. lol. I was diagnosed around one year ago, and I had great numbers, until the end of last year when my VL spiked. I think it was a blip due to strep throat, but life has gotten a bit crazy since then and I haven't been giving HIV/myself the attention it/I deserves, my insurance dropped the healthcare system I was using, and I haven't gotten around to finding a new ID(NYC if anyone has any recommendations, I have United).

So in short, I need to get better at this. I know I should, and most all of your posts are fears that I have. The possibility of others having to pick up the pieces in the event of my untimely death, HIV going untreated causing more health issues, etc, etc. It is unfortunate, that this diagnosis simultaneously is asking me to grow up, become a healthcare/prescription drug expert, face my mortality, battle with my feelings over self - worth, all at the same time, and still try to make friends in a new city.

I'm certainly not asking for sympathy, or someone to say it's okay to do what I'm doing, or necessarily to be scared into calling my doc with every issue. I just wanted to say that I think this is an important thread, and I thank everyone for participating. I needed to read it. If I go into the doctor in two weeks, and they tell me I need meds, I'll start, as scary as it may be. I really don't feel like the idea of taking medication daily is harder to deal with than the initial diagnosis, and the physical and mental drain that has been.

Reading back over what I wrote I'm not sure I'm making much sense. I guess to sum up, I beleive in myself, and I think I should start doing more for myself, and making sure I'm still around to see the final Harry Potter movie, and Avatar 2(fingers crossed).

What I really get out of this is you can't ignore your diagnosis, and I've been doing that for three months. Needed this little wake-up call.


Online Miss Philicia

  • Member
  • Posts: 24,142
  • celebrity poster, faker & poser
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #103 on: March 09, 2010, 02:33:25 PM »

Reading back over what I wrote I'm not sure I'm making much sense. I guess to sum up, I beleive in myself, and I think I should start doing more for myself, and making sure I'm still around to see the final Harry Potter movie, and Avatar 2(fingers crossed).

What I really get out of this is you can't ignore your diagnosis, and I've been doing that for three months. Needed this little wake-up call.



meh, relax a little and don't beat yourself up -- your cd4 count was 764 five months ago so you have a bit of a buffer zone, even if your high viral load has caused you to lose another couple hundred since then.  Still not shoddy if it's 564 now, but yeah don't procrastinate too much longer.

ps: you neglected to mention Tron Legacy-3D coming in December :)
"Iíve slept with enough men to know that Iím not gay"

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,851
  • How am I doing Beren ?
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #104 on: March 09, 2010, 02:34:43 PM »
Hi Tommy ... You have a great attitude and its encouraging that this topic has had a positive influence on you .

Offline griezzel

  • Member
  • Posts: 46
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #105 on: March 09, 2010, 03:09:08 PM »
I'm baaaack  :-*

Ok, point by point:

..without meds, you will die.  Period.  

With or without meds, EVERYONE dies. Some people happen to be OK with that, like it or not.

Quote from: Moffie65
I encourage you to join in the learning and please try to stop being so critical about the reality of HIV/AIDS

There no single "truth about HIV infection" about which people do not not know. Especially anyone who has made it to this forum. I've heard rumors that some younger people are dangerously misinformed, so can only conclude that it is that small group of idiots you are posting for. It is still a little unclear who is "debating the efficacy of" HAART and in what way.

Quote from: Moffie65
Side effects from the drugs are not fatal and a mere inconvenience to a life with HIV.

Not fatal? What a relief! But then, I don't think fear of death keeps anyone from starting meds. Usually, I believe, it's fear of side-effects that will have a significant negative effect on daily life. What a couple of us here are trying to say is that THIS is the problem that needs addressing. There are surely other reasons many people would post-pone starting ARVs, but it seems the most common reason, cited in many surveys.

Quote
A second major finding of the survey is that many are concerned about ARV side effects and, as a result, avoid or stop HIV treatment. Overall, 26 percent of the respondents reported that they had elected not to seek treatment because they believe that ARV therapy causes too many side effects, with responses from Europe (42 percent) and South Africa (29 percent) being most prevalent. Whatís more, 34 percent of treatment-experienced survey respondents discontinued ARV therapy primarily because they believe it caused too many side effects.

Side effects that survey respondents are most worried about include lipodystrophy, lipoatrophy and other body-shape changes (58 percent of survey respondents); gut-related problems such as nausea and diarrhea (54 percent); fatigue or anemia (54 percent); and liver disease (54 percent).

