POZ Community Forums
Meds, Mind, Body & Benefits => Research News & Studies => Topic started by: tommy246 on July 20, 2010, 10:41:57 am
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i have been reading for the last couple of years all the research news on here and it does give one hope but i want to ask a question just to see everyones different take on the way things are today with hiv treatment and our destiny .Sometimes i feel im to optimistic as a relative newbie , i am sure not everyone is especially long term survivors who
with there past experience are not maybe quite so up beat and are more realistic about the future . So what are your true beliefs on life expectancy and quality of life given long term arv treatment starting today.
I know there have been similar threads in the past and some people role out the old cliches like you live to you die, or you could get run over by a bus tommorow , and were all different ,we all know that so please just try and leave them out . Im asking the question about someone starting treatment today with the new treatment guidelines on modern meds who generally looks after themselves. Regards tommy.
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Oh God, I wonder about that everyday. When I hear of a member here dying, it gives me literally a panic attack. I asked Dr. Gallant about the recent study about death with higher CD4 counts. Below is the Q&A:
http://www.hopkins-hivguide.org//q_a/patient/recent_questions/re__study_about__good__numbers_and_death.html?contentInstanceId=531086&siteId=7151
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Oh God, I wonder about that everyday. When I hear of a member here dying, it gives me literally a panic attack. I asked Dr. Gallant about the recent study about death with higher CD4 counts. Below is the Q&A:
http://www.hopkins-hivguide.org//q_a/patient/recent_questions/re__study_about__good__numbers_and_death.html?contentInstanceId=531086&siteId=7151
In other words, the ma-ahvelous docta' didn't really say anything much in his reply (at least nothing that has not been speculated many times before).
Tommy Boy, I'm not particularly an optimist, but I believe that with all the changes and imporovements that we have seen in the past few years we actually have a decent chance of living a "normal" life. I'm sure that the next few years will see even better meds with less short and long term side effects.
I for one know that I will be around, being the bitch that I am, for at least 40 more years.
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Rev. Moon,
Who knows Rev. , you might even be cured !
Tommy,
Anyone who takes care of themseleves should live a nice long life.
Ted,
We are all going to die, eventually. What we are all trying to do here is ,perhaps, maybe learn something that might postpone that eventuality somewhat. Alas!
v
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am more concerned about when i will stop smoking actually !
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What is the difference between God and doctors ?
God doesn't think he's a doctor !!!!
Well I thought it was funny .
Go with the flow.
When your time is up He will let ypu know.
I believe in reincarnation anway. :)
Have a good weekend ya'll.
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i have been reading for the last couple of years all the research news on here and it does give one hope but i want to ask a question just to see everyones different take on the way things are today with hiv treatment and our destiny .Sometimes i feel im to optimistic as a relative newbie , i am sure not everyone is especially long term survivors who
with there past experience are not maybe quite so up beat and are more realistic about the future . So what are your true beliefs on life expectancy and quality of life given long term arv treatment starting today.
I know there have been similar threads in the past and some people role out the old cliches like you live to you die, or you could get run over by a bus tommorow , and were all different ,we all know that so please just try and leave them out . Im asking the question about someone starting treatment today with the new treatment guidelines on modern meds who generally looks after themselves. Regards tommy.
medicine does a marvelous job of keeping people "alive" and I have absolutely no doubt that if given the resources well live ad long as they promise.
Keeping people "alive" though is hardly
more than monitoring their vitals and responding appropriately. Terri schiavo was "alive". What I'm deeply concerned about is the quality of life were going to have. Will we suffer from advanced osteopeorosis in 10 years? Dementia in 25? I've nit seen many promises about what kind of quality of life we can expect. We've provided quantity of life and that's great. It's certainly necessary for quality of life. But quantity of life without quality of life seems worse than death.
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medicine does a marvelous job of keeping people "alive" and I have absolutely no doubt that if given the resources well live ad long as they promise.
Keeping people "alive" though is hardly
more than monitoring their vitals and responding appropriately. Terri schiavo was "alive". What I'm deeply concerned about is the quality of life were going to have. Will we suffer from advanced osteopeorosis in 10 years? Dementia in 25? I've nit seen many promises about what kind of quality of life we can expect. We've provided quantity of life and that's great. It's certainly necessary for quality of life. But quantity of life without quality of life seems worse than death.
