20 Feb 2011

Health:Living on Drug, Drugs to Live

Category: Health

Hardly a week goes by when I do not hear someone say that; “HIV is a manageable chronic disease” and this is generally a true statement especially in industrialized countries like in North America (but not according to everyone). There are those who can live well with HIV (their HIV is chronic and manageable) and those who have  difficulty achieving a healthy life (their HIV is closer to life-threatening). Even for those that have found HIV to be ‘manageable’ there is much more to the story of living with HIV and medications.

For HIV to become ‘manageable’ medications are needed, medications that are not without their own costs. Modern antiretroviral therapy drugs called “cocktails” have been central in this large step towards HIV treatability. These medication cocktails can reduce the viral load in individuals, to below detectable levels, although it does not eliminate the virus completely.

Sadly though, these medications have many possible side effects, ranging from headaches and lethargy, to hair loss and nausea. Many individuals that have taken antiretroviral for long periods of time also experience other side effects and symptoms, such as heart problems, Liver Damage, Lipodystrophy, and Neuropathy.

Not everyone on medication has or will experience side effects. But for those that think that managing HIV through medication is easy all the time for everyone, you need to know that there is much more to the story.

Danny West: Managing Antiretroviral (ARV) Side Effects

Cass Mann: With Antiretroviral Drugs (ARVs), Does HIV Still Matter?

Stephan

38 comments for Health:Living on Drug, Drugs to Live

  • It’s stories like this that freak people out more and more. I’m not saying people should go around and have unprotected sex, but the truth is that HIV is VERY manageable with HAART medication therapy. Modern HIV medications have very very little side effects, almost to the point where most people experience NO side effects. Long-term use of these medications also show promising results and indicate no long-term harm.

    The truth is, living with HIV with today’s medicine is not a traumatic experience, but the people who tout it as such are trying to scare you. What they do not realize is that stories like this make newly diagnosed HIV patients chose to NOT start on medications, and then they end up dying in a couple decades.

    START on meds NOW if you’re HIV+ – research indicates the earlier you start, the larger chance you have to live a normal life. Don’t believe the alternative medicine people – real medicine has millions of scientists to prove them wrong.

  • And, for a bit of anecdotal evidence… I take Isentress and Truvada. One pill in the morning, two at night. Zero side effects, undetectable virus, CD4 >= 750. :)

    I have had my own patients who take HIV meds – they led normal lives. GET TESTED early and make the right decision to take HAART therapy.

  • What was the use for this article? I think it would of been more productive to spend the time writing on how to protect yourself, encourage for more testing and encourage others that are positive to stick to their meds. Like Nick said above, its stories like this that freaks people out. Fear is not the answer but education is the answer.

  • It goes without saying that no one would wish to be HIV+, but the simple reality is, with todays modern medicine, it IS a manageable chronic disease, much like diabetes or Lyme disease. I take a few pills every nite, have been undetectable for several years with a “normal” CD4 count and no side effects. My doctor says most HIV+ patients today can live a very normal productive life with little neegative effects. I guess there will always be those who must have a good crisis to rail against.

  • Actually, I think the point of this article was to break us out of the complacent mentality a lot of us seem to have regarding HIV/AIDS.

    I’m not saying we should revert to the scare tactics of the 80’s. However, there’s a lot of information out there that’s misleading people into believing that life on ARVs is no big deal. In my opinion, this is just as detrimental as telling people they’re soon going to die a slow, shameful, painful death.

    More and more often, I see guys pretty much taking a positive diagnosis as a green light to bareback their brains out. One thing I’ve learned from working in HIV/AIDS prevention and just life in general: no matter how bad you think your problems are today, things can always get worse.

  • One more thing to think about, I’m very familiar with the late Cass Mann. His messages were right on. To say combination therapies are similar to chemotherapy is a strong statement; it’s also a correct statement. When we think about cancer patients and chemotherapy, it’s a short-term process before a break is needed or it will eventually kill the patient. HIV/AIDS combination therapies are to be ingested daily, forever. One has to imagine the effect this will have on the kidneys, heart, etc. We don’t know yet entirely what the effect of ARVs have long-term. I’m guessing we will be seeing a lot of kidney problems/transplants/failures.