Respondents in Latin America and North America voiced significantly more concern about many potential side effects than respondents from other regions, while African respondents voiced significantly less concern.

Female respondents in most regions, especially those in Europe, worried more than male respondents in their respective regions about bone loss and face or body shape changes.

ďATLIS results indicate there is still a strong need to educate HIV-positive patients and the world around them. The findings demand an increase in global HIV and AIDS literacy,Ē said Josť Zuniga, PhD, president and CEO of IAPAC. ďIt is critical that we empower HIV-positive patients to take an active part in the management of their disease by educating them on the importance of adhering to their treatment and teaching them about the innovations in treatment that could improve their overall quality of life.Ē
http://www.aidsmeds.com/articles/hiv_treatment_stigma_2211_15058.shtml

I am not saying there is not an ongoing need to educate people of the consequences of HIV and the many horrible things that will certainly happen to us eventually, that are all the more likely the weaker our immunes systems become. But there is an increasing need to educate people about the new drugs and try to ease their fears of the possible side-effects.

I'm speaking from personal experience here. I was concerned that the meds could have had a huge negative impact on my life. I already suffer from debilitating fatigue, relish every ounce of energy I can find and crave being clear-headed and alert. The thought of voluntarily causing myself to feel any worse than I already do was monumental. I am happy to report that, for me so far, after one week, the side-effects of Atripla are minimal and easily manageable.

Overcoming that intial hurdle was helped by reading here the accounts of many other people just starting Atripla. It was not affected by things like your OP. (That does not mean I do not appreciate your sharing, and as I said, I personally benefited from it.) But then, I did not need to be told those things.



Quote from: Moffie65
I encourage you to join in the learning and please try to stop being so critical about the reality of HIV/AIDS

I meant to only offer my opinion about how best to approach convincing a large number of people not to be afraid of treatment.
« Last Edit: March 10, 2010, 08:16:53 PM by griezzel »

Offline buffaloboy

  • Member
  • Posts: 159
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #106 on: March 09, 2010, 03:13:16 PM »
Buffaloboy . I am sincere in hoping you get the physiological help you need to deal with your fear of taking the meds that will save your life .

Insisting every one zero in on your fear of side effects to control the conversation will not be very helpfull for you or anyone else .

Don't worry about me. I'll be fine.

It's interesting that you say I'm 'controlling the conversation'. Are we not allowed to discuss our own views and experiences anymore then? Are we all meant to agree with one another all the time?

Offline RapidRod

  • Member
  • Posts: 15,288
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #107 on: March 09, 2010, 03:22:41 PM »
Ignorance is not a view.

Offline buffaloboy

  • Member
  • Posts: 159
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #108 on: March 09, 2010, 03:26:53 PM »
I would just like to point out for anyone who hasn't seen my posts in other threads, that I DID start HAART last year and found the side effects to be intolerable, not just a minor 'inconvenience'. In fact, they completely floored me and for the short time that I was on the drugs I was literally unable to have any life whatsoever.

Yes, I suppose it was better than being dead but, in all honesty, not much.

Online Miss Philicia

  • Member
  • Posts: 24,142
  • celebrity poster, faker & poser
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #109 on: March 09, 2010, 03:31:15 PM »
I would just like to point out for anyone who hasn't seen my posts in other threads, that I DID start HAART last year and found the side effects to be intolerable, not just a minor 'inconvenience'. In fact, they completely floored me and for the short time that I was on the drugs I was literally unable to have any life whatsoever.

Yes, I suppose it was better than being dead but, in all honesty, not much.

Generally when one encounters intolerable side effects one halts the medication and moves on to another one, but I'm sure you know this.
"Iíve slept with enough men to know that Iím not gay"

Offline buffaloboy

  • Member
  • Posts: 159
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #110 on: March 09, 2010, 03:31:42 PM »
''Ignorance is not a view.''

It is ok for other opinions, apart from your own,  to exist, y'know.

And  having had first hand experience of HAART, I can hardly be described as 'ignorant'.
« Last Edit: March 09, 2010, 03:33:14 PM by buffaloboy »

Offline RapidRod

  • Member
  • Posts: 15,288
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #111 on: March 09, 2010, 03:34:03 PM »
''Ignorance is not a view.''

It is ok for other opinions, apart from your own,  to exist, y'know.

