Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
November 21, 2014, 11:49:08 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 646770
  • Total Topics: 49271
  • Online Today: 179
  • 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: Bad Medicine  (Read 4772 times)

0 Members and 1 Guest are viewing this topic.

Offline artscafe

  • Member
  • Posts: 7
Bad Medicine
« on: July 08, 2009, 05:57:37 PM »
Bad Medicine

'Treatments' and 'Therapies' are massively profitable - for the entire medical industry, and most especially, the pharmaceutical corporations.

There is BIG money in sickness & disease, and as long as we allow PROFIT & GREED to trump human health & quality of life, then we will never see an actual CURE for HIV - nor any other major disease/illness, for that matter - but i can guarantee you, we're gonna see lots more treatment and therapy regimens 'in the pipeline'.  Not necessarily to improve quality of life for those of us who are ill (and certainly not cures), but instead, to keep this corrupt & broken medical system propped-up and profitable.

So please pardon my naked cynicism, but there is simply too much $$$ at stake - to just throw it all away on developing cures.  It ain't gonna happen... at least, not in my lifetime, or any of yours.

Ask yourselves... when was the last time we had a major medical breakthrough - i mean, an actual CURE for ANY major illness/disease??

And while you mull that over... I'll go take my PILLS (Truvada, Reyataz, Norvir) - the same meds that have impaired my cognitive abilities (persistent brain fog), messed-up my perfect 20/20 eyesight (i now have light sensitivity and blurred vision), sucked the life out of my face and relocated it to my abdomen, as FAT, leaving me looking gaunt in the face, like death warmed over (lypo-whatever-the-fuk it's called).  or how about the constant stomach upset, GI discomfort, alternating diarrhea/constipation, restless leg syndrome, muscle twitching, bizarre skin eruptions, testicular atrophy, crushing fatigue (about an hour after dosing)... yadayadayada.   and all that crap is just for starters... who knows what serious damage is being done to my liver, kidneys and other vital organs by this toxic cocktail of ARVs.  and just yesterday, my doctor told me that my skin/eyes are jaundiced (yellowish hue), which can be a 'minor' side-effect of Atazanavir (Reyataz).   and btw, i experienced NONE - not one - of these horrible symptoms/side-effects BEFORE i started taking the ARVs.  had i known then, what i do now, i would not have made the choice to begin HAART.  yeah ok, at least i'm alive... sort of.  but quality of life... forget it.  and in the future, assuming i'm still around, i'll likely have heart & liver problems to look forward to, due to the potential damage caused by these toxic ARVs.  great!  life couldn't be better!

and get this, i have only been on these g'damn meds for 9 months, but already my body is being ravaged by them, right from day 1 in fact.  the first few months of HAART were pure HELL.  my face and torso broke out in the worst case of acne that i have ever seen, my face/body became oily and itchy as hell - and i've never had acne before in my life (even as a kid, no acne) - my skin used to be perfect, no blemishes, no acne, nothing... that is, until i began the HAART regimen.  so yeah, thanks a lot Gilead, Bristol-Myers Squibb, Abbot Labs, et al... we PHAs are alive, yet still *suffering*... while you people make a bloody $killing$ off of us.  but hey, that's ruthless capitalism for ya... money above all else, right?  and this treatment as prevention paradigm... what a pathetically cruel joke that is.

oh yeah, and did i mention... i'm pissed-off!

sincerely / andy

ps - no doubt, the moderators of this forum will probably delete/censor my post for being honest about what i'm going through... but everything i've written here is the TRUTH... these are MY experiences with HAART.  and i'm not happy about it.

pps - for those reading this, who are presently HIV negative - STAY THAT WAY!  b/c you definitely do NOT want to be on these medications, if you can prevent it.

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Bad Medicine
« Reply #1 on: July 08, 2009, 06:15:19 PM »

ps - no doubt, the moderators of this forum will probably delete/censor my post for being honest about what i'm going through... but everything i've written here is the TRUTH... these are MY experiences with HAART.  and i'm not happy about it.


