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Buzz1
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Is anyone here opting NOT to take meds?
#267729 - 10/08/12 01:57 AM
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I am very newly diagnosed and the pressure to be on medication immediately is intense. I understand this is the new protocol but if someone's t-cell count is over 500 and their viral load is very low, what's the rush to get on meds?
I know many HIV positive people whose doctors just watched their t-cells closely until they dipped below 400 or 500 before advising medication.
Is anyone out there choosing not to go on meds yet? I feel very alone and unsupported with my decision thus far.
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kicker
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That's because your decision isn't a very wise one given all the information and science to date. Study after study has shown that starting meds as early as possible greatly increases positive outcomes to your health not only in the short term but long term as well.
People who start medication before their cd4 count drops below 500 show less problems such as heart, liver, and brain damage. They have less serious complications such as heart attack, diabetes, and nervous system disorders. Not to mention that they tend to not get sick as much.
People that wait see an improvement but not like those that start ASAP after infection. In fact one study actually saw a difference in the number of life threatening illness like heart attacks in people who started at 400 compared to people who started at 300.
The reason for this is several fold. One the body isn't being bombarded by viral hellions at high levels. Reducing stress and inflammation of organs and tissue. Plus by helping the cd4 cells keep the virus in check the cells were able to do what they are ment to do and kill off free radicals that cause things like cancer.
Also with today's meds and their low toxicity compared to older drugs long term effects from the meds are becoming more rare.
Plus if you are or intend to be sexually active again it's important to keep your viral load as low as possible.
Lets not even go into all the psychological benifits of doing something about those little buggers.
But all that said if you are not ready to commit to it don't bother cause if you don't take the meds exactly as they should be every day you will do more harm than good.
I have found people who have been in your shoes and honest about the reason why they refuse to start meds even when faced with all the evidence say a few things why they won't. 1: that they don't want the association with being positive. 2: they are just terrified to face the fact that they are positive. & 3: they are scared of the side effects and people finding out. That's if they are totally honest. I've heard some other tall tales but we won't go there. So what's your argument against? Maybe you should ask yourself that and be honest.
Like I said if you don't want to start don't. But it's like smoking if you know it's bad for you and you don't quit when given the opportunity don't get mad at others when they don't support it.
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Buzz1
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I am fully aware that I am positive and have told all of the most important people in my life about this fact. I have no shame around it nor am I in denial. I understand what the benefits of going on medicine seem to be at this time, but there have been no conclusive long term studies to confirm what you are saying. In fact many long term survivors who have had undetectable viral loads and high CD4 counts are developing certain kinds of cancers and heart issues that normally occur in much older people and there is speculation as to whether the medications are contributing to this or if having HIV under any circumstances simply leads to premature aging.
I am not against medicine but the long term effects of many of these medicines, especially the newer ones, are not yet known either.
I would appreciate a more respectful dialogue with others on this forum. I am struggling a lot with this and your response may have included some facts, but very little kindness. You are assuming things about me and why I am hesitating to go on medicine based on the three points you outlined and that is really just not helpful. Nor do they apply to me in this case.
I am very open to hearing from others, whether they advise me to go on meds or not. I would just ask that we can have a conversation where there is no need to diminish or judge the decisions of others.
Thank you.
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Great post, kicker!
Thanks for taking the time to put all this information together. Everything points to early treatment, and I have to say with my/our experience, I really have to agree. Not one day goes by that I don't thank my lucky stars that I got early diagnosis & treatment. When I compare my experience with others who either waited or did not know of their infection and had to try to fight back from an AIDS or near-AIDS diagnosis, I can only say that the data you quote rings only truth.
If you can tolerate it (the new meds are very patient-friendly) and afford it, early treatment is the best way to go, and the science really shows that.
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kicker
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If you took what I wrote personal that is on you. No where in my post did I make it personal. People have the same ideas of waiting for treatment with cancer cause of the toxic effects of the meds. They are just as unwise. The studies I quoted are long term studies conducted since 1997. With meds that weren't as friendly. So since meds weren't widely used until 1994 how much longer term do you want?
There's also studies that show that chronic inflammation due to poor viral control is responsible for the aging effect and cancers seen in current long term survivors not the meds.
Do what you want to do. I couldn't care less to be honest. But be honest you're afraid of something. Ie the effects of the meds. So my statements still hold true it's fear based decision. So where exactly wasn't my post respectful and accurate?
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kicker
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Also there is a great article on this site that quotes the average age at which people develop these problems compared to negative counterparts. They don't develop anything more than 5 yrs normal and in some cases later than the negative counterparts.
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Buzz1
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<<Do what you want to do. I couldn't care less to be honest.>>
Hi Kicker,
It is not my intention to engage in an argument with you. I don't think you are intentionally being hostile but if you re-read your responses to me perhaps you might understand why I feel the way I do.