And  having had first hand experience of HAART, I can hardly be described as 'ignorant'.
How many combos have you tried?

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #112 on: March 09, 2010, 03:59:36 PM »
I would just like to point out for anyone who hasn't seen my posts in other threads, that I DID start HAART last year and found the side effects to be intolerable, not just a minor 'inconvenience'. In fact, they completely floored me and for the short time that I was on the drugs I was literally unable to have any life whatsoever.

Yes, I suppose it was better than being dead but, in all honesty, not much.

   Buf, perhaps if you made your own thread regarding the issues you've had people would have a better understanding of where you are coming from.  Also, if you don't mind me asking, what are your plans?  Speaking in terms of your numbers of course, do you plan on going back on meds eventually?  Just curious...

   Of course I ask this pretty much figuring you are going to eventually start (hoping atleast), which leads me to wonder why this line in the sand is being drawn by you and the others.
I despise the song Love is in the Air, you should too.

Offline Matty the Damned

  • Member
  • Posts: 12,228
  • Ninja Please
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #113 on: March 09, 2010, 04:02:43 PM »
   Buf, perhaps if you made your own thread regarding the issues you've had people would have a better understanding of where you are coming from.  Also, if you don't mind me asking, what are your plans?  Speaking in terms of your numbers of course, do you plan on going back on meds eventually?  Just curious...

   Of course I ask this pretty much figuring you are going to eventually start (hoping atleast), which leads me to wonder why this line in the sand is being drawn by you and the others.

He did. He can't take pills because he and his doctor don't "gell".

MtD

Online Miss Philicia

  • Member
  • Posts: 24,142
  • celebrity poster, faker & poser
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #114 on: March 09, 2010, 04:05:25 PM »
He did. He can't take pills because he and his doctor don't "gell".

MtD

Wasn't it more like three doctors?
"Iíve slept with enough men to know that Iím not gay"

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #115 on: March 09, 2010, 04:23:06 PM »


  I always wanted to do this....  here it goes:


  *face palm*
I despise the song Love is in the Air, you should too.

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,703
  • 31 Years Poz
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #116 on: March 09, 2010, 04:32:15 PM »
I don't see any line being drawn by anyone, rather, I see a couple of folks, who have fears about HAART, that they seem unable to address. Criticizing prevention efforts, is relatively futile, because they are what they are. All we can try to do, is to educate and help people prepare themselves, if they need HAART. As much as I would like to help you guys, I'm not qualified because your issues, go far beyond any fears of HAART and I do not believe you find any answers by continuing to bicker about what everyone should do, to help you get over your fears of HAART.

Great thread Tim and everybody and with that, I now return you to your regularly scheduled bicker.

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #117 on: March 09, 2010, 04:38:05 PM »
I wonder how long those listed above as not starting HAART becuase of concerns of side effects wait.  I'd bet that they wait until they have no choice but to die or start meds with a significantly damaged immunity system and all sorts of nasty OI's. 

On one hand folks bitch about the 'normal' looking people in HIV med advertisements.  Then others complain that they think the drugs are going to poison due to not knowing how good the newer meds really are.  I'm really not sure what one can say to make either side happy.  Of course, we know the motivation for using attractive models for ads, but what else can we do?  Reading through these forums will show that meds can lead to a normal existence.  Hell, there are several positive accounts of how meds improve life with minimal side effects right here in this thread. 





Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline PeteNYNJ

  • Member
  • Posts: 979
  • When life gives you AIDS...make LemonAIDS!
    • Dance for Me, Puppets
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #118 on: March 09, 2010, 06:54:10 PM »
I agree with Skeebo about starting your own thread, Buff.  Maybe if you spell out your situation without feeling you have to defend your position, it will come across better.  I would like to read what you plan to do about your aversion to HAART but I don't think this forum is the place to talk about it.

Moffie's OP is so perfect for the point he is trying to get across that I would hate for it to get closed because of fighting back and forth. 

Pete

Offline buffaloboy

  • Member
  • Posts: 159
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #119 on: March 10, 2010, 05:11:51 PM »
I somehow managed to miss this above, but I've re-quoted it (with my emphasis added) as I think it's important to this discussion:

''A second major finding of the survey is that many are concerned about ARV side effects and, as a result, avoid or stop HIV treatment. Overall, 26 percent of the respondents reported that they had elected not to seek treatment because they believe that ARV therapy causes too many side effects, with responses from Europe (42 percent) and South Africa (29 percent) being most prevalent. Whatís more, 34 percent of treatment-experienced survey respondents discontinued ARV therapy primarily because they believe it caused too many side effects.''