What, and give you another reason to feel sorry for yourself? Not on your nelly! If you read the Welcome Thread before posting, you'd know we're not in the habit of censoring people's posts.

But welcome to the forums. Sorry to hear you're having such a difficult time.


Ask yourselves... when was the last time we had a major medical breakthrough - i mean, an actual CURE for ANY major illness/disease??


I can think of one right off the bat - Hep C. I did the treatment for a year - a treatment that makes current front-line hiv meds look like a walk in the park on a sweet, sunny day. And I'm now cured of hep C. It's a pretty new treatment, less than ten years old. Not everyone is as lucky as I was to be cured, but many people do end up with a successful outcome.

Hiv is another story - it constantly mutates and outwits the scientist. I'm just glad the treatments have improved as much as they have - if you were on the meds from the early days, you'd have a lot more to complain about. I'm glad we've got meds to keep us alive. The side-effects today are nothing compared to the horrible, painful death from aids.

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 artscafe

  • Member
  • Posts: 7
Re: Bad Medicine
« Reply #2 on: July 08, 2009, 07:27:37 PM »
What, and give you another reason to feel sorry for yourself? Not on your nelly! If you read the Welcome Thread before posting, you'd know we're not in the habit of censoring people's posts.

But welcome to the forums. Sorry to hear you're having such a difficult time.

I can think of one right off the bat - Hep C. I did the treatment for a year - a treatment that makes current front-line hiv meds look like a walk in the park on a sweet, sunny day. And I'm now cured of hep C. It's a pretty new treatment, less than ten years old. Not everyone is as lucky as I was to be cured, but many people do end up with a successful outcome.

Hiv is another story - it constantly mutates and outwits the scientist. I'm just glad the treatments have improved as much as they have - if you were on the meds from the early days, you'd have a lot more to complain about. I'm glad we've got meds to keep us alive. The side-effects today are nothing compared to the horrible, painful death from aids.

Ann


hey ann,

i have no interest in a pity party, that's a waste of time, and wasn't the intention of my post... i'm only here to share my experiences and gather facts and solutions.

good to hear that you've conquered hep c... but how do you know that you are 'cured' of it?  from what i've read, it's practically impossible to cure, even after a liver transplant, etc... it usually comes back.  admittedly, my knowledge of these things is rather limited.  i hope you are cured, nevertheless.

you know, i don't understand how it is that we can spend trillions of dollars on R&D into high-tech weaponry, space programs, information technology, and what have you... yet, medical science can't even come close to protecting us from pathogens and disease - compared to what our immune systems do for us.

if you ask me, we're still living in the dark ages, when it comes to medical science.  now, if we could convince some of those great scientific minds to put their ability & talents to work in medicine - instead of developing laser-guided bombs and other weapons of war - we might actually make some medical breakthroughs.

wishful thinking, i know.

thanks for taking a moment to follow-up, btw... even though you were a bit snarky about it.  but that's ok, i don't give a shit anymore.

cheers / andy

Offline mecch

  • Member
  • Posts: 12,034
  • red pill? or blue pill?
Re: Bad Medicine
« Reply #3 on: July 08, 2009, 07:50:15 PM »
Sorry man, I read your post as a screed.  
I think you are self-involved and irresponsible.
First of all, if you have ALL those horrible HAART side effects, you could at least share your history with HIV.  
How long infected?
If you only started 9 months ago, and you are on the combo you list, your list of side effects is truly truly extraordinally bad.

Constant Brain fog. Blurred vision. Major lipoatrophy and lipodsytrophy. -- in 9 months on Reyataz????  Honey, something sounds rotten in Denmark. 

or how about the constant stomach upset, GI discomfort, alternating diarrhea/constipation, restless leg syndrome, muscle twitching, bizarre skin eruptions, testicular atrophy, crushing fatigue (about an hour after dosing)... yadayadayada.