Hey... relax :)
I have advanced osteporosis. (Matter of fact, I think Sean Strub stole my line about having the bone mineral density of an 85 year old woman and used it in his blog. ;D )
The big problem for me was when I didn't know I had it. That's when I broke something. And broken bones are painful. But they heal and then you are back to a more normal life.
Now that I know I have it, I'm treating it. Treatment didn't go well at first-- I had some very dicey moments there for a couple of months where my blood pressure was off the charts and I felt vaguely explosive above the neck. I stopped the pills, waited a few months, tried something else...
And now, things are fine. I take a pill once a month (this morning in fact). I lift weights; I run; I take extra vitamin D and calcium (as discussed with my doctors). But my whole quality of life is not impaired because of osteoporosis. The broken wrist was painful for a couple of months -- but it healed! Now its just part of a checklist of health things to manage that I grumble about sometimes -- but, you know, we all grumble occasionally.
It's normal to be anxious at first. You imagine all sorts of potential problems.
But, in all honesty, if you know about a problem in advance you can probably takes steps to avoid it (BTW get your vitamin D levels checked -- that seems to be the culprit in HIV related osteoporosis). And when problems do come up -- and all mortal flesh encounters a problem sooner or later -- you will find that you deal with it and move on.
Be strong, be resilient, be well
A
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Hey... relax :)
I have advanced osteporosis. (Matter of fact, I think Sean Strub stole my line about having the bone mineral density of an 85 year old woman and used it in his blog. ;D )
The big problem for me was when I didn't know I had it. That's when I broke something. And broken bones are painful. But they heal and then you are back to a more normal life.
Now that I know I have it, I'm treating it. Treatment didn't go well at first-- I had some very dicey moments there for a couple of months where my blood pressure was off the charts and I felt vaguely explosive above the neck. I stopped the pills, waited a few months, tried something else...
And now, things are fine. I take a pill once a month (this morning in fact). I lift weights; I run; I take extra vitamin D and calcium (as discussed with my doctors). But my whole quality of life is not impaired because of osteoporosis. The broken wrist was painful for a couple of months -- but it healed! Now its just part of a checklist of health things to manage that I grumble about sometimes -- but, you know, we all grumble occasionally.
It's normal to be anxious at first. You imagine all sorts of potential problems.
But, in all honesty, if you know about a problem in advance you can probably takes steps to avoid it (BTW get your vitamin D levels checked -- that seems to be the culprit in HIV related osteoporosis). And when problems do come up -- and all mortal flesh encounters a problem sooner or later -- you will find that you deal with it and move on.
Be strong, be resilient, be well
A
I'm really very glad that you're doing well! From the sounds of things, you've worked hard to handle your problem and you're enjoying the fruits of your labors! I am, however, still convinced that long term quality of life will be problematic, especially issus of cognitive decline.
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I am, however, still convinced that long term quality of life will be problematic, especially issus of cognitive decline.
Based on your endless nonsense, at least you're starting from a low threshold.
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It tires my mind to think about my longevity or my health in specific regards to having gotten HIV two years ago. Anyway, during seroconversion, the ID doc told me to continue leading and continuing planning on the same life as before HIV, and take what knocks HIV might throw in stride. I think the epidemiologists and researchers and doctors can speculate about all that but I'm not going to waste my brain power trying to master enough information to come up with my own intelligent speculation on my own morbidity. It seems kinda creepy to do that. I don't even know if it is rational to speculate on the individual based on research done and knowledge that is accumulated on populations. The advancements in knowledge and treatment on HIV are mind-blowing, and I think HIV cannot follow the usual models for how to do longevity studies.
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Terri schiavo was "alive".
please read Michael Schiavo's book "Terri: The Truth" before you go saying she was "alive". Her body was semi-functioning at best and that was only with the aid of machines. Only her parents and some crazy people in Congress who had no business getting involved in that situation believed she was "alive". I understand that is kinda the point you were trying to make but I think you were going about it all the wrong way by using the word "alive" to describe Terri Schiavo's predicament.
We've provided quantity of life and that's great. It's certainly necessary for quality of life. But quantity of life without quality of life seems worse than death.
I totally agree with you. When I was taking azt mono-therapy and it was literally killing me faster than my partner was dying, I quit taking the meds for the quality of my life so at least one of us would be alive long enough to bury the other one. When the Sustiva was still screwing with my brain 9 months later (there was nothing else for me to take at that time in the 90s) and I fell down the staircase, I quit meds for the quality of my life over living paralyzed by possibly breaking my neck (I had already quit working and driving because of that med). When another regimen had me puking literally every day for over 9 months, I quit meds again (because of resistance issues and the lack of any newer meds to take) for the quality of my life. Yes I would choose death over puking every day for the rest of my life.