So, a quarter of respondents hadn't sought treatment because of fears over side effects, and around a third stopped taking them because of similar concerns and experiences. These are not small numbers by any means and, although I've said it before, it bears repeating: something, somewhere isn't working.

Rather than side effects being brushed aside as a 'mere inconvenience', perhaps the time has now come to have an open and honest discussion about the negative impact the drugs can have on the lives of some of those who take them and importantly, what can be done so that patients don't feel as if they must suffer in silence.

I still contend that this thread is a good idea for the very small minority who may not be aware of the extreme damage -including death- that can be wrought on the body by untreated HIV. However, as I've been trying to point out, and as the above study makes abundantly clear, there's another side to this issue that I don't think has ever been properly addressed. When, or rather, if, this happens, the number of people who report they 'can't wait' to start treatment, could well go through the roof.

And that's what most people here, along with the doctors, want. Isn't it?

Offline Matty the Damned

  • Member
  • Posts: 12,228
  • Ninja Please
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #120 on: March 10, 2010, 05:23:30 PM »
Rather than side effects being brushed aside as a 'mere inconvenience', perhaps the time has now come to have an open and honest discussion about the negative impact the drugs can  have on the lives of some  of those who take them and importantly, what can be done so that patients don't feel as if they must suffer in silence.

As long as I've been positive, all I've ever heard people talking about are HIV medications and their side effects. This whole website is dedicated to HIV medications and their side effects.

I don't doubt that folks like you suffer Buff, but y'all certainly don't do it in silence.

MtD

Offline buffaloboy

  • Member
  • Posts: 159
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #121 on: March 10, 2010, 05:53:29 PM »
Rather than side effects being brushed aside as a 'mere inconvenience', perhaps the time has now come to have an open and honest discussion about the negative impact the drugs can  have on the lives of some  of those who take them and importantly, what can be done so that patients don't feel as if they must suffer in silence.

As long as I've been positive, all I've ever heard people talking about are HIV medications and their side effects. This whole website is dedicated to HIV medications and their side effects.

I don't doubt that folks like you suffer Buff, but y'all certainly don't do it in silence.

MtD

Be that as it may, Matty, so very often it seems as if the concerns are, to all intents and purposes, falling on deaf ears ('mere inconvenience').

Offline Matty the Damned

  • Member
  • Posts: 12,228
  • Ninja Please
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #122 on: March 10, 2010, 06:01:05 PM »
Be that as it may, Matty, so very often it seems as if the concerns are, to all intents and purposes, falling on deaf ears ('mere inconvenience').

Yeah I get it. I suspect this is at the root of your problems with your doctor(s). You don't feel like you're being listened to. You wanna have your point of view validated.

Which is fine. I dig it. But being listened to is not the same has having everyone agree with you. Check out just about every thread you've posted in here. People are listening to you, we know that from the responses you get. It is just that some of us don't agree with everything you say.

And that's good too. It's how discussions go.

As far as the side effect thing goes, it seems pretty clear to me. Don't take the pills - die a ghastly death as outlined in the OP by Daddy Tim. Take the pills and you run the risk of side effects, which are generally a mild inconvenience but for some can be more serious.

Really, it's not rocket surgery.

MtD

Offline buffaloboy

  • Member
  • Posts: 159
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #123 on: March 10, 2010, 06:12:59 PM »
This isn't about me and I think the results of the study that show how many people don't start, or stop treatment, because of side effects, show that a there's a much broader issue here, as much as certain people might not like, or are unable, to acknowledge that.

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #124 on: March 10, 2010, 06:14:25 PM »
Be that as it may, Matty, so very often it seems as if the concerns are, to all intents and purposes, falling on deaf ears ('mere inconvenience').

No it doesn't.  See Buf the problem is that we've heard it all before, much of it came from our own lips and keyboards.  I had issues with meds, much like you, only difference is I fought through it for 4 years like an idiot.  Just recently I switched combos and the results have been nothing less than superb, seriously.

Like I said, my journey started 4 years ago.  Reading about all these side effects, how could I not be scared?  I wrote about it here in the forums about how I was staying with my friends so they could watch out for me after I took my first dose.