Ball shrinkage??? this is a new one.

I'm personally not believing this. 

But If it is really true, get yourself a new specialist!!!!!

I guess you have a right to your rotten life but KNOW that a lot of HIV+ people on HAART do not share your side effect nightmare experience.

Second, use the search engine and find the MANY threads about conspiracy theories - e.g. big pharma will not cure HIV because it would cut the gravy train -- and KNOW that your theory is hardly original and we tend to want more intelligent and informed depate on such questions.

Not this, your SCREED.
« Last Edit: July 08, 2009, 07:55:46 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Bad Medicine
« Reply #4 on: July 08, 2009, 07:51:01 PM »
Hi Andy,

When a person's hep C viral load has been undetectable for at least two years, it's considered a cure. Mine has been undetectable for seven years now. Yay! ;)

Have you discussed what you believe to be side-effects with your doctor? The combo you're on isn't known for lipo issues - in fact it's one of the friendlier ones all-round. Aside from the yellowing, I've never heard it to be associated with any of the problems you're reporting. (except the nausea and other GI issues could be the Norvir, although it doesn't usually do that at the low dose you're taking) Your eye issues could just be aging or any number of other things. Have you been to an eye doctor? You might just need glasses - nothing to do with the meds.

Even if some of the problems do turn out to be from the meds, there are other meds you can try. Some of the newest ones seem to be pretty much side-effect free. This is something you really should discuss with your doctor. Don't suffer in silence, speak up, and not just here. We can commiserate, but we can't change your combo for you.

Good luck getting things sorted out.

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 artscafe

  • Member
  • Posts: 7
Re: Bad Medicine
« Reply #5 on: July 08, 2009, 08:20:34 PM »
Sorry man, I read your post as a screed.  
I think you are self-involved and irresponsible.
First of all, if you have ALL those horrible HAART side effects, you could at least share your history with HIV.  
How long infected?
If you only started 9 months ago, and you are on the combo you list, your list of side effects is truly truly extraordinally bad.

Constant Brain fog. Blurred vision. Major lipoatrophy and lipodsytrophy. -- in 9 months on Reyataz????  Honey, something sounds rotten in Denmark. 

or how about the constant stomach upset, GI discomfort, alternating diarrhea/constipation, restless leg syndrome, muscle twitching, bizarre skin eruptions, testicular atrophy, crushing fatigue (about an hour after dosing)... yadayadayada.


Ball shrinkage??? this is a new one.

I'm personally not believing this. 

But If it is really true, get yourself a new specialist!!!!!

I guess you have a right to your rotten life but KNOW that a lot of HIV+ people on HAART do not share your side effect nightmare experience.

Second, use the search engine and find the MANY threads about conspiracy theories - e.g. big pharma will not cure HIV because it would cut the gravy train -- and KNOW that your theory is hardly original and we tend to want more intelligent and informed depate on such questions.

Not this, your SCREED.

hey 'honey', i don't give a rat's ass what you 'believe' - this is MY story - and it is FACT.  HIV and HAART effect everyone DIFFERENTLY, so just because your life is fabulous and wonderful on these meds, does not mean that everyone else's is gonna be the same.

... and i got nothing more to say to you, jerk

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Bad Medicine
« Reply #6 on: July 08, 2009, 08:28:49 PM »

... and i got nothing more to say to you, jerk


Andy, if you read the Welcome thread I directed you to in an earlier post, you will hopefully have read the posting guidelines. While we don't censor people's posts, we DO expect people to not name-call.

I understand that Mecch's tone was rather condescending, but he didn't resort to name-calling. I hope you won't anymore either, at least not on these forums.

You can disagree with someone all you like, and post your opinion all you like, but no name-calling, ok? Make sure you read the posting guidelines so you don't end up being given a time out. Thank you for your cooperation.

