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Attitudes on HIV Drugs Revealed
      #43299 - 11/08/02 04:15 PM

Michael Carter

Lipodystrophy too high a price for two years of extra life, say patients

The majority of HIV-positive Californians would be prepared to have their life expectancy shortened by over two years if it meant avoiding the disfigurement of lipodystrophy, according to a study published in the American Journal of Medicine.

Investigators examined patient attitudes towards lipodystrophy by asking 75 people with HIV to complete a computer based questionnaire describing two people doing well on HAART.

One had developed the body shape changes associated with lipodystrophy. Investigators used photographs illustrating severe body shape changes taken from a study published in the New England Journal of Medicine.

Study participants were asked to assess the impact of HIV infection on their quality of life. On average, having HIV was assessed to have reduced quality of life by 26%, with study participants saying that having visible symptoms of lipodystrophy would mean that their quality of life was eroded by a further 20%.

When patients were given the choice between starting treatment with HAART and the development of disfiguring symptoms of lipodystrophy, two thirds of patients said that they would be prepared to give up one year of extra life to avoid developing the condition (mean 2.1 years), and on average, people in the study said that they were prepared to increase their risk of death by 13% to avoid lipodystrophy.

The authors conclude that “the results illustrate how optimisation of therapy for HIV therapy…requires giving a detailed understanding of how a patient values the specific risks to quality of life inherent in proposed treatments” adding, “it is possible that some patients will want to take risks to avoid the side effects of therapy, and that preference should be respected.”

Reference

Lenert LA et al. Adverse effects of medications and trade-offs between length of life and quality of life in human immunodeficiency virus infection. American Journal of Medicine: 113, 229-232, 2002




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Anonymous
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Re: Attitudes on HIV Drugs Revealed new
      #43302 - 11/08/02 04:57 PM

This is a tough one. Die of Aids or live indefinatly but have lipodystrophy. What a choice. Thank God they're making the meds. better now and with less side effects like this. Next year they're comming out with a drug specificlly to combat lipodystrophy. If it works it will be one more advancement to be thankful for. Sure beats death.



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Anonymous
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Re: Attitudes on HIV Drugs Revealed new
      #43303 - 11/08/02 05:02 PM

Could the people who post copyrighted materials give some introduction to why they are doing so? This board is to share experiences, ask for advice etc, not to try out theories or post articles that prove points. No one is pro treatment here. We are all however pro-life! We want to survive this epidemic and we know that right now treatment really helps even if it's still not at all ideal. I'm tired of these rude people just posting articles that they think we should read! Don't they think we know all this already!




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Re: Attitudes on HIV Drugs Revealed new
      #43304 - 11/08/02 05:20 PM

As a dissident I can say I don't think this article came from one of our supporters. I have no way of being sure but that would be my guess.

I cannot understand why you all hate hearing about the side effects of 'AIDS' medications. If I believed in AIDS I would want to know everything about possible medications.

Everyone on this board seems to want to hear nothing but how good the medications are and how bad the 'epidemic' is. Any good news about lower 'infection rates' is treated as heresy.

I know you will get angry if I say this but you act more like a religious fundamentalist group that a group of people suffering from a syndrome.

'AIDS' seems to be more an attitude to life (moral and social) than a syndrome based on the hypothesis that twenty nine existing conditions now can have a common cause.

Please let me have your unemotional (if possible) comments.

Best wishes to you all.



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Re: Attitudes on HIV Drugs Revealed new
      #43324 - 11/08/02 07:52 PM

This timely article actually produced a response in the thread revealing that a drug is being developed for lipo. Thus, this article-posting generated information that is positive and may not be known by many on this board. Scientific articles such as this ARE valuable. The best attitude to have is to listen with an open mind to all viewpoints. I have friends who were saved by medication and friends who have avoided deformities by not going on the drugs while in good health. I was shocked that Greg on the board said he wished people who don't share his views would die of the virus they don't think they have. Maturity on the board is appreciated.



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Re: Attitudes on HIV Drugs Revealed new
      #43333 - 11/08/02 10:11 PM

Lipodystrophy is a serious side effect. I would love to hear from others who are experiencing it. See what they're doing to deal with it. Would really interest me. But why do people who hate the drug co's, the meds. the researchers, and don't even acknowledge that HIV can be deadly want to voice their opinions on something they havn't experienced and know nothing about. Obviously they're not trying to support or help anyone in this forum. Once again, if they were, they would AT LEAST allow doctors to check their markers, see how the virus is progressing in their bodies. That way we might be able to actually LEARN something from them. All they do now is cause revulsion. Come on dissidents, show us you really care.



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Anonymous
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Re: Attitudes on HIV Drugs Revealed new
      #43340 - 11/08/02 10:28 PM

In this case support and help may be diametrically opposed. All we ever do is try to save lives and stop the madness.



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tired of it
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Re: Attitudes on HIV Drugs Revealed new
      #43357 - 11/09/02 09:25 AM

Hi,
I suffered from very mild lipo(lower arms and fronts of calves but not face....yet)I also was getting a lower belly, that despite my military like lifestyle, could not lose.I was on drugs cotinuously for 6 years and a pi was always part of the reg.I also took zerit for the first 2 years and believe that played a role.I couldn't really switch to a pi sparing reg because I had side effects with most of the drugs and was switched around alot.I didn't have resistance thankfully, but instead of my Doctor listening to me and trying an interruption with me, his solution was just keep trying new drugs.After many visits ending in tears,not to mention the emotional devastation of feeling no control over my life or decisions, I fired my Doctor and found a new one.He agreed to a treatment interuption to give me a break physically and emotionally.Although the lipo hasent' really improved, the stomach has gone.So losing fat is the easy part, putting it back I fear may be permenant.I've only been interupting for a short time(months) but so far my counts are very good.Cd4's still quite high and yes the virus did reemerge, but at a very low amount.I am just watching and waiting AND hoping the body will rebalance that it just takes some time.



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Re: Attitudes on HIV Drugs Revealed new
      #43368 - 11/09/02 02:11 PM

We all KNOW about the side effects of the medications. We don't need you to point them out. After all, most of us on this board actually take meds and have to deal with any side effects our medications produce. For you it's just something you read about, you don't live it. Seems like we're the experts on the side effects, not you. We really don't need someone who hasn't any real knowledge except what he reads advising us on our medications.

For many of us medications is just the lesser of two evils. Deal with side effects or die.



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tired of it
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Re: Attitudes on HIV Drugs Revealed new
      #43387 - 11/09/02 05:34 PM

How dare you."deal with side effects or die"?I am by no means a dissadent nor do I plan on becoming one, but attitudes like that are exactly what "SOME" lazy doctors and many of the pharm co's want to hear.I suffered with the meds for years, and for my own sanity (and close Doctor supervision)I am now on an interuption.I know it won't last forever as everyone is different, but I am hoping for a good run WITHOUT jeopordizing my immune system.Now as far as that comment, if ENOUGH people continually complain to their doctor's that the side effects are NOT acceptable, maybe the drug companies would work a little harder on developing better drugs that don't cause such awful side effects for some.Maybe they could get serious about therapuetic strageties as well.Don't we have the right to live as normally as possible.WHY should we have to look like freaks.Is this "we got what we deserved?" Everyone is different to their tolerance level of how much we can handle emotionally,but I for one need quality of life intead of quanity and I am still praying for better drugs but in the meantime I am probably deformed permenantly.NICE LIFE...more like WHAT LIFE,considering I stopped living it when looking in the mirror became unbearable.



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