Constant nausea became the norm and it was always so severe.  I may get it now from time to time, but it is workable, nothing like that room spinning crap I dealt with before.  The best part is it seems like my depression has lifted....

Anyways...

We've all been afraid, dealt with, and learned other options perhaps when dealing with the side effects from meds.  To  be quite frank with you Buf, conquering these fears or dealing with whatever  comes our way is a personal task one must take on, there is nothing the group can really do for you other than holding you down and force feeding it to you.  Which is not working, and it makes neither side wrong BTW.

I might be wrong, but my guess is eventually you will be taking meds once again.  What leads up to that point is totally up to you.
I despise the song Love is in the Air, you should too.

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #125 on: March 10, 2010, 06:15:11 PM »
This isn't about me and I think the results of the study that show how many people don't start, or stop treatment, because of side effects, show that a there's a much broader issue here, as much as certain people might not like, or are unable, to acknowledge that.

So you're worrying about all the other people out there who have trouble taking their medication and you think we should form a super group to address the issue?  This kinda is about you as this forum is for the people who are members here and this post was directly addressed to "those of you whi might be questioning HAART".

Offline buffaloboy

  • Member
  • Posts: 159
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #126 on: March 10, 2010, 06:41:20 PM »
So you're worrying about all the other people out there who have trouble taking their medication and you think we should form a super group to address the issue?  This kinda is about you as this forum is for the people who are members here and this post was directly addressed to "those of you whi might be questioning HAART".

No, really, this isn't about me personally but thanks for your concern anyway. ;-)
« Last Edit: March 10, 2010, 06:46:10 PM by buffaloboy »

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #127 on: March 10, 2010, 08:36:03 PM »
Rather than side effects being brushed aside as a 'mere inconvenience', perhaps the time has now come to have an open and honest discussion about the negative impact the drugs can have on the lives of some of those who take them and importantly, what can be done so that patients don't feel as if they must suffer in silence.
Buffalo,
Side effects, YES.  I have been hospitalized many times because of medication sides.  Spent five years in a wheelchair for them also.  Permanently disabled because of the medications.  So, what do you want to talk about?  I'm not dead, and have spent the last 30 years, trying to educate about HIV/AIDS, and yet........  you still question my voracity.  Got news for you, if you take meds or don't is no skin off my nose, but I would be remis in my focus, and calling if I didn't try my best to get the truth of a deadly disease across to you so you don't end up grub food, six feet under.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #128 on: March 10, 2010, 09:06:16 PM »
You know what Buffalo, Iím going to undress right here on AIDSmeds.com.

I have been to hell and back, including dead once, with this disease, and I have to tell you the truth, I have on more than one occasion thought about just ending it all.  When you have life issues like your ďPERMANENTĒ disability notification from the Social Security Administration, and you sit there and read it for the first time; finally it dawns on you, ďI will never be able to get another job, or hold down a five day a week jobĒ.  Not because you donít want to, not because you donít need to, not because you donít ever want to work another day in your life.  NO it is simply because your body wonít let you do that.  So, you must reconfigure your life to live on what they send you monthly.  If your life expenses donít match what is coming in, you must sell your home, or your car, or whatever valuable you can get your hands on, and re-adjust your life to make sure you donít have to completely give up your independence. 

Meanwhile, you have to go to the bathroom to barf your guts out, or shit your brains out, but the Peripheral Neuropathy only allows you to CRAWL to the bathroom, and your knees are sore from the last trip over the tile floor.  Soon enough a wheelchair became part of my life, and I was there for five years.  Finally, I just kept spending more and more time standing and walking and getting some mobility back.  The pain remains mostly unbearable, but when I am living; it becomes bearable.  Yes, it is truly a cakewalk, if you like walking in shit.

However, the survival gene sets in, and you fight on.  Nothing in HIV/AIDS comes easy, nothing isnít worth the effort; we only ďSTRIVEĒ to keep some semblance of order and peace in our lives. 

The meds have allowed me to change most of all that.  Today, the PN is again increasing, however, so I am trying to work as hard as I can to stay ahead of the incapability I know is coming in a few years.  In the meantime, I am completing a two year project to completely restore a 21 foot 1986 Toyota Motorhome, and just last week, before that last snow/wind storm, we installed the new high grade headliner.  The bath is done, all with nice metallic glass tile.  OOOh.  When it is done, I will have added a value of over $10,000 over what I paid for it.  Yes, you must keep busy; you have to live each day as though it is your last; not because you have HIV/AIDS, but because you have life. 