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

Online Miss Philicia

  • Member
  • Posts: 24,414
  • celebrity poster, faker & poser
Re: Bad Medicine
« Reply #7 on: July 08, 2009, 08:28:55 PM »
If you have "major lipo" from this combo you really need to get yourself into a text book or something, because that is an extraordinary claim.  And exactly what is your HIV specialist saying about all of your complaints after 9 months?
"I’ve slept with enough men to know that I’m not gay"

Offline artscafe

  • Member
  • Posts: 7
Re: Bad Medicine
« Reply #8 on: July 08, 2009, 08:41:22 PM »
Hi Andy,

When a person's hep C viral load has been undetectable for at least two years, it's considered a cure. Mine has been undetectable for seven years now. Yay! ;)

congratulations

Quote
Have you discussed what you believe to be side-effects with your doctor?

yes, i have... at the ID (infectious disease) clinic.  they don't seem too concerned, and as you say, i'm supposedly on one of the more 'friendly' combos, so there isn't much else they can do for me.  the other choices (sustiva, etc) are apparently even worse than what i'm now taking.  thing is, i'm a small guy, so i'm thinking that the (standard) dose might be too HIGH for my body weight, and that's why i'm experiencing some of these undesirable side-effects.  the lypo thing really surprised me, i wasn't expecting that (so soon), and of course, yellow eyes/skin is also a dead giveaway that something isn't right.  i went for bloodwork yesterday, to have my liver enzymes checked.

the 'eye issues', as you put it, are brand new... and began within DAYS of starting the meds and then became progressively worse.  in fact, it was really disconcerting at first, because i could actually SEE objects coming in/out of focus, as i shifted my gaze from one location to another.  in other words, my ability to focus on objects was DELAYED considerably, to the point where i could see it happening.  i also had problems with coordination.  for example, i would go to reach for a something, say a glass or bowl in the cupboard... BUT my hand would actually grab something else instead.  it was bizarre, but that problem eventually went away.  anyway, my vision is still blurred, especially on objects that are NEAR, i just can't focus on anything that's in front of my face.  i had to go out and buy reading glasses, just so i could read the computer screen again.  i repeat - my eyes were perfect before i started the meds, no joke.

also, in the beginning, the first week of HAART, i actually had a sensation of elation, like i had taken a massive dose of anti-depressants or something.  it 'perked' me up, made me exciteable... to the point where i couldn't sleep, except for an hour or so, but not a deep/restful sleep.  fortunately, that also went away... but my 'thinking' (cognitive function) has slowed-down considerably, which really sucks.

Quote
Even if some of the problems do turn out to be from the meds, there are other meds you can try. Some of the newest ones seem to be pretty much side-effect free. This is something you really should discuss with your doctor. Don't suffer in silence, speak up, and not just here. We can commiserate, but we can't change your combo for you.

Good luck getting things sorted out.

thank you... i appreciate it

andy

Offline artscafe

  • Member
  • Posts: 7
Re: Bad Medicine
« Reply #9 on: July 08, 2009, 09:05:55 PM »
If you have "major lipo" from this combo you really need to get yourself into a text book or something, because that is an extraordinary claim.

'text book'??  look, i'm not making any outrageous 'claims' here.  lypo IS a KNOWN side-effect of ARVs, even the ones i am on... except, it's not supposed to be as pronounced or happening this soon.

Quote
And exactly what is your HIV specialist saying about all of your complaints after 9 months?

what exactly do you expect them to say?  they send me home with meds... that's it.  what more can they do??  they basically follow the protocols set out by the pharmaceutical companies.

Offline Robert

  • Member
  • Posts: 2,648
Re: Bad Medicine
« Reply #10 on: July 08, 2009, 11:21:39 PM »

if you've only been on this 9 months, then quit. You wouldn't be the first.  (A good friend of mine quit after less than a year on meds.  It's been 5 years and he's doing great.) Tell the Dr. you've had enough.

