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Author Topic: What next, what do you think?  (Read 3325 times)

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Offline futureistic

  • member
  • Posts: 2
What next, what do you think?
« on: September 29, 2006, 03:26:50 AM »
Hello all! I'm new to posting here, but have spent the better part of the last two weeks reading the post. By far the best HIV site on the web, because of all the fine people who make up this place.

Here is my crisis, if you will. My mind! I've accepted my fate and can live with it and deal with it one day at a time. But my history is one of being obsessive and a perfectionist. I'm sure you know the type. I want everything to be in order and make everything just right. I have a hard time if things are less then perfect and this includes my health. Having a disease, I'm all too aware, that things will not always be perfect.

In attempts to satisfy my perfectionism, that drives me mad at times, I am looking for good, honest opinions from those in the "know" regarding the future of HIV treatment. I'm not looking for pie in the sky scenarios, or doom and gloom, but an honest truthful opinion of those forum members who follow the latest developments. I know therapies today are quite affective, but let's face it, they cannot be the final answer.  I also do not believe an outright sure is possible anytime soon, based on my readings.

I'm looking for iyour very honest opinion, where you think HIV treatment will be in 5 years, then 10 years and then 15. I am asking this, because I have concluded in my own research, that assuming we can develop a broad spectrum medication, that eliminates all chances for resistance, is easy to comply with, and has minimal, to no side affects, that we can truly plan a full life-span. If this type of therapy does not come about within the next 15 years, then my life span will likely be cut short dramatically. I base this on tons of research and it's my own to believe, or disapprove. (if you will)

So where do you truly, honestly, think therapy for this virus will be in 5,10, 15 years.

Now, not to influence your answer, but my doctor, predicted that we will likely see that breakthrough therapy in 5-10 years. He stated, I seriously can envision a once a day, or one a week pill, or injection, that keeps the virus in check, with limited chance for resistance. A single medication, to be taken for life, with limited side affects. He thinks it will be based in the area of eliminating, or being able to hide the proteins, HIV uses to attach itself to and duplicate itself.

So what does everyone think? Where are we going from here??

Thanks,
Terry

Online RapidRod

  • Member
  • Posts: 15,276
Re: What next, what do you think?
« Reply #1 on: September 29, 2006, 03:44:19 AM »
You want honestly? Who knows? I've lived with this for 22 years and I expect to live out my life time. That is how I plan it.

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: What next, what do you think?
« Reply #2 on: September 29, 2006, 04:12:22 AM »
After 23 years with HIV; speculation is not one of my best gifts.  Personally, I don't see any of this therapy working for the long run; as the internal organs are not capable of holding up to the chemistry that these drugs bring to the internal workings of the body.  Few of us will survive very long term therapy (15 to 20 years), due mainly to the effects of the drugs on our internal organs.

The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: What next, what do you think?
« Reply #3 on: September 29, 2006, 05:30:31 AM »
Expect to live forever.
Positive since 1985

Offline Maestro

  • Member
  • Posts: 225
Re: What next, what do you think?
« Reply #4 on: September 29, 2006, 08:10:51 AM »
After 23 years with HIV; speculation is not one of my best gifts.  Personally, I don't see any of this therapy working for the long run; as the internal organs are not capable of holding up to the chemistry that these drugs bring to the internal workings of the body.  Few of us will survive very long term therapy (15 to 20 years), due mainly to the effects of the drugs on our internal organs.



Moffie,

If I may ask, how many years have been on meds?  Have you been on them for the entire 23 years?  Thanks for the insight...always enjoy your posts.

M

Offline Iggy

  • Member
  • Posts: 2,435
Re: What next, what do you think?
« Reply #5 on: September 29, 2006, 10:54:04 AM »
.
« Last Edit: January 12, 2007, 08:46:56 PM by Iggy »

Offline Lisa

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  • Formerly known as sweetieweasel/Joined Nov. 2004
    • http://www.myspace.com/lisanowak58
Re: What next, what do you think?
« Reply #6 on: September 29, 2006, 11:06:10 AM »
Hi Terry,
I tend to look at things in a pragmatic manner. As I certainly hope that there will one day be an excellent therapy (as I'm not sold on the whole cure thing) to abate the worst of this virus.
I try to take care of my body, and live each day as  best I am able.
There are no correct answers. Your own attitude, and hopeful outlook will serve you better, than trying to get someone to tell you that things are going to be just fine in the next few years.
Grab hold of your own best outcome by doing what you can today, and leave tomorrow for tomorow.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: What next, what do you think?
« Reply #7 on: September 29, 2006, 11:22:01 AM »
Moffie,

If I may ask, how many years have been on meds?  Have you been on them for the entire 23 years?  Thanks for the insight...always enjoy your posts.

