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refusing meds
#188228 - 04/27/06 11:21 AM
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has anyone here ever refused being put on meds. what was your reason? have you changed your mind since? why do people refuse to be put on meds..because of the side effects? do they believe that HIV meds cant make a differnce, or is more of "if i take the pill it means i am 'officially' sick". please excuse my ignorance in this matter, and enlign me with ur knowledge of this matter instead. thanks much!
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terryA
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The reasons you've listed for not taking meds, are just a very few reasons.
In my opinion,If your counts are good,your eating right, exercising,not abusing your body,and are feeling fine,I wouldn't start meds, because they do alter the way your bodies ammune system works.However,If your doing everything right and your CD4s are low and viral loads won't go down,you should face the fact that you need the help.
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 Terry Aleith
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ny10001
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Grand Master
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I think some of those are reasons why someone wouldn't want to take them. Most of the reasons, however, are often misperceptions more than reality (the side effects, for example...today there's no reason to fear them).
I've also encountered people who are somewhat fatalistic at times and say things like...just let me die naturally. Of course, once they find out how awful the opportunistic infections are and the fact that they don't kill you quickly, they often come around.
I think the reasons are usually more psychological rather than legitimate concerns.
I'm not clear, though...are you saying YOU don't want treatment, or are you asking in a more academic manner?
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shadow1
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One of the other reasons is they do not want to start too early because they may run out of medication combinations too soon and have no options. These are usually people with high T-cell counts also; they just want to leave the maximum number of options open for later when they really need them instead of starting meds too soon and not having options 5/10 years down the road.
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ScotCharles
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Generally people with HIV don't have to take meds unti one of the following happens:
1. Their CD4/CD8 ratio persists below 1
2. Their CD4 drops to 200 or less
3. Their viral load is over 175,000
4. They present with Pneumocystis carinii pneumonia; Toxoplasmosis; Tuberculosis; Extreme weight loss and wasting, exacerbated by diarrhea; Meningitis and other brain infections; Fungal infections; Syphilis; Malignancies such as lymphoma, cervical cancer, and Kaposi's Sarcoma
Taking meds before one of these events is prophylactic in nature and may or may not delay the onset of AIDS. Contrary to what one of the posters will have you believe, long term use of the meds has very serious side effects. I would counsel caution and listening to your doctor's advice.
Personally, I was diagnosed in September 1985; but, I didn't go on meds until 1994, when my CD4 dropped to 400 and my CD8 rose to 1800, making my CD4/CD8 ratio 0.22. Unfortunately, then the only choice was AZT, which I have come to regret taking.
Ah well, life is a river.
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Life is a river.
Carpe diem.
Edited by ScotCharles (04/27/06 05:27 PM)
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Bear60
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I refuse meds.
OK.
I must be either suicidal, crazy or on so many recreational drugs it dont make no never mind.
If all the tests indicate I am supposed to be on meds for HIV....you better believe I will be.
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6 ft tall poz bear in Philadelphia
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Survivor
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I would personally like to ask you why you feel this way about meds??????? What are your sources??
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Not myself, however, some times people remain in denial until their first symptom. Psychological in nature, I also have had some interaction with persons who, because of emotional issues, childhood abuse, feeling suicidal or after long battle with the illness decide to go off meds or basically just give up or don't care. I'm not sure I understand, however, intense counseling can, I am told help with these emotions that can interfer with making attempt to combat hiv/aids.
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DanielMark
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Hey Anon,
I tested poz in September of 1987, and despite the persistent recommendations of my family doctor, I kept refusing meds because I "felt fine," and couldn't see the point in screwing that up.
All the while the virus was replicating in me until at over 500,000 parts per ml, I had a sudden total collapse while standing in a checkout line at a grocery store in 2002. Don’t remember it at all.
I spent two days in the emerg of a hospital, with my ex watching over me, until the day they decided they were going to put me in a psych ward (because I kept pulling the IV out of my hand, and one night went wandering outside in the parking lot in my hospital gown – in November!) LOL
My ex Ken (good guy that he is) said, No you're not. I'm signing him out and taking him home. Which he did, then slept on the floor in the living room for a week until he was sure I was on the regime of meds okay and starting to come back to sanity.
People have their own reasons for refusing medication – mine were because of sheer stupidity.
Daniel
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Follow your honest heart
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ScotCharles
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Eric, pudding,
You believe the meds are wonder drugs, so do I but I also know they are strong medicine with serious effects upon long term use. You will after a while see significant changes in your liver functions and perhaps your white blood cell count. The problem of resistance is undisputed and the longer you put off the meds, the longer you delay the onset of resistance.
I went on AZT in 1994, because it was the only show in town then. I took AZT until 1996 when I went on DDI and then to a combo of Epivir/Zerit. I have significant liver disfunctionality due in large part to the AIDS meds. Do what you like, but the Brits, a very cautious people, advise the delay of the use of the drugs until clinically indicated.
Taking meds is a personal decision and a decision to delay their use should not be seen as a death wish.
Lux Eternum,
--------------------
Life is a river.
Carpe diem.
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cassiusp
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no one's ever called me pudding ... *sniff* :)
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SteveR
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People who are lucky enough to realize early on that they're infected and who can monitor their condition probably won't need to take meds right away. The key is monitoring, though. You don't want to just refuse the meds and leave it at that. Eventually, you'll probably need them.
I knew one guy who was an HIV denialist, and he refused any medication. He died of HIV-related lymphoma years ago. He tried to take the meds at the end, but by then it was too late.
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Survivor
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Legend
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Chuck - (he usually calls me Squash Blossom).
I know meds are going to impact me and my husband in the long term. I by far dont think they are "Wonder Drugs" otherwise, I would not have feared for 5 months, prior to going on them. But to choose not go on them at my count would be a monumental mistake and eventually slow and painful death.
I see the options to live on meds with side effects for many many years and eventual, liver failure, or die in 5 years, I picked the first option.. Given the fact I will not have any social security to speak of by the time I am 65, that will be just about right for me.
I don't fear death, I just don't want to be in constant pain getting there. So when people either choose to go on or off meds, I support them for it. These decisions are their's and only they know what they have been through. By know means am I an advocate to swallow 7 pills every day... But I do. I do for now. We will see what happens..
I also beleive in a short period of time, 5-10 years, they will find a better combo that is not so harsh to our systems, and that maybe as time progresses, we will have a better quality of life.
I know Chuck, you were a ground breaker in the 90's when the shit was really scary. I remember them to. I saw 1000 of friends I never knew, die. I also know the drug classes you started on are the ones that have grown and developed into better therapies which are less toxic (I use "less" loosley) that we newbies now are on today.
So without any further talk, I choose to live in the Hope for a brighter future, for all of us. The one thing we can control is the brightness of TODAY. Stay in that brightness..
I love you Chuck!
Edited by EricCO (04/28/06 09:38 PM)
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