    It’s a big deal. Why not avoid it at all costs if you can?

  • I concur with Nick and Rex. I just observed my 25th year positive with HIV/AIDS. When diagnosed there were no medications available by prescription. I started treatment that year with a clinical trial of AZT. Due to drug resistance and at times a lack of treatment options, I have taken 17 different HIV meds and repeated two drugs several years later as part of “salvage therapy.” I have taken most of the “serious” side-effect drugs and as expected they were unpleasant but essential to my survival. (I have had single digit CD4 counts). Today, due to resistance I take Prezista, Isentress, Truvada and Norvir. My CD4 is over 500 and my viral load is less than 25 copies (undetectable and has been for three years). I experience virtually no accute side-effects other than some co-pays. To the credit of the original blogger, I do have chronic longterm side-effects requiring medications, including high blood pressure, elevated cholesterol and, in recent years, increased depression. I would be remiss if not to state it has not been easy and more to the point, I adamently disagree with anyone that characterizes AIDS as a “manageable” because I am certain many naive or poorly informed individuals are far too lax regarding their practice of safe sex on a consistent basis. The most recent medications are fantastic but I as long I continue to attend an occasional funeral service for someone close to me… well you get my point.

  • I just wanna do drugs and party forever

  • I think the article does a great job of letting readers know that nothing is st in stone. There are many possible side effects of any medication. It’s made clear here that some people may not experience side effects. It’s wonderful when that is the case for you, but it’s certainly not the case for everyone.

    And since this article is one tiny piece of what I believe will be a larger information source, I think it’s fine as an educational tool.

  • I do not think that this article, in any way, has employed scare tactics or is misleading in any way. As was stated in the article, ‘Not everyone who is on medication has or will experience side effects,’ and Nick, it seems that you are one of the lucky ones, for which you should be grateful. There are people who are still experiencing debillitating side effects from the mixture of medications and, as was referenced in the article, many of these long-term side effects are still only now becoming apparent. So there is definitely two sides to the coin that you are holding and I beg you to flip it over: one side has this agenda to point out to those who DON’T have HIV the ramifications of an unsafe sex life and, though this may sometimes seem like ‘scare tactics,’ their reasoning is but noble; the other side, apparently yours, has this agenda to point out that having HIV isn’t as bad as it used to be and anyone who doesn’t concur is wrong. Sometimes people may, unfortunately, use scare tactics to get their point across to the masses that this is definitely NOT a disease that anyone would want; I don’t think this article was, in any way, meant to convey fear. Your agenda, however, is very questionable. I ask you, to what end are you arguing the ease of living with HIV?

  • RichBaer; VERY well said.

  • I sort of agree with this article although I’m wary of frightening people and also colouring their view of positive people as modern day lepers.

    I’m on my third combination in 18 months and the first two I tried were intolerable. I’ve settled on my current one better, but I still have blinding headaches, fatigue, bowel issues, itchy hives and dermatitis. Most days I wake up feeling hungover and that doesn’t always wear off.

    So, yeah, I may not die from AIDS, but even with an undectectable viral load and a decent CD4 count, I’m a shadow of my former self and it’s likely that this is as good as it ever gets.

    @Nick – in the UK, it’s very unlikely that anyone would be offered Isentress as first treatment option. The standard here is Atripla.

  • After reading this article I must say that the coments I have read are very disapointing concerning AIDS being manageable. I watched my partner who was diagnosed in Feb. of 2006 go through all the symptoms that we all hear about, he had to change medicines constantly because they would stop working, and eventually he made the conscious decision to stop trying treatments because the different experimental drugs he was having to take to try and get the disease under control were making him so violently Ill and they would all stop working. He died this past September at the age of 36.
    Just because the disease is manageable for one person doesn’t mean it will be for the next person. We should be encouraging safe sex practices, not discussing how ‘easily’ the disease can be managed. When someone is 20 and hears someone talk about them being POZ for 20 or 25 years, no symptoms, undetectable and a high CD4 count, that encourages them to be less concerned about being safe. What everyone needs to realize is the disease is different for every person.
    I cared for my partner, tried everything to make him comfortable, and watched him die from a disease that can be avoided. If anyone has watched someone die from AIDS on a daily basis, they would not say it is like diabetes and tell people how manageable it is. They would be encouraging safe sex practices to everyone.
    Remember that the younger generation looks up to the generations ahead of them. Encourage safe sex and testing, we can save lives.