What I'm deeply concerned about is the quality of life were going to have. Will we suffer from advanced osteopeorosis in 10 years? Dementia in 25?.
However, newer meds have finally come along. After taking over 10 years to reach undetectable, I've been UD for 6 years. ;D After being hospitalized twice and nearly dying from OIs, I haven't been near a hospital (except to take other people ;)) in over 12 years. Right now, even with only 318 cd4s (my all time high in nearly 20 yrs of testing!!), I'm healthier now than I've been in 25 years. I've lived with AIDS for almost 20 yrs, been on and off nearly every med on the market over the last 18 yrs, outlived two partners that weren't diagnosed or treated in time, and I don't have osteo or dementia. I don't have puking anymore or the runs. Nowadays most of my "complaints" have to be judged against what living to be 48 years old has done to my body more than the damage AIDS/HIV, PCP, thrush, the meds, and pnuemonia did in the past.
I've nit seen many promises about what kind of quality of life we can expect.
dude, nobody with any disease is guaranteed "quality" of life. At best doctors strive to only give you "quantity" of life with meds and treatments. It's up to you to improve your state of health (ie eat right, exercise, drink in moderation, etc), it's up to you to keep your health, and it's up to YOU to make your own quality of life. If plenty of other people in the world with worse issues (like parapalegics for example) can have quality of life, I'm sure you should be able to manage to squeeze some quality out of the quantity of life the HIV meds can help provide you. ;)
I don't even know if it is rational to speculate on the individual based on research done and knowledge that is accumulated on populations. The advancements in knowledge and treatment on HIV are mind-blowing, and I think HIV cannot follow the usual models for how to do longevity studies.
Exactly. While everyone wants to know what the future will hold for them, our knowledge and treatment of HIV/AIDS has been radically changing over the last 20 yrs or more. There is hardly anyway to predict what the future will hold because the treatments from the past to the present have been changing so quickly.
We can never forget that, for example, Atripla has only been on the market since 07. No one has actually taken the med for 50 years and lived to be 70 yet, so we can't say that that won't happen. The research can only say that someone on Atripla "should" live to be in their 60s at least.
For goodness sake wtfimpoz, I only got tested in 1992, after they put AZT on the market, because before that the only good getting tested was for was to know for sure that you'd be dead in a couple years. Even then they were only passing out AZT mono-therapy because it was slightly better than doing nothing at all. My latest regimen of Rey/Truv/Norv is lights years apart from the AZT or ddI that I was taking for the first few years I was being treated.
when I had PCP at 34, I "knew" I wouldn't live to see 35. Then when I was hospitalized with pnuemonia and thrush at 36, I "knew" I never live to see 40. At 40, taking that Sustiva I "knew" I'd never live to see 45. At 45, I wasn't even puking anymore and started a schedule of riding a bicycle 5 miles every three days. I don't fit on any charts (according to them I think I'm supposed to have died years ago LOL). There's no graph, data or research that can come anywhere near predicting my quantity or quality of life because the treatments have changed and improved so much in these few decades of dealing with this epidemic.
with xrays showing my lungs are good, blood work showing my liver is great, low cholestrol, good BP, not smoking for 500 days now, riding my bike, swimming, being with friends, family and my dogs, I now figure I better plan on being around at 50, 55, and 60. After that I don't know. There are no guarantees, so I'll just have to wait and see how I fare through my 50s. :D The way things are going, who knows, I just might live into my late 90s like most of my relatives have. ;)
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interesting points leatherman . you also say atripla has only been around since 07is that meant to be 97 ?
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Atripla was FDA approved in 2006, but that's irrelevant as the components were approved in 1998 (efavirenz), 2001 (tenofovir) and 2003 (emtricitabine).
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Based on your endless nonsense, at least you're starting from a low threshold.
S-nap!
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S-nap!
more like catty and childish...