M



Maestro,

I have been on medications for the last 11 years, and HAART since it started about 8 years ago.  My heart is weak, my Billiary tree is dysfunctional, my liver is weak and getting worse, and that is only the things I know about.  Bone and tooth loss are also very dibilitating in people with long term HIV infections, and of course, put on top of that aging and you have a very bleak long term outlook.  I know many will not agree with me, but being in the business, and dealing with loads of HIV+ people and watching many of them die from the things I have illustrated here; leads me to believe the facts, rather than the "fiction" that big PHarma, and Big Medicine are pushing currently.  I want sanity in HIV work and research, but unfortunately I feel very much like a voice in the wilderness when speaking of this, as most people are anxious to accept the "bullshit" rather than what is proven fact.  Proven facts show people are dying in record numbers from organ failure, which the National Institutes of Health, and Centers for Disease Control REFUSE to connect to the wear and tear of HAART.

Now for one very nit picking little bit of information for all of you.  One pill therapy is still HAART, the only difference is it is all in one pill.  Simplicity does not equate "less damaging effects on ones' body"!!!

In Love.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline belgium

  • Member
  • Posts: 30
    • jean's blog
Re: What next, what do you think?
« Reply #8 on: September 29, 2006, 11:39:37 AM »
first , woory will kill you to! today i learned that a friend of me, exactly my age is dying from lung cancer, at moments like these i realise i could be worse off. ok i have a dissease wich at the moment can not be cured, but there are drugs wich, although in the long run can and probably will be harmfull, still they keep us alive for the time being. my friend wouldn't mind swapping with me now, no drug that's gonna save her.

as for the future, it's totlay futile to try to speculate about it, there might never be a cure, or in 3 years from now someone in some lab might shout "HOORAY THE NOBEL PRIZE IS MINE" personaly i believe a real cure is still far away, but i expect that in another 5 - 6 years from now, we will have better drugs wich will be more powerfulle and less toxic
if it isn't working, it must be windows

Offline newt

  • Member
  • Posts: 3,877
  • the one and original newt
Re: What next, what do you think?
« Reply #9 on: September 29, 2006, 12:04:43 PM »
Moffie, I just don't buy the large-scale organ failure thing, except perhaps for people with hepatitis co-infection and (combo or not-combo related) heart disease.  So few people with HIV died in the UK from organ failure that they had to lump them into the 'Other' category.  For the record, liver disease accounted for 7.5% of 450 or so total deaths/year, nearly all in gay men, most with hep C, and heart disease for about 10%.

- matt
"The object is to be a well patient, not a good patient"

Offline futureistic

  • member
  • Posts: 2
Re: What next, what do you think?
« Reply #10 on: September 29, 2006, 01:17:24 PM »
Hi everyone. Thanks for the responses, but everyone seems to be speaking of what I already know. This is why I posed the question in the first place. I already know, that the current meds are good for about 15 years before they start to breakdown the body's systems. So that is why I asked, where will they be in 5,10,15 years? I have always viewed the current meds we have now as simply buying more time. They work, but at a huge cost on our bodys. What is next and when? As for the mention of the new one a day pill, well to me, it's affective, but really a fraud in the way it is marketed and thought of. Yes, it works for a select few, but all it is, are combined meds we already have, packaged with the same potential long term failure as other meds and the same side affects making it off limits for many

When do you expect there to be one med for 99% of us, that works for as long as we take it, that won't slowly kill us? That is what I'm looking for. Doc says probably 5-10 years. He thinks we are heading that way rather quickly at the moment. What do others think? Am I simply dreaming, or is this a credible potential?

Terry

Offline Maestro

  • Member
  • Posts: 225
Re: What next, what do you think?
« Reply #11 on: September 29, 2006, 01:21:03 PM »
But in reality, how much long term testing was done on these meds?  It seems like right now we are in the middle of long term tests.  I am not doubting they work, just how can someone say what effect a drug has over 20 years if it has only been around for 10?

M

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: What next, what do you think?
« Reply #12 on: September 29, 2006, 01:24:18 PM »
I would advise you to dream of what you can make real today, instead of trying to quantify some postulation of a Medical Professional, many of whom know less about HIV than we do.  Please research "Genitic Therapy" for the latest and most possible positive outlooks.  Personally, I just don't have time.

In Love.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline ACinKC

  • Member
  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: What next, what do you think?
« Reply #13 on: September 29, 2006, 03:55:43 PM »
One tried and true fact my friend that may help you in life.  Live for today, and watch out for the buses everyone talks about having a better chance of getting hit by!!

Hiv positive or not.... we all die in the end.  
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline Sky

  • Member
  • Posts: 225
    • Myspace
Re: What next, what do you think?
« Reply #14 on: September 29, 2006, 11:32:20 PM »
I plan on this becoming something I don't put much thought into later down the road.  With the way things are now and all the advancements they make on a daily basis, HIV/AIDS will eventually become something less taboo.  I plan on having a successful career, which part one is already underway...can't begin part 2 until I've been a nurse for a couple years.  Then I plan on being a successful Anesthnetist.  I dream of living someplace amazing, having a partner, and two wonderful children.  Right now, however, the only thing I can do is live in the here and now.  No one knows what tomorrow brings...the suspense of wondering is one of the joys of life.
Poz since 2003.