Think about it, and now I will put my clothes back on.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #129 on: March 10, 2010, 09:10:28 PM »
This was a mistake.  Sorry.  I am ready for bed.  :-*
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline RapidRod

  • Member
  • Posts: 15,288
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #130 on: March 10, 2010, 09:17:08 PM »
This was a mistake.  Sorry.  I am ready for bed.  :-*
That's alright Tim, I didn't look til you said you put your cloths back on.  ;)

Offline Alain

  • Member
  • Posts: 680
  • I am.
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #131 on: March 10, 2010, 09:52:21 PM »
This was a mistake.  Sorry.  I am ready for bed.  :-*

Not in the least daddy Tim, and my only wish is for a good night sleep!  :-*

Offline fearless

  • Member
  • Posts: 2,191
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #132 on: March 10, 2010, 10:17:49 PM »
Thanks for the original post Tim.

I'm not quite sure why people are wasting time trying to convince a couple people with irrational fears about meds to overcome them, stop being so self indulgent. Let them be, I say. They'll learn soon enough.
There are plenty of people on the planet who would be envious to be in their position, to say, nah, I'll go against all common sense and scientific evidence and not take the life saving medication that I have access to, cause I'm worried I might get the squirts or something.
Suck it up you wusses and stop wasting everyone's time.
Be forgiving, be grateful, be optimistic

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #133 on: March 10, 2010, 10:28:37 PM »
This was a mistake.  Sorry.  I am ready for bed.  :-*

  That was not a mistake.  I'll accept your apology though for going to bed. ;)
I despise the song Love is in the Air, you should too.

Offline Jeff G

  • Administrator
  • Member
  • Posts: 11,851
  • How am I doing Beren ?
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #134 on: March 10, 2010, 10:45:49 PM »
Thanks Tim for having the heart of a lion despite what your body is going through .


Offline tednlou2

  • Member
  • Posts: 4,906
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #135 on: March 10, 2010, 11:54:13 PM »
Thanks for the original post Tim.

I'm not quite sure why people are wasting time trying to convince a couple people with irrational fears about meds to overcome them, stop being so self indulgent. Let them be, I say. They'll learn soon enough.
There are plenty of people on the planet who would be envious to be in their position, to say, nah, I'll go against all common sense and scientific evidence and not take the life saving medication that I have access to, cause I'm worried I might get the squirts or something.
Suck it up you wusses and stop wasting everyone's time.

Are you talking about all HIVers who aren't on meds or the ones with CD4s dropping into dangerous levels and still scared/refuse to take them?  I'm still don't think that question has been answered--whether everyone is arguing for immediate HAART intiation and disagrees with the current guidelines.

Offline buffaloboy

  • Member
  • Posts: 159
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #136 on: March 11, 2010, 03:08:12 AM »
''and yet........  you still question my voracity''

Except I'm not.  Not at all.  In fact, I've stated a couple of times that I thought your opening post was worthwhile and that there may be some people who find it helpful.  And as much as I do believe that to be the case, it's not an approach which will necessarily be effective for everyone that you wish to target.


Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #137 on: March 11, 2010, 04:09:18 AM »
Bravo Moffie!
Positive since 1985

Offline griezzel

  • Member
  • Posts: 46
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #138 on: March 11, 2010, 04:19:46 AM »
I'm not quite sure why people are wasting time trying to convince a couple people with irrational fears about meds to overcome them, stop being so self indulgent. Let them be, I say. They'll learn soon enough.
There are plenty of people on the planet who would be envious to be in their position, to say, nah, I'll go against all common sense and scientific evidence and not take the life saving medication that I have access to, cause I'm worried I might get the squirts or something.
Suck it up you wusses and stop wasting everyone's time.

Ok, now it's my turn...

::face-palm::

HOW are people NOT getting the simple point being made? It sems that a misunderstanding popped up early in the thread and people keep perpetuating it. Sad.
« Last Edit: March 11, 2010, 04:22:34 AM by griezzel »

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #139 on: March 11, 2010, 07:40:26 AM »
Ok, now it's my turn...

::face-palm::

HOW are people NOT getting the simple point being made? It sems that a misunderstanding popped up early in the thread and people keep perpetuating it. Sad.