  • AFTER SO MANY YEARS I READ AND SAW ARTICLE POINT OF VUE YES MEDICATIONS SAVES LIFES FOR SOME PEOPLE AND OTHER DON,T .AS LONG WE ARE IN STOCK MARKETS THE DISEASE WILL STAY AND WHY WE NEVER TALK ABOUT INSURANCE ,FDC KEEPING CONTROL OF EVERYTHING SO AFTER WHEN HEALTH DEPARTMENT REGISTER YOURSELVES WHERE DO WE GO ADAP,MEDICAID AND YES SOMES STATES CAN,T AFFORD TO PAID FOR HIV BUT WHO IS FAULT AND YES I WILL BE DEAD IN 10 YEARS WHY BECAUSE AFTER SO MANY PILLS SIDE EFFECT THAT WILL KILL ME .OR THE LAW IF I DON,T SAY I,M HIV BUT WEAR CONDOMS SOMEONE CAN KILL ME OR GO TO JAIL FOR NOT HAVING SAY ABOUT MY STATUS YES I,M ALIVE BUT I PAID A VERY HIGH PRICE NOT WORTHY

  • After 25 years with HIV, I weep for young people who think it’s a manageable disease. “Nick” above sounds like a shill for Big Pharma — do you really EXIST???
    Not only should everyone use condoms, kids need to be made aware of the central issue here — which no one has addressed: How are you going to afford these meds?? I’ve been kicked off ADAP once before and am getting cut off again. Every day of every week is spent worrying which programs are getting cut more: just read the newspapers!!
    Do you really want to live your life in fear of deranged Tea Party govt. officials who are cutting more each day? I’m sixty and it’s tough — how about when you’re 70 and 80??
    Not to mention the four surgeries ten years ago … Big Pharma WANTS you to get sick. Wise up!!

  • To say I have an agenda is a bit extreme. My point is that people should practice safe sex and encourage others to do so, however, if you do become positive it is not a reason to take your own life or commit yourself to isolation. There is no need for any kind of scare tactics like this, even if it holds some truth because it only makes the lives of the HIV+ even more miserable since we become lepers.

    I know not everyone will agree with me, especially the so-called HIV “educators,” but everyone should think of the HIV- *AND* the HIV+, because we’re still people after all. And to all of you who think I’ve lost my mind: you should open your eyes to the truth a bit more and gain some compassion.

    @Iasaac: It was approved recently in the US for use in treatment naive patients for good reason. It lacks the side effects like others, especially Atripla. Atripla is one of the decent ones, but the Sustiva in it has a high-rate of uncomfortable side-effects (certainly not for ‘most’ though).

  • The stigma associated with having HIV is still prevalent and still scares away people from getting tested. I know quite a few guys who have not been tested in 5 years yet still list Negative as their status. You can only be sure you’re negative until the first person you have sex with after the blood is drawn (or swab) Unsafe sex is still very rampant Saying it is manageable is not a reality, it is a daily pain and often lonely disease

  • People exaggerates side effects some times, besides side effects don’t affect everyone.
    I mean it is not ok to go having unprotected sex ok because if you get HIV you just get on meds to be well.
    Being on med for ever is not a pleasant thing, but as long as it keeps you living healthy what is the problem. Why scaring people with articles like this one?
    People will think they will die faster with articles like this, making HIV AIDS and then really die.
    I was scared for a long time about HIV meds until I got tested and discovered I had AIDS, my doctor put me in Atripla, just one pill a day and now I am undetectable and 700 plus CD4. I have beem on this drug for over 5 years and no side effects at all and I dont get sick like I was getting when I was taking no medicine, I dont even catch colds or the flu like I was before.

  • Nick, it is the goal of this blog to provide useful information that can inform individuals’ choices. I introduce topics (500 words or less) fully expecting readers will fill in the blanks.

    Each of us has a wealth of experience regardless of our HIV status and/or educational background. This blog is intended to be an educational conversation coming from the perspectives and experiences of the members of Adam4Adam.

    Thank you (and all those that comment) for your perspective and for being part of the conversation!