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you also say atripla has only been around since 07is that meant to be 97 ?
oops. Philly was more correct ;) - by half a year :D LOL
July 12, 2006 was it's FDA approval date
regardless of date, the point I was trying to make is that all these meds are relatively "new" and no one has been on them say 40 yrs to prove that they will help you live 40 extra years. Of course there is a lot of clinical data that does support that (like the data from the clinical trials of efavirenz/Sustiva before 98); but for all the scientists know perhaps Atripla is good for an "extra" 80 years of life. ;D
What we do know is that early HIV meds didn't hit in all the life-cycle points of HIV and it escaped, mutated and continued replicating eventually leading to more health problems and eventually death. The newer meds (like 3-in-1 atripla or some other regimen) hits HIV harder while producing vastly fewer side effects. Everyday more and more "newbies" start off on these newer meds and experience a life unlike those who were hit in the first part of this epidemic, who had to suffer not only the effects of long-term untreated HIV infection but the side effects of high dosages and not-as-effective treatments.
too be honest, someone starting meds in 2010 (reaching UD and staying adherent) and already worrying about osteo, dementia and quality of life is just foolishly and needlessly wasting their time on unnecessary fears. Many of the serious long-term side effect issues that are being reported today are from people who have been taking meds for a long time and who probably did not start out on today's more optimum regimens.
Heck, I still like to imagine that we'll get a cure within a decade and all of this will be a moot point before any of the Atripla-takers live 50 yrs to know what long-term side effects they might experience. ;)
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too be honest, someone starting meds in 2010 (reaching UD and staying adherent) and already worrying about osteo, dementia and quality of life is just foolishly and needlessly wasting their time on unnecessary fears.
You forgot lipo. Them Atripla chirrens gets all panicky about this nonsense.
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You forgot lipo. Them Atripla chirrens gets all panicky about this nonsense.
Ah, that's my fault -- they're obviously reading too many of my threads about my pitiful sunken cheeks and concave buttocks. At least all of the seed-me-now-papi psychos at the bath house flock to me.
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too be honest, someone starting meds in 2010 (reaching UD and staying adherent) and already worrying about osteo, dementia and quality of life is just foolishly and needlessly wasting their time on unnecessary fears. Many of the serious long-term side effect issues that are being reported today are from people who have been taking meds for a long time and who probably did not start out on today's more optimum regimens.
Not sure that's quite true on the osteoporosis side. But there's an easy set of preventative measures.
Lot's of the problems are from having HIV run rampant for a while -- and about a third of us newly diagnosed folks fit that bill. (Wtf doesn't though) And if people start on Atripla or Truvada it wouldn't hurt to get their vitamin D levels checked, just in case.
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Ah, that's my fault -- they're obviously reading too many of my threads about my pitiful sunken cheeks and concave buttocks. At least all of the seed-me-now-papi psychos at the bath house flock to me.
Nothing as sexy as a flat ass. They are a big hit at bathhouses and bookstores.
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Unfortunately, to answer leatherman's post, i am proof of exactly the opposite re: osteoporosis. Im 49, diagnosed in 2002, med since 2005, truvada/ reyataz/norvir, no side effects, viral load undetectable, good cd 4s nadir 350. So explain to me why i just got diagnosed with osteoporosis? I tried a switch to isentress and my liver and kidney readings are worsening. All after 6 yrs on successful modern meds. Yes, at least this problem is real. Ill let you know if it was all a lab mistake...
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Unfortunately, to answer leatherman's post, i am proof of exactly the opposite re: osteoporosis. Im 49, diagnosed in 2002, med since 2005, truvada/ reyataz/norvir, no side effects, viral load undetectable, good cd 4s nadir 350. So explain to me why i just got diagnosed with osteoporosis? I tried a switch to isentress and my liver and kidney readings are worsening. All after 6 yrs on successful modern meds. Yes, at least this problem is real. Ill let you know if it was all a lab mistake...
There was a flurry of new-ish findings from the recent conference that you can read here:
http://www.aidsbeacon.com/tag/bone-loss/
Bottom line is that there's not a clear answer yet, but there seems to be some trends emerging.
Oh, and this one is quite interesting as well:
http://www.aidsmap.com/page/1683114/
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Here is a link to a new study, just posted on AIDSMEDS, that says bone loss may take place early in ARV treatment. Hence the importance to supplement Calcium and Vitamin D early (no one told me about this) and measure bone density early...
http://www.aidsmeds.com/articles/HIV_bone_metabolism_2581_20009.shtml
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True story, my doc checked my vitamin D levels in my last labs and they were abysmally low so he put me on a vitamin regimen to stock up my vitamin D levels and I just started ARVs about a year ago! Guess what? My brother is on the same vitamin therapy due to the same exact reason and he is NEG! You can't always blame ARVs or HIV because somethings are probably more heredity then environmental.