I do thank you for your input but at this point I would prefer you not respond anymore unless you could do so respectfully.
I welcome any other feedback from anyone else here who is capable of engaging in a respectful dialogue. I'm very willing to hear more about why medication from the start is a good idea, and I'm also curious to hear from those who did not start right away and how that experience was for you.
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kicker
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While I appreciate the fact that you may be hypersensitive to every response you get that says medication is a good thing your assumption is dead wrong. I said I don't care because I was trying to let you know that I am indifferent to what you choose for you. Only you know what is right for you. If you believe that you would fair better at the end of the day without meds you go right ahead.
My original post was not in any way disrespectful or demeaning nor was my later post. You asked for the debate and chose to see it as an argument when it didn't side with your idea. The information is sound and I have no personal feelings towards it one way or another in reguards to you.
You made it personal and gave it the undertones when none where there. Maybe in the future before assuming someone is being an ass you may want to ask if they are. Being that they are words read and hold no inflection like the voice does.
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crabman
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I opted out. About 3 years ago. Now back in 1996 when I first tested positive I did take medication for many years. I have had lot of issues from side-effects and gastro issues with many of the medications. Everything from Saquinivir and Cirivin to Norvir.
I finally decided I needed a break. This doesn't mean I won't go back on medications when I feel I need to....and if I have insurance to do so, but for now I feel good.
I personally think it comes down to a quality of life issues. Yes, skipping meds may very well cause less years....but if those less years are full of feeling better with more will and energy to do more...so be it.
Besides, for many personal reasons, I've come to distrust the advice of doctors. They are not God. They get stuff wrong....a lot. 10 years from now when the information is in on long term effects of starting medication early, we all may find out it was the wrong choice. It won't be the first time science and doctor's have reversed their position.
Bottom line. It's a personal choice. Other's opinions just don't matter. Do what you feel is right for you.
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Buzz1
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Thank you crabman, that's a very valid and interesting perspective. I also am aware that even more effective and less toxic treatments are being developed-and if I start a first line regimen I may not qualify for those when they become available--such as a weekly injection if that should ever come to fruition.
I also think we live in an overly medicated society--when someone has cholesterol over 200 they immediately want to be put on lipator, when hypertension is an issue the first response is a prescription.
Again, I'm not opposed to medicine but no one and no scientific research has conclusively demonstrated to me that beginning meds immediately after seroconverting is the only wise choice.
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Hi Buzz,
I don't think anyone was being or meaning any disrespect - when I read the posts, I think they were just passing along all the data that we (the world health professionals) have so that you could see what all signs seem to point to is the truth. They forwarded that information to you and wrote it so clearly to help you because we all try to help take care of each other.
I can understand your desire and curiosity to hear from people going it without the meds, but that really is dangerous. You have to make your own decision, as we all do, but I hope you have all the accurate information possibly available and think very carefully. There are a lot of lies out there, and it's dangerous - it costs lives and causes a lot of suffering.
Take good care of yourself.
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riverprincess
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Had a well known ID doctor speak at our support group last night and I saw the reasoning for taking meds as early as possible. Lets pose it this way, If your fighting a battle why wait till there is 50,00 enimies to fight when you have the chance to beat them when there is only 500. . The longer you wait the harder it is on your body to get to being undetectable which is the goal of every pos person.
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Buzz1
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Thank you for this Riverprincess..I totally see what you mean. But if someone's viral load is nearly undetectable and their t-cells over 500 without medicine, is it still necessary to start meds? Of course a person should check their numbers every two the three months and watch for any decline in CD4 count or increase in viral load.
From an article on aidsmeds.com:
<<Experts strongly recommend that HIV treatment be started once the CD4 count falls to 500 or lower. This recommendation is based on the results of clinical trials and cohort studies. As for those with CD4 counts above 500, experts also recommend therapy, though not strongly because neither clinical trials nor long-term cohort studies have confirmed whether the benefits of starting antiretroviral treatment earlier—essentially used by everyone living with HIV—outweigh the potential risks. >>
http://www.aidsmeds.com/articles/WhenToStart_4755.shtml
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riverprincess
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The key words you said was if viral load was NEARLY undetectable. Nearly still isn't undetectable. Again how many soldiers would you rather fight against. It's not all about t-cells, it's about viral load.
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Buzz1
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Yes but I wonder which could do more harm long term: the effects of a viral load of 20,000 or the effects of some medications (the long term effects of which are not yet fully understood).
Just recently it was reported that an ingredient in Atripla leads to neuron damage. And I wonder about all of the people who until recently were advised by their doctors not to go on meds until their t-cells fell below 400 or 500--are they all just plain out of luck now?
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