  • @Stephan – I posted something and it is no longer here. What did I say that was offensive? I just spoke the truth. If this is supposed to be a forum of free speech, then why am I being censored?

  • I think this was very well written, and I do think some people do OK on medication for now–No one knows if these people are going to have liver damage, kidney damage, or perhaps even a mutation of the HIV in 20 years or so because of the medication.

    The sad part in all of this is the growing group of Gay men who seem to think HIV is over and that everyone does well on medication. This is why education and a strong focus on prevention is needed among all ages groups.

    Being educated that HIV is not something one would want, and should protect themselves from is not a “scare tactic” it is called being real and protecting yourself.

    On thing that has me in a bit of a worry is people telling others to make the “right” decision and start HAART. Unless you are a Dr and know the person personally as a patient saying such things is irresponsible. These drugs are very much like chemotherapy, and like all drugs there might be counter indications for that individual.

    Lastly, I am going to be upfront and say that I do think there are a small number of people online and real life who are trying to manipulate others by making claims of how “easy” it is to live with HIV. I have strong suspicions of what they are up to, and I pray to God that I am wrong.

    Maybe it would be a good idea for A4A to an article on “bug chasers” and so called “gift givers” it is a very real phenomena that should be discussed along with barebacking.

  • QUOTE: More and more often, I see guys pretty much taking a positive diagnosis as a green light to bareback their brains out.

    Eric, this is why I think there needs to be a different message sent out. People are being mislead into thinking HIV is no longer a big deal, and that everyone does well on medication.

    Even worse is rapidly growing group of people who think you are disrespecting them and are biased if you say anything negative about HIV, or if you think the focus should be on prevention.

    I am not one for living life in fear, however I do think some fear and an understanding of consequences is healthy.

  • There is another reason why people should start treatment. Study after study shows that HIV is primarily being spread by guys who think that they are negative but are positive. Two-thirds of all new infections are caused by this small group of guys who are spreading HIV without even being aware that they are doing so. Most of the remaining 1/3 of new infections are caused by people who are aware of their status but not being treated or for whom treatment has not worked (which is a very small percentage). The lower a viral load a person has, the less able they are to infect another person with HIV. Recent studies- that are dictating HIV policy recommendations in Europe- have shown that it is improbable for a person with an undetectable viral load to infect another person.

    Unless someone has a better idea, it would seem that treatment is the most effective way to dramatically reduce the number of new infections. In case anyone hasn’t noticed, new infections are increasing among certain age groups- especially younger men, who have been inundated with safe-sex messages their entire lives. It’s not a lack of education, but the fact that most people fuck up every now and then, they make mistakes, they’re not perfect. People aren’t getting HIV because they’re going on bareback binges, they get it because of that one mistake or because they trusted someone that wasn’t aware of their own status. My agenda is to stop new HIV infections, period- and that means encouraging everyone to get tested. I think that a lot of people are so personally invested in old-school prevention programs and educational outreach that they don’t want to admit that it hasn’t worked- evidenced by the fact that HIV rates are increasing among the people that they are specifically targeting!

    I do have a problem with the language used by some of the people on here. To say that “some people” do okay with new HIV treatments is like saying “some people don’t die in car accidents.” The reality is that MOST people starting treatment now do okay. Some don’t.

    Telling people the truth about how treatment has changed is not going to encourage riskier behavior, but will encourage them to get tested and look at treatment options if they have made that one mistake- instead of spreading HIV. They also need to know that there are resources to help them. Our prevention policy needs to be focused on making testing available in as many places as possible, and we could reduce new infections by half in a couple of years if this were done correctly.

  • I take drugs to manage my disease. if you read most online profiles that makes me pretty much a modern day leper (DD free UB2). One would think that would make me more prone to hide my status in an effort to get some action; however, considering it was some lying MFer that gave it to me, and considering most gay men are callous jerks anyway, i’m happy and just fine living a life of chastity and solitude until i’m free of this insane nightmare called the human race.

  • OH MY, I cannot even get past the reading of Nick’s “living with HIV today is not traumatic” BRO who are you kidding I will just leave it at that b\c I do not want to get all nasty but my GOD man you act like getting HIV is like catching the common cold, its a TERMINAL ILLNESS WITH NO CURE lets not down play this fact to make it acceptable in our own minds! PLEASE !!