I see you're having the same issue I am having with the whole *facepalm* procedure.  Like you, I made the mistake of making it two words.  If you check the other instances where this useful tool was used it is always done so as one word.   I think the moderators are considering making this a feature you can use much like the quote button, not sure though...
I despise the song Love is in the Air, you should too.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #140 on: March 11, 2010, 10:03:50 AM »
Quote Ted:
Quote

Are you talking about all HIVers who aren't on meds or the ones with CD4s dropping into dangerous levels and still scared/refuse to take them?  I'm still don't think that question has been answered--whether everyone is arguing for immediate HAART intiation and disagrees with the current guidelines.


Ted, nobody is saying that treatment must be initiated immediately upon diagnosis and neither is anyone disputing the latest treatment guidelines.

However, there are some members here whose numbers have dipped far below the cut-off for treatment and they are wary of starting treatment - for whatever reason - and the reasons seem to be as individual as the posters.

I've been poz since '97 and I'm still not on meds. My numbers are fine, though (they're available for scrutiny in my profile). I'm not afraid of starting meds and I will when I need to start.

If you look at my numbers from late '07 through spring '09, some would say that under the newest guidelines, I should have started. However, since summer '09 my CD4 has been back over 500. So go figure. Maybe next time they dip and stay under 500 I'll start, but maybe not. It will depend on how low they go and how I feel physically. If they go and stay under 300, then I WILL start.

If I have any reservations about starting meds, it's because of adherence issues and not side effect issues. I'm just crap at taking meds in a regimented fashion. It's a wonder I didn't regularly end up pregnant back in the days when I was on the Pill. That's just how I am and at least I recognise my weaknesses.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #141 on: March 11, 2010, 10:38:35 AM »

If you look at my numbers from late '07 through spring '09, some would say that under the newest guidelines, I should have started. However, since summer '09 my CD4 has been back over 500. So go figure. Maybe next time they dip and stay under 500 I'll start, but maybe not. It will depend on how low they go and how I feel physically. If they go and stay under 300, then I WILL start.


Initially I had over 600 CD4s and they dropped to about 330 in three weeks time and after that they went back up to about 450. During that time I was confused about how to read the guidelines. Did they mean one should start when hitting the target number (at the time that number was <350) or if the numbers bounced back above the target (>350) were you OK and didn't have to start?

I asked Dr. Gallant about this, although I can't locate the Q&A at the moment, and he said the way to read the guidelines was that unless it is a very recent infection, once you hit the target number you are supposed to start, even if the CD4s then bounce back up.  Apparently it's an indication of more severe immune damage when you hit a nadir of <350 and leave it untreated.

I'm not saying you should start or not start, Ann, I know that you're very well-informed and responsible, but just wanted to share that.

You're body will certainly give you indications such as bad fatigue and maybe skin issues and fat loss in areas that you actually want fat, etc etc. I guess you're not experiencing any health or quality of life issues?
« Last Edit: March 11, 2010, 10:42:51 AM by Inchlingblue »

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #142 on: March 11, 2010, 10:53:50 AM »
Hi Inch. Regardless of what Dr Gallant says, my doctor is a firm believer in looking for well-defined trends, not just one isolated result. And with all the ups and downs my numbers have had over the years, I agree with him.

My doctor is also a well-respected hiv pharmacologist and researcher and I trust what he says about the meds. There's one in the pipeline that he is hoping I can hold out for. He knows about my adherence issues and wants me on a once-a-day schedule, as do I.

He knows I won't take Sustiva, he doesn't think Reyataz would be a good fit for me (because of Norvir), and doesn't trust once-daily Isentress. The med he's hoping I can wait for is elvitegravir boosted with cobicistat, which is another new med in the pipeline. He's very happy with the trial results of this combo so far.

I trust his judgement on the meds. I don't call him the Wizard of Poz for nothing! ;)

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #143 on: March 11, 2010, 11:12:47 AM »
Inch, you edited your post to add the following while I was typing:

Quote

You're body will certainly give you indications such as bad fatigue and maybe skin issues and fat loss in areas that you actually want fat, etc etc. I guess you're not experiencing any health or quality of life issues?


I've had hiv-related diarrhea issues for years, but it's under control with non-ART meds. My diarrhea issues are why he is reluctant to put me on a combo that includes Norvir. He has other long-term slow-progressors who have the diarrhea issues and he said none of them ever really had this resolve completely upon initiation of ART, especially if their combo included Norvir.

