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maysay1
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Posted: Jan 01 2013 at 1:59pm |
ThatGurlD wrote:
Yardgirl wrote:
I know someone who died yesterday morning. Apparently, she rarely took her ARVs
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 It's crazy how some people see fine and others go so quickly.
I wonder why some people don't take their meds. I wonder if it's like mental health meds that make you feel so horrible you'd rather risk psychosis than deal with it. |
As someone with an incurable chronic illness myself, there are a bunch of reasons. Side effects are definitely an issue. One of my meds has to be taken upon first waking up, on an empty stomach, and I can't lie down for at least 30 mins. But because of my other meds I am starving when I wake up so I never want to take that one. And then there's the meds that have you chained to the bathroom for at least a couple hours after you take them or if you eat/drink the wrong thing with them. And there's the med that is the direct cause of my hair falling out and sometimes I just want my beautiful hair back more than I want to not be sick (which is shallow and ridiculous but whatever). It's also kind of psychological. I'm on 8 meds right now and have to take them twice a day. Just taking them is a reminder that I'm sick...and I hate that reminder. Then there's the "well this is just gonna kill me anyway so what's the point of taking these meds?" thought to combat. Add in cost (I don't have this issue right now, thank you obamacare, but I have in the past). Oh and the anxiety about whether some drug/drug or drug/food (ie medication and grapefruit) interaction will accidentally kill you. And some of my pills smell weird or dissolve really easily and taste gross while I'm trying to swallow them.
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sexyandfamous
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Posted: Jan 01 2013 at 2:01pm |
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The new AIDS is herpes. Without the death sentence.
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dee1672
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Posted: Jan 01 2013 at 2:03pm |
PurpleHaze wrote:
We've had no new hiv births in DC since 2009. |
That is awesome news!
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ThatGurlD
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Posted: Jan 01 2013 at 2:03pm |
 @maysay Not shallow at all! Does it get better over time? I wonder if the HIV meds do. I'm gonna see if I can find a chart or something.
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ThatGurlD
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Posted: Jan 01 2013 at 2:06pm |
sexyandfamous wrote:
The new AIDS is herpes. Without the death sentence.
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I hear this type of thing a lot. How true is it though? Are the drugs so good that people have equal life expectancies to those who are HIV-negative? And if yes, is HIV/AIDS something we even need to worry about for ourselves and our children?
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ms_wonderland
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Posted: Jan 01 2013 at 2:07pm |
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My aunt stopped taking her meds a few months back. She says she feels better without them but she also is in denial about having the virus in general. She has had it since the late 90s but didn't start taking meds until 2011. I'm pretty sure she has some undiagnosed mental disorder as well. With everything she has put my family through, I didn't really care that she stopped taking her meds. I am all for her speeding up the process so my family can move on beyond this.
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eanaj5
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Posted: Jan 01 2013 at 2:10pm |
ThatGurlD wrote:
sexyandfamous wrote:
The new AIDS is herpes. Without the death sentence.
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I hear this type of thing a lot. How true is it though? Are the drugs so good that people have equal life expectancies to those who are HIV-negative? And if yes, is HIV/AIDS something we even need to worry about for ourselves and our children?
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IMO anything that you acquire and are able to pass on to another person that can severely restrict/inconvenience your/someone else's life is something to worry about
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EPITOME
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Posted: Jan 01 2013 at 2:10pm |
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Maysay thanks for sharing that. And it doesn't sound shallow to me. It sounds real.
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ThatGurlD
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Posted: Jan 01 2013 at 2:10pm |
Common Side Effects of HIV DrugsThe following chart lists some HIV medication side effects that are more common and a few special precautions. To prevent interactions, it is important to tell your doctor about all drugs you take. Also tell your doctor right away if you have new, unusual, or long-lasting symptoms. Nucleoside Reverse Transcriptase Inhibitors (NRTIs) | Common Side Effects | Special Precautions | Ziagen (abacavir) | Hypersensitivity reaction | Have genetic testing done prior to therapy. | Combivir (lamivudine +zidovudine) | Anemia | | Videx, or Videx-EC (didanosine or ddl) | Diarrhea, abdominal pain,neuropathy, nausea, vomiting, pancreatitis | Do not combine withstavudine. | Emtriva (emtricitabine) | Rash, and skin darkening of palms or soles, numbness, tingling, or burning sensation | | Epzicom (abacavir + lamivudine) | Nausea, vomiting, upsetstomach, diarrhea, fatigue, chills, dizziness, headaches,insomnia | Bactrim or Septra may increase blood levels; do not take with stavudine. | Epivir (lamivudine) | Nausea, vomiting, upset stomach, diarrhea, fatigue, dizziness, headaches, insomnia | | Zerit, Zerit XR (stavudine, d4T) | Peripheral neuropathy, headache, chills &fever, diarrhea, nausea, fat loss in arms, legs, or face | Do not combine with AZT or didanosine. | Viread (tenofovir) | Mild nausea, vomiting, loss of appetite, upset stomach | Do not use if you have kidney disease | Trizivir (abacavir + zidovudine + lamivudine) | Anemia, nausea, stomachpain, diarrhea, constipation, vomiting, dizziness, insomnia, headache, fatigue, muscle