You say you're small.  Then cut back.  Our friend Sean, The Blogger takes his meds every other week.  One week on.  One week off.  He's been doing this for a good 3-4 years and seems to be doing fine, t-cell and VL wise (and I think he's on the same regimen.)

Or if you don't want to quit then try something different.

Don't make it sound like you don't have any options.  You can do whatever you want.

robt
..........

Offline artscafe

  • Member
  • Posts: 7
Re: Bad Medicine
« Reply #11 on: July 09, 2009, 12:15:50 AM »
if you've only been on this 9 months, then quit. You wouldn't be the first.  (A good friend of mine quit after less than a year on meds.  It's been 5 years and he's doing great.) Tell the Dr. you've had enough.

You say you're small.  Then cut back.  Our friend Sean, The Blogger takes his meds every other week.  One week on.  One week off.  He's been doing this for a good 3-4 years and seems to be doing fine, t-cell and VL wise (and I think he's on the same regimen.)

Or if you don't want to quit then try something different.

Don't make it sound like you don't have any options.  You can do whatever you want.

robt

now you see, THIS is why i am here.  i had NO idea that it was possible to do what you are suggesting.  in fact, i was explicitly told - repeatedly reinforced - by the doctors, nurses and the pharmacist at the ID clinic that it was *imperative* i take the meds "EVERY DAY" - without fail - otherwise, the medications would stop working - because, as it was explained to me, the virus will be given a chance to mutate/adapt itself to the particular class of ARVs that i'm taking - IF drug serum levels were not maintained at a proper level in my body.  the clinic staff were VERY insistent about this, which is one of the reasons it took me about about a year to finally make my decision about starting the meds.

but here you are telling me that it is/might be possible to change the dosing schedule to suit my own body - and without any ill effects??

sigh... so wtf don't my doctors know anything about this?  i have an HIV specialist (who i don't like, actually, but he's the ONLY choice i have) and a family physician (who i do like), but neither one of them said anything about modifying the dosing schedule to suit my own needs.  they explicitly forbade it.

anyway, THANK YOU, robert, for the helpful advice... although i'm not exactly sure how i should proceed at this point.  i'm AFRAID to stop taking the drugs, even for a day, in case i end up doing more harm than good.

i'll run this by my family doctor and see what she says.

i should probably also seek some advice from Sean, the blogger.  i'll check his blog, thanks for the link.

cheers / andy

Online Miss Philicia

  • Member
  • Posts: 24,414
  • celebrity poster, faker & poser
Re: Bad Medicine
« Reply #12 on: July 09, 2009, 01:26:14 AM »
Cherry picking two examples that when thousands of examples showing the reverse to be true isn't what I'd really call sound advice.  But Robert is correct that you can do what you want -- nobody stands there and forces the pills down your throat.  But if you get resistance issues from doing this you will only be able to blame yourself.  And maybe Robert :)

Similarly I could pluck out more examples from people I've known that did this and didn't live to try something else, but I've also known a person that is similar to the experience Robert has related.  Put it this way, if it's a 20-1 chance of it not working out well what do you want to do, and why would you make this decision without considering changing your current med regimen?
« Last Edit: July 09, 2009, 01:32:49 AM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline Robert

  • Member
  • Posts: 2,648
Re: Bad Medicine
« Reply #13 on: July 09, 2009, 02:10:26 AM »
hi andy

i gotta say none of what I suggested is recommended by any docs that I know of.  Personally, I am on the same regime as you and I am NOT 100% compliant.  More like 90% (I deliberately avoid my meds anywhere from 3-4 times/month) and my Dr. is not happy with it.  What's she going to do?  Fire me?  Like I said, it's my choice.  And like you said,  who knows what the long-term effects are.  That's why I'm not too keen on the meds.