  • I have been sharing readings from a book called “You Don’t Have to Die: Unravelling the AIDS Myth” by Leon Chaitow and James Strohecker. Look it up and let me know if you have found any of these remedies and alternative therapies. I would love for the GLBTQ to share and possibly start a dialogue with the potential of future research opportunities. I have lost too many people, due to their resistance to drugs and the lethal doses of drugs in the early 90s to count. It seems as if todays youth is moving in the right direction with alternative therapies that support proven traditional therapies. Detoxing is key in all therapies. . . so yes, there are ways to achieve the longevity and good health at the same time. Read the pH Miracle by Robert O. Young– look up detox meds on Dr. Phil. Lets not leave out Meditation and Spirituality! Make it work people. We have MANY options– but the safest option is SAFE SEX! We’ve come this far by faith– lets maintain our health and help scientists to find the CURE!

  • Please someone then tell me why an MD who wanted to give me an HIV test said and I quote (Regarding treatment.) – “Oh and it’s so manageable now.” This is from a large health care provider. I told her I would not give my consent for the test because of cross reactivity of a very recently Hep-B vaccine. She agreed and stipulated to that fact and then the lab DID THE TEST ANYWAY. I don’t trust anything anyone says. They just wanted to get me into THEIR program they get grant money for. After the research and reading I’ve done, I will NEVER have another HIV test again. They want to hit hard and fast… but not with my body.

  • I appreciate this article… For folks out there who say it’s completely manageable; quite kidding yourself. Yes, I find it as more mind over matter that leads you to be able to manage your symptoms well; of course with the use of a strict pill regimine. BUT DON’T SPEAK FOR ALL OF US…. Speak for yourself. Your opinion is welcomed but is NOT fact. :) Take care out there folks. Have fun, and be safe!

  • The real issues here are stigma and education.

    I used to be the one holding the gavel in judgment of those who were HIV positive, until at age 30 I was diagnosed HIV positive myself.

    The social stigma of HIV and it’s ‘doomsday’ reputation is outdated and needs to be smashed. I know from personal experience that this fear-mongering can send one into a spiraling depression and cause a self-hatred that is more damaging than any disease could be.

    The real answer is education, getting tested every 3 months, and easy access to medication and counseling from a trusted medical professional as soon as possible. With the state of medicine today, I live as I did before and have a normal, healthy life expectancy.

    I encourage you to be compassionate and educate yourself.

    Becoming HIV positive (undetectable and healthy CD4=874) was one of the most enlightening things to happen in my life. Not because I can now go crazy, but because I’ve realized like anything in life, it’s what I do with it that matters.

    No, I don’t use drugs or even drink anymore. I respect and honor myself and my health, and I am happy to be alive. HIV positive people are just people, and anyone who treats us otherwise is a bigot and uneducated.

    I am thankful to the hard working doctors and researchers that devote their lives and careers so I can live today as a healthy and happy man. And I plan to live a very long time, and have no side effects from my medication.

    For us as gay men to sit around and point fingers is disgraceful. This is a disease that thrives on silence, fear and hate. We should be celebrating each other and be grateful for the advances in modern medicine and look toward a cure and vaccine. There are countless people dying of this disease because of fear and a lack of education. Educate yourself. Haven’t we been fucked over enough by others?? Must we do it to each other too??

  • There is another side of this discussion that All gay men need to read. There are several publications (namely in the Washington Post) on line. Look up “Elite Controllers”. The information supplied would maybe take the bigoted attitude many of our fellow gay men seem to have towards those who are HIV Positive. There is even a section in one of the articles where it actually says, through study, that those who are un-dectable( Elite Controlled) and on Meds. are actually very safe. Besides that, I know of several men on here who state they are Neg. when in fact , I know as a fact they are Positive.
    Those men who think they are special and better than those who are Positive need to examine their inner selves and get off the negative attitude. It is a manageable/chronic illness, to most. And just because someone is Positive and healthy un-dectable does not mean they are un-touchable.