Offline MitchMiller

  • Member
  • Posts: 464
Re: What next, what do you think?
« Reply #15 on: September 30, 2006, 12:18:43 AM »
Merck's integrase inhibitor is thought to be less toxic than other HIV meds and it may be the most potent HIV drug yet.  Perhaps it could be coupled with a drug like PA457, which may also prove minimally toxic and we could say goodbye to NRTI's, NNRTI's, and PI's.  However, even though both are likely to be approved within the next two years, it could be at least 3 or 4 more years after that before they become commonly prescribed as first or second line meds.   I expect at least one therapeutic vaccine within 15 years.   There's a PI in the pipeline that may not require boosting and is very potent, possibly dosed once daily.... lots of possibilities.... but the question of cost remains.  The older drugs could be priced lower and insurance co.'s could insist they be used before using the newer and, inevitably, the more expensive (and possibly safer) drugs.  I just turned 50 so I'm excluded from most clinical trials.  If I were younger, I would be watching closely the progress of all therapeutic vaccines and try to get into a trial if one looks like a really good bet.  However, you only get one chance because you'll typically be excluded from all future trials of like products if it fails... and possibly all drug trials.

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: What next, what do you think?
« Reply #16 on: September 30, 2006, 05:51:55 AM »
Hey futuristic,
You say you know that the current drugs are good for 15 years then the body starts breaking down?

Uhm WRONG


I have been on meds consistantly for 22 years, since 1984. You may want to re-research that one.

Trying to predict the future is a waist of time, in my opinion.  What is your point????
Positive since 1985

Offline aztecan

  • Member
  • Posts: 5,382
  • 29 years positive, 56 years a pain in the butt
Re: What next, what do you think?
« Reply #17 on: September 30, 2006, 09:25:13 AM »
For the present, I am still on the same regimen I was on more than 10 years ago: AZT, Crixivan and 3TC (Epivir).

After a decade on a regimen which many people have had difficulty with, I believe treatment is a very individual thing.

For the future, I believe the integrase inhibitors hold promise.

I believe I will live a normal life span  - normal for me, that is. My grandfather died at 60, my dad at 66. I want to outlive them both and push 70. But who knows, Fred Phelps and his band of loonies might take me before HIV has a chance to do the deed.

Terry, you say you are a perfectionist, etc. Where I come from, we call that being anal. I was accused of being the most anal person in the state at one time.

But I have learned it isn't tomorrow that holds promise for me, its today, because it is all I can count on.

So live while you can and, as Lisa said, let tomorrow take care of itself.


HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Life

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  • Posts: 2,388
  • Member 2005
Re: What next, what do you think?
« Reply #18 on: September 30, 2006, 10:11:07 AM »
Futuristic, first thing you got to work on is getting out of the future..  Not a good place to be living right NOW.

Just Sayin.. ;)

Offline newt

  • Member
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  • the one and original newt
Re: What next, what do you think?
« Reply #19 on: September 30, 2006, 02:10:16 PM »
Here here - matt
"The object is to be a well patient, not a good patient"

Offline allanq

  • Member
  • Posts: 689
  • still life with pills
Re: What next, what do you think?
« Reply #20 on: September 30, 2006, 03:05:05 PM »
I've been on meds since 1989.

Over the years, I've had my share of bad side effects such as nausea, diarrhea, neuropathy and lipoatrophy. I attribute the neuropathy and lipoatrophy to several years of d4T (Zerit)  and AZT. I'm currently on Fuzeon, Prezista/Norvir, Sustiva, and Emtriva.

My liver and kidney functions are normal, and based on a recent treadmill test, so is my heart. I have all my teeth and haven't had a cavity in over ten years.

It is important to monitor the effect that the drugs are having and to make changes when needed.

I do not believe that it is inevitable that HIV drugs will cause organ failure and an early death.

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
What's next, what I think...
« Reply #21 on: September 30, 2006, 10:45:03 PM »
First, on the medical front, I envision taking part in some kind of gene therapy 10 years from now.

One pill, or nine pills isn't the point. It is fine and dandy for many of us not to be treated at all for years at a time (this is an individual choice made in concert with your specialist). This allows our therapies to work better, and our bodies to have fewer side effects, all the while surviving chiefly by our own ability at immunosuppresion. Some folks need to be treated yesterday. There's no one answer.

I have high standards for myself, but I don't go beating myself against a wall for imperfections. I absolutely do not obsess on that which I cannot change, like growing older, or losing my youthful looks and then finally my youth. Meanwhile I do a lot with what I can control. Your "perfectionism" may revolve around a need to control things. Great, until you realize how little you can control. See my point? Accept more imperfection and unknown outcomes (bend), and you may become mighty strong in general (which I suspect you would like). For example I am sick as I write this, and have tried to treat myself (unsuccessfully) for a full month. I have just today given up and will call a specialist on Monday am. Meanwhile I feel good, and am doing well in other areas. So right now I am off to the gym. I may need surgery or something I won't enjoy, or possibly cannot afford. Oh well...It is not going to stop my progress all together. I am too experienced to get all bent out of shape over each setback. This last year, my life has been pretty good overall. Good luck to you, of course  8)!

 


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