I think though, you're putting too much faith in the medical profession.  The Dr and the pharmacist and the nurse certainly have learned opinions backed by valid science, but hey, the medical profession, and certainly that dealing with  HIV/AIDS is as much an art as it is a science.  (and besides, professional types tend to hang around with each other and  then they just end up re-enforcing what each other think. That's why you get just alarmist opinions from them.  If you ask me, Dr's need to get out more)

Work with your Dr.  Tell him what your thoughts are.  Tell him he needs to listen to you so the 2 of you can work this through.  Whatever you do, don't let him scare you into doing something you don't want to do.  After all, what's he going to do?  Fire you?  

robert
« Last Edit: July 09, 2009, 02:17:46 AM by Robert »
..........

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Bad Medicine
« Reply #14 on: July 09, 2009, 02:40:56 AM »
I was curious about Sean's approach and came across one of his entries wherein he says:

my latest HIV lab results. The viral load is undetectable, and the CD4 (t-cell) count is 523... the third highest I've had recorded since the 1980's!

Sweet!

For those who know about my week on/week off treatment strategy, it's important to note that the labs were drawn after being two days into a week on the drugs.

Huh?

I take my HIV meds for seven days, then don't take them for seven days and repeat that cycle. In the March issue of Poz- out next month- there will be a column about why and how I came to the decision to do this back in 2002. I'll link it when it's up
.

So I guess the March 2009 issue of POZ has more info.

artscafe: You mention that you are on the small side, body-wise, can you give an idea? This could be a legitimate concern, I guess it would take too many studies to be able to "customize" dosing for size but it's something worth looking into ("Big Pharma, can you hear me?")

There was a small non randomized study that looked at Isentress and Reyataz as a 2-drug cocktail and it actually worked for some people. If this turns out to have legs and can suppress virus well, it would be an excellent option for many as far as reducing toxicities etc.

One important piece of advice, for whatever it's worth: research thoroughly before attempting any "unorthodox" dosing and if you do attempt it, make sure you are already undetectable, preferably don't even try it until you have been UD for about 6 months. I think this would help your chances of succeeding.

Please keep us posted and one quick question if you don't mind: what were your numbers when you started the meds?

LINK TO ARTICLE IN POZ:

http://www.poz.com/articles/shawn_decker_hiv_2303_16089.shtml
« Last Edit: July 09, 2009, 03:02:16 AM by Inchlingblue »

Offline mecch

  • Member
  • Posts: 12,034
  • red pill? or blue pill?
Re: Bad Medicine
« Reply #15 on: July 09, 2009, 09:20:39 AM »
I apologize for coming on so strong I didnt mean to be a jerk.
Your list of side effects is violent.  I guess it made me afraid.  

This forum works in two ways -
1) members communicate with each other.
2) public reads our communication.

Your list of side effects is so unusual, I was asking you to please provide more information because we are all in this together and yes, if you really have all this, in 9 months, than something is drastically wrong with the medical attention you are getting.  Balls shrinking?  Face wasting? Brain Fog?

It seems to me that you have seen a list of all possible side effects of HAART from the last 10 years of very mixed experiences of people on HAART, and you have quite a few of them, in 9 months.  

Were you quite il before you went on HAART?  

What are your numbers.

If you want to dump all this on members of this forum, you need to respect us enough to fill us in politely on the details.

This forum is filled with people who went far too long without HAART and regret having been so afraid, once they start HAART and start recovering their equilibrium.

Messages like yours, totally negative, are valuable addition but please, with real information.  Its not fair to talk about all those side effects, so fast, with no medical opinion expressed on ANY of them.  You describe symptoms but no medical opinion.  

You only add to the fear of HAART.  

Where is the medical opinon about what is a happening to you??

And yes, noboday wants to be on these drugs, and everyone should try to stay HIV-.  