  • I have 3 relatives, and a few friends who have HIV totally I know more than 10 people…and NOT ONE expressed any side effects, all of these people are on ATRIPLA. They said the only side effect they expreinced is Nausea “In the first few weeks” NOW!!! they express it like “NO SIDE EFFECTS” TRUTH IS……HIV is individualized!!! and the treatments are to. HIV is manageable. PEOPLE NEED TO GET TESTED so the VIRUS will not damage ya body before you start treatment. People get tested and have low cd4 and high viral load. I THINK the earlier you get tested the better…Ya have to find whats right for you and be in control of your health…if a regimen is causing unbearable side effects than one should consult with thier doctor. You dont have to live with negative and unbearable side effects…Lastly, ALL MEDICATIONS CARRY SIDE EFFECTS, WHAT affects one person in one way MAY NOT afferct the other person. Treatment has come along way, people are living!!!! but alot of folks are bitter about their status, and put scary info or misleading info. When one speak of HIV, Make sure you speicfy because your issues and complaints are NOT EVERY one elses. GET TESTED, GET TREATMENT WHEN NEEDED, LIVE LIFE and LIVE ON

  • AND PEOPLE NEED TO STOP FOCUSING ON THE NEGATIVE…BOTTOM LINE IS IF U HAVE UN SAFE SEX, hiv MAY BE YOUR RESULTS….

    STOP CONCENTRAING ON WHAT WILL KILL YOU AND FOCUS ON WHAT CAN….

    HEART DISEASE
    HIGH BLOOD
    DIABETES

    HIV COME WIT SO MUCH STIGMA, but YOU CAN LIVE WITH IT.

  • Once you start to “own” your hiv+ status you can take charge of your health care and life…I was diagnosed in July 2010…undetectable now tcells way up…everyone in my life knows and is very supportive…healthy living is key..eat right get plenty of rest…treat yourself well, stay on meds and it all becomes manageable……Get a good doctor….ask questions…meet other positive people for friendship and support. exercise is key for gaining a positive outlook….and the fact that it makes you look better(drives the afraid neg guys crazy) a little humor there oh yeah you have to laugh…..laughing is good

  • I really, enjoy reading you blogs, this one sticks out, I think some of you blogs need to be sent to an employers, so they can understand what some HIV+ patient go through,you would think my employer would know and understand since I’m a employee of UCSF MEDIAL CENTER, which I get a lot of attidue having FMLA.

  • Greg, if there is any publcity of any sort or bad language or anything that I judge not appropriate, or 1000 spelling mistakes in the comment, I take it off. I do, not Stephan, me ! And it’s not a forum of free speech no, because our blog would look like a mess… I decide what I post and I read everything ! So be careful with what you write dude !
    Dave

  • QUOTE: When someone is 20 and hears someone talk about them being POZ for 20 or 25 years, no symptoms, undetectable and a high CD4 count, that encourages them to be less concerned about being safe. What everyone needs to realize is the disease is different for every person.

    I agree 100% and think it is the height of insanity for the focus to be moving away from prevention and onto this sick evil delusion that HIV is a walk in the park.

    It is really sad to see that those of us who want to prevent ourselves and others from having this disease at all cost are being branded as misguided, self hating, or in some way lacking knowledge.

    Self respect, use of a condom, getting to know your partner are all things that play a huge role in reducing the risk of HIV infection. Testing is important, however it should not be seen as a replacement for prevention.

    More people who are not living well with HIV, who are still losing loved ones, and know the horrors of this disease need to step forward so that young people can see that an ounce of prevention can save them from a pound of heartache in the future!

  • Those of who have healthy sex lives, practice safe sex, and are HIV negative need to speak up also because there seems to be this message to youth of “why bother” you are going to end up with it sooner or later.

    Condoms, getting to know your partner, not sleeping around, and self respect all are strong prevention tools!

  • Safe Sex, yes! Watching out for STD’s, yes since the beginning of time. But guys, House Of Numbers. BIG PHARMA wants you to believe, take the tests (even though they don’t measure HIV or antibodies and are subjectively read), get sick, and believe in HIV. And once again, why do most major gay websites and publications shill for BIG PHARMA. HIV has always been a way to manage and manipulate behavior, not cure disease. If HIV goes away… major revenue streams, not for profits, causes, AIDSWalks, benefits and related monetary grants cease to exist. You have to believe. Because if you take a closer, uncensored and educated look, the science ain’t there.

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