aches, hypersensitivity reaction | Tell your doctor about all medications you're taking. | Truvada (tenofovir + emtricitabine) | Mild nausea, vomiting, loss of appetite, headache, rash, darkening of palms or soles, tingling, numbness, or burning sensation | Do not take with didanosine or lamivudine or if you have kidney disease. | | Stribild (tenofovir + emtricitabine + elvitegravir) | Nausea, diarrhea | Can cause lactic acid buildup and severe liver problems. | Retrovir (AZT, zidovudine) | Anemia, nausea, vomiting | Do not combine with stavudine. | Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs) | Common Side Effects | Special Precautions | Edurant (rilpivirine) | Depression, difficulty sleeping, headache, rash | | Sustiva (efavirenz) | Vivid dreams, anxiety, rash, nausea, insomnia | | | Viramune (nevirapine) | Skin rash, fever, headache, nausea, diarrhea | Liver problems. | | Protease Inhibitors (PIs) | Common Side Effects | Special Precautions | Agenerase (amprenavir) | Nausea, diarrhea, vomiting, rash | | Reyataz (atazanavir) | Elevated levels of bilirubin. Nausea, headache, rash, stomach pain, vomiting, diarrhea, depression, changes in heart rhythm. | Effectiveness may be reduced if also taking ritonavir and Victrelis for hepatitis C. | Prezista (darunavir) | Diarrhea, nausea, headache, skin rash | Effectiveness may be reduced if also taking ritonavir and Victrelis for hepatitis C. | Lexiva (fosamprenavir) | Nausea, diarrhea, vomiting, rash, numbness around mouth, abdominal pain | | Kaletra (lopinavir/ritonavir) | Diarrhea, fatigue, headache, nausea, weakness, rash, insomnia | Effectiveness may be reduced if also taking Victrelis for hepatitis C. | Viracept (nelfinavir) | Diarrhea, nausea, abdominal pain, weakness, rash, anemia, joint pain | | Norvir (ritonavir) | Nausea, vomiting, diarrhea, taste changes, headache, dizziness, rash | | Aptivus (tipranavir) | Elevated liver enzymes andcholesterol levels, diarrhea, rash, nausea, vomiting, stomach pain, fatigue, headache | | Fusion Inhibitor (FI) | Common Side Effects | Special Precautions | Fuzeon (enfuvirtide) | Redness, itching, or hard lumps at injection site, insomnia, depression, diarrhea, nausea, weakness,muscle pain, loss of appetite, weight loss, flu-like symptoms | |
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ThatGurlD
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Posted: Jan 01 2013 at 2:15pm |
Interesting.....people who chose not to take meds and their stories. http://livingwithouthivdrugs.com/
This article was on one person who takes the meds. Living With HIV: The PriceBy E. Bruce Garner From AIDS Survival ProjectMay/June 2003 A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information! Many folks -- particularly young folks -- think that HIV/AIDS has become a manageable condition. Many think that they don't really need to worry about getting infected with HIV. If they do get infected, they just start taking pills and everything will be fine. I doubt that those with this mindset really understand the true price of living with HIV. I have been living with HIV for nearly 21 years. I was infected in 1982. To look at me one would have no idea that I was infected with HIV. It doesn't "show" at all. There is nothing obviously physical that would give it away. I am alive and quite healthy, no infections, no illness, pretty much a "normal" life. But it's a normalcy that comes with a price, and that price presents itself in many forms. Advertisement There's the price of just living with HIV, not knowing for how long or how much longer, not knowing whether I will be stricken with an opportunistic infection ... just plain not knowing. (Although many can rightly claim that none of us knows our fate.) There's the price of stigma. Some will not date people who are infected with HIV. Others don't want to be around people with HIV -- true even after more than two decades of HIV in the world. There's the price of being a survivor. That brings a degree of guilt: Why am I still here when so many others have died? The other side of the price of surviving is losing those dear to you who did not survive. So grief also becomes part of the price of living with HIV. There's the price of living with the regimen of medications I have to follow each day. Remembering to take three HIV medications in the morning ... remembering which ones I can take with food, which I must take with food, which I can't take with food. Remembering to take another round of medications at bedtime. Again, which with food, which without, which can, which can't. Just remembering carries a price. What if I don't remember? What if I take something twice? There's the price of the side effects of the medications. Is what I am feeling because of the meds? Why does my stomach hurt? Why doesn't food taste right? And then I end up taking another five medications every day to counteract the side effects of the HIV meds. What's the impact on my body of all of this? How long will any of it last? If these stop working, what is available to replace them? Some of the drugs I once took I can no longer take. What happens when there aren't any left that I can take? Finally, there's the monetary cost of living with HIV. The three HIV medications I take cost $3,538.87 for a three-month supply of each. That's $14,155.48 a year just for the three HIV medications. That doesn't include the other drugs to supplement or counteract the effects of those medications. If I didn't have excellent insurance coverage, where would I be? Who would pay the price for those medications? My visits to the doctor every four months average over $1,000.00 each. The cost of lab work alone is astronomical. But I have to have that lab work done for the doctor to know if the medications are still working or if we need to make a change. Sure, the marvels of medical science make living with HIV easier these days, but look at the price. Wouldn't it be a lot cheaper to have never gotten infected? That wasn't really an option when I became infected ... we didn't even know what was out there. You know what's out there. What's your excuse? Is it going to be worth the price for you? Is it worth the price for someone you love? Is it worth the price of a condom? It's still worth the price of a condom for me to make sure I don't get any further infection from HIV or give HIV to someone else. I wish the only price I had to pay was just for that condom. Bruce Garner is a member of ATI's Board of Directors.
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