« Last Edit: July 09, 2009, 11:10:15 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

  • Member
  • Posts: 12,034
  • red pill? or blue pill?
Re: Bad Medicine
« Reply #16 on: July 09, 2009, 09:52:00 AM »
http://www.medscape.com/viewarticle/462711

One week on, One week off, was clinically tested and proved a failure, the results published in 2003, so the research probably before that, and on combos now no longer much used.  But still....  beware

It worked for some, not all
« Last Edit: July 09, 2009, 10:02:16 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Luke

  • Member
  • Posts: 291
Re: Bad Medicine
« Reply #17 on: July 09, 2009, 10:13:43 AM »
I really don't mean any offence here - and I don't even know how old you are - but have you actually  considered the natural effects of ageing?

Half the things you list here are what starts to happen quite naturally as you reach a certain time of life and, miraculous as anti-HIV drugs undoubtedly are, they aren't anti-gravity devices, they wont stop changes to your eyesight, they wont stop changes to your face, they wont stop your testicles shrinking as your testosterone production falls, they wont stop the midriff expansion if that is what your genes, diet and exercise routine conspire to dictate and they wont stop all manner of other perfectly normal changes to your hormone balance occurring.

Whilst I have no doubt that you probably are experiencing side-effects of treatment, is everything that you are experiencing such a side-effect? I just think it may be worth considering that you may have several unrelated things going on here - and that blaming them all on drugs is the easier option.
« Last Edit: July 09, 2009, 10:15:50 AM by Luke »

Offline Luke

  • Member
  • Posts: 291
Re: Bad Medicine
« Reply #18 on: July 09, 2009, 10:25:07 AM »
Also, if you really insist on cutting down on the number of drugs you are taking, can I suggest that you discuss a FOTO regimen (five days on/two days off - so effectively you get the weekend off) with your doctor. I wouldn't personally advocate it; but there is some recent (but very limited) study evidence of it working for certain combinations, it cuts your intake of drugs by 29% and I would have thought that it has to be hell of a lot safer than Sean's method of medicating (which I wouldn't touch with the proverbial bargepole).

Treatment breaks set for a come-back?:  http://www.aidsmap.com/en/news/A1D38A0B-56E7-41F4-9CDE-A95A53DDA0A3.asp  (Aidsmap: November 12, 2008)

The FOTO study: 24-week results support the safety of a 2-day break on efavirenz-based antiretroviral therapy:  http://www.jiasociety.org/content/11/S1/O19  (JIAS: 9–13 November, 2008)

Treatment Interruptions May Still Have a Future:
 http://www.poz.com/articles/hiv_treatment_interruption_761_15621.shtml  (POZ: 13 November, 2008)
« Last Edit: July 09, 2009, 10:43:39 AM by Luke »

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Bad Medicine
« Reply #19 on: July 09, 2009, 01:15:49 PM »
Just to clear up the terms so it's not confusing:

Structured Intermittent Therapy (SIT)

and

Structured (or Strategic)Treatment Interruption (STI)

SIT is a form of reduced treatment or "cycling" such as the 7 days on 7 days off or the 5 days on 2 days off

STI is stopping altogether for an extended time while being monitored

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Bad Medicine
« Reply #20 on: July 09, 2009, 01:23:31 PM »
Half the things you list here are what starts to happen quite naturally as you reach a certain time of life and, miraculous as anti-HIV drugs undoubtedly are, they aren't anti-gravity devices, they wont stop changes to your eyesight, they wont stop changes to your face, they wont stop your testicles shrinking as your testosterone production falls, they wont stop the midriff expansion if that is what your genes, diet and exercise routine conspire to dictate and they wont stop all manner of other perfectly normal changes to your hormone balance occurring.

Not to answer for the OP but when reading his descriptions of the ailments what stands out is that he is saying they came about very soon after starting meds and progressed quickly. Natural aging happens more gradually. HIV itself has been shown to speed up the aging process so this could be part of it.

Offline Luke

  • Member
  • Posts: 291
Re: Bad Medicine
« Reply #21 on: July 09, 2009, 01:34:26 PM »
Not to answer for the OP but when reading his descriptions of the ailments what stands out is that he is saying they came about very soon after starting meds and progressed quickly. Natural aging happens more gradually. HIV itself has been shown to speed up the aging process so this could be part of it.