I sometimes experience more fatigue than I would consider normal, but it's not what I would call a quality of life issue. My skin is fine ever since I got rid of the hep C. The only fat issue I have is having too much; you should see my gut. ;D

I sometimes have joint pain, but the further I get away from my hep C treatment, the less this happens. My doc says this is something else he's seen in LTSP. In my case it seems to have been more related to hep C (joint pain is common with hep C). For a while I used to have to use a walking stick to get around but touch wood, I haven't had to use it in over two years.

We had a very intense, in-depth discussion back in November about the issue of starting meds - I wanted his opinion in light of the new guidelines. That's when we went over the available combos. He made a very strong case for waiting for the new meds I mentioned above and as I've said, I trust the man. He also said that if I did start having issues that I felt were affecting my quality of life, I was free to opt for treatment.

Back when I was very newly diagnosed, I practically begged him to put me on meds. I wanted to feel like I was doing something. He patiently explained to me the pros and cons and in my case, the cons outweighed the pros. I'm so glad I listened to him. I've had many med free years that I wouldn't have had otherwise and it has done me no harm.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline griezzel

  • Member
  • Posts: 46
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #144 on: March 11, 2010, 01:22:28 PM »
If I have any reservations about starting meds, it's because of adherence issues and not side effect issues. I'm just crap at taking meds in a regimented fashion. It's a wonder I didn't regularly end up pregnant back in the days when I was on the Pill. That's just how I am and at least I recognise my weaknesses.

Ha! I'm terrible, too, at adhering to schedules. I'm currently shopping for a cheap "medication reminder" clock, one that allows you to set a number of alarm times. They all seem to have some slight variances in the way they function. I guess I ought to start a thread on the subject.

Offline skeebo1969

  • Member
  • Posts: 5,705
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #145 on: March 11, 2010, 01:31:30 PM »
Ha! I'm terrible, too, at adhering to schedules. I'm currently shopping for a cheap "medication reminder" clock, one that allows you to set a number of alarm times. They all seem to have some slight variances in the way they function. I guess I ought to start a thread on the subject.

  I use my cell phone's alarm.  Have 3 seperate times programmed in and it works great.
I despise the song Love is in the Air, you should too.

Offline blackwingbear

  • Member
  • Posts: 363
  • Hello, all you happy people....
    • THE DARK MIND OF BLACKWINGBEAR
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #146 on: March 11, 2010, 01:38:03 PM »
Ha! I'm terrible, too, at adhering to schedules. I'm currently shopping for a cheap "medication reminder" clock, one that allows you to set a number of alarm times. They all seem to have some slight variances in the way they function. I guess I ought to start a thread on the subject.

I think many of them have this rhetoric so drilled into their mind that if any problem is brought up (forgetfulness, supplemental nutrition, dealing with side-effects) they see it as a direct attack upon what they "know" and automatically assume that you are knocking these medicines - when actually you might not mean to, you simply looking for more advice than what is being spouted. Kind of a matter of they aren't actually "hearing" (seems a funny term for text-based) what you are saying but merely seeing it as an attack on these meds (which I believe we all agree save lives) - Like a witch-hunt for denialists carried to the extreme.
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Online Miss Philicia

  • Member
  • Posts: 24,142
  • celebrity poster, faker & poser
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #147 on: March 11, 2010, 01:40:09 PM »
Insanity is never pretty.
"Iíve slept with enough men to know that Iím not gay"

Offline blackwingbear

  • Member
  • Posts: 363
  • Hello, all you happy people....
    • THE DARK MIND OF BLACKWINGBEAR
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #148 on: March 11, 2010, 01:42:53 PM »
Insanity is never pretty.

Sorry to hear you're having issues and hope it gets better for you.
It's all a sham. Politics is a big game, same as the media - and same as religion. The point is to distract & control. If we're looking at what they tell us is the "big issue", we're not looking at what they are doing. In time, there will be different causes and different minorities to pick-on. All in the name of keeping the system going, and the people distracted.

Offline griezzel

  • Member
  • Posts: 46
Re: For those of you who might be questioning HAART, or maybe when to start.
« Reply #149 on: March 11, 2010, 01:44:04 PM »
Insanity is never pretty.
lol! i LOVE self-deprecating humour!

 :-*

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.