True, but that still doesn't preclude ageing. If something happens which puts the body under strain - such as starting meds - it just makes the natural process more obvious. It is like astigmatism. Most people with astigmatism can see perfectly well most of the time, but when they are under strain, or get tired, focussing becomes a problem. It is still the underlying problem that is at fault - not whatever puts them  under strain, or makes them tired.

Offline artscafe

  • Member
  • Posts: 7
Re: Bad Medicine
« Reply #22 on: July 09, 2009, 02:47:48 PM »
hey everyone, thank you for following-up with all your helpful advice... i'll read/digest some of the online references you've provided, and after i've discussed this stuff with my docter (next week, i hope, after i get the results of my bloodwork), i'll report back here ok.

i apologize for my abrasive demeanour... i'm a bit cranky these days.

i'll be back soon...

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Bad Medicine
« Reply #23 on: July 09, 2009, 05:29:14 PM »
Andy

One other idea to consider -- instead of skipping doses perhaps (as a small guy) you need something closer to a pediatric dose. 

There's a technique called therapeutic drug monitoring, where the  doctor looks at the concentration  of the drug in your bloodstream.  Based on how much drug you are getting he can adjust the dose.

There are a number of articles on it -- here's a report of a study that came out in the last year or so.
http://www.aidsmeds.com/articles/hiv_tdm_protease_1667_16052.shtml

The whole idea of skipping doses hasn't worked out too well in studies, so this might be a better option.

Assurbanipal

P.S. oh, and welcome to the forums...

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline newt

  • Member
  • Posts: 3,886
  • the one and original newt
Re: Bad Medicine
« Reply #24 on: July 10, 2009, 05:39:11 PM »
Perhaps, according to the grey literature (ie adverse event reports), 6 in 100 will experience rapid fat redistribution on Reyataz + other metabolic effects. I wish docs would file the relevant reports ("Why not?" I have asked, to be told "Otherwise it's a really good drug..." ... hmmm).

Interestingly, raltegravir has no metabolic interactions cos it works outside the cell. But it's new, so the side effects ain't all apparent yet.

The solution is to change drugs. Kick your doc's arse.

- matt (on the same combo with no side effects, although the vision point is interesting to reflect on cos mine's deffo worse since combo) the newt

Now playing: BBC weather forecast
"The object is to be a well patient, not a good patient"

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Bad Medicine
« Reply #25 on: July 10, 2009, 05:42:03 PM »
Perhaps, according to the grey literature (ie adverse event reports),

Is this available online?

Re: Treatment interruptions or intermittent therapy, the jury is still out:



New Life for Treatment Interruptions?

July 10, 2009

by David Evans
Newly unearthed data from the SMART study may reawaken interest in the possibility of safely interrupting HIV treatment in at least some people.

Emerging data from a study that came to a grinding halt more than three years ago may reopen a door that most people assumed was firmly closed: the possibility of HIV treatment interruptions. The latest report has at least one activist questioning whether the death knell of treatment interruption research was sounded too soon.

The debate began with the premature January 2006 termination of a 6,000 person international clinical trial examining the benefits and safety of intermittent antiretroviral (ARV) therapy. That study, called the Strategies for Management of Anti-Retroviral Therapy (SMART) trial, hypothesized that people would fare better with periods off medications that have a long list of side effects. It halted enrollment and ended the treatment interruption arm early because a safety board monitoring the study found that people who interrupted their ARV treatment did significantly worse than people who stayed on continuous therapy. Specifically, people who stopped treatment when their CD4 cells climbed above 350 and then resumed it when their CD4 counts fell below 250 were more likely to develop a serious illness or die than people who stayed on treatment without interruption.

Continued...

LINK:

http://www.poz.com/articles/hiv_smart_interruptions_401_16900.shtml
« Last Edit: July 10, 2009, 07:24:00 PM by Inchlingblue »

 


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.