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Author Topic: Do some ID specialist put you off meds?  (Read 1356 times)

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Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Do some ID specialist put you off meds?
« on: January 10, 2007, 01:05:52 PM »
Quote
Quote
Quote
I've been positive for about 9 years now and started seeing an infectious diseases specialist about 1 year ago.  She said my blood count was good and took me off the medications I had been taking for 8 years.  My viral load slowly went up as expected until my most recent test.  4 months ago my CD4 was 673 and the viral load was 14,000.  My current test came out to CD4 747 and a viral load of 4,000.  I don't always take care of my health has good as I should.  I'm happy with the results, but I'm also confused on what could possibly cause the viral load to go down with no medication?
[/glow]

I read this somewhere in the forum where a doctor told someone who is was taking meds for 8 years to stop taking them and is doing well. Is this something ID doctors are trying now? Or is it because of other reasons?
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline Boo Radley

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Re: Do some ID specialist put you off meds?
« Reply #1 on: January 10, 2007, 01:22:04 PM »
I think it depends on the doctor and the patient.  Structured Treatment Interruptions (STI) were proposed several years ago as more people on HAART maintained high CD4 counts and undetectable or very low viral loads.  I thought the results of research on STIs were ambiguous at best but my foggy memory may be wrong.

Some folks may stop HAART because of adherence or side-effect issues and sometimes they will wait for a while to see how their individual bodies react to the cessation of treatment.   Some people are finding that their bodies are apparently maintaining CD4s and low vls and will stay off meds until a negative change occurs.  Other folks will find their viral loads getting high rather quickly with an ongoing reduction of CD4 counts again.

Someone else can speak more accurately about this subject but I always hate the look of a question without a response.  My own ignorance never stops me from offering an opinion.

Boo
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write 2007 Sweet Old Boo, Inc.

Offline Ihavehope

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  • Posts: 1,366
  • Yes, I'm a cry baby, AND WHAT?
Re: Do some ID specialist put you off meds?
« Reply #2 on: January 10, 2007, 01:25:30 PM »
Thanks Boo.

In the begining of trying to learn about treatment options I did hear that most people on Drug Holidays didn't do so well therefore making it quite inefective but only believed it was done in clinical trials. I guess it is very harmful for those individuals with high CD4 counts and undetectable numbers to risk a little.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline RapidRod

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  • Posts: 15,288
Re: Do some ID specialist put you off meds?
« Reply #3 on: January 10, 2007, 03:11:07 PM »
There are articles on this website of studies that were done which were called Holliday Breaks and it was found that is was not a good idea to go on breaks. I'm not sure were to tell you to locate it. I'm sure some of the other people here can tell you were to read about the study.

Offline Eldon

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  • Posts: 2,664
Re: Do some ID specialist put you off meds?
« Reply #4 on: January 10, 2007, 06:42:06 PM »


Hey Hope,

Every medical situation is different. It depends on the Doctor's perception of what is or is not needed.






"What can I notice right now that makes me smile?"

Offline koi1

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  • Posts: 713
Re: Do some ID specialist put you off meds?
« Reply #5 on: January 10, 2007, 06:58:15 PM »
Most of the info I have heard, strongly goes against drug holidays because of drug resistance. Some people have reported that though they may feel well for some time without meds and their numbers remain stable, the virus often comes back with a vengance. If people are handling their regimen without too many side effects and their quality of life is good, going on a drug holiday may be a bad idea. Unless you are about to lose your liver due to drug toxicity, or other fatal conditions a drug holiday may complicate future treatment options. My doctors don't recommend it.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline megasept

  • Member
  • Posts: 478
  • Steven here...
Drug Holidays do not equal STIs
« Reply #6 on: January 10, 2007, 07:29:01 PM »


I read this somewhere in the forum where a doctor told someone who is was taking meds for 8 years to stop taking them and is doing well. Is this something ID doctors are trying now? Or is it because of other reasons?

Boo has begun a cautious answer. He is being responsible by not giving an opinion where he still has insufficient information to form one confidently. I know a little more, and am interested because I AM ONE OF THE PATIENTS PUT ON STI. I was also alarmed when I read the recent conclusions of a study on STIs that concluding negatively on the issue. I will get to that point last. I am one of many hiv patients taken off treatment after years of successful therapy (it was not because of failure, or side effects, serious or mild).

The history of the STIs started when patients who went on "drug holidays", mostly out of irresponsibility, didn't all do badly. In fact, some fared pretty well. Clinicians then set up various trials to see if this is something that could be done, or should be condemned. I was very hostile to the folks who went on "holiday." After a year or more following this debate and investigations, my own MD asked me to go on not a holiday (days or weeks) but a long-term STI. It was hard mentally to make a "180", but after four days of additional research I informed her I was stopping as she had suggested. I still have many questions about STIs, but I still cautiously advocate my own STI, and six years without meds is a great break for my organs and a shockingly long time to be doing pretty well.

The recent study which my specialist thinks is flawed, got a a lot of play; it's conclusion was STIs are dangerous and not effective. My STI is now 6 years. My VL is growing and my t-cells have declined slightly. I expect, but won't garuantee that I'll be back on anti-virals before 2008. If I thought my STI was mistaken, I would certainly have gone back on therapy a few months back. My STI and my history of non-treatment prior to therapy have made me question whether I ever needed to be on meds. I don't have an answer to that one. I have done pretty well both ways.

The (good) reasons for an STI are: to let your own body use its own immunity to fight hiv, spare your organs like heart, liver, pancreas, of the bad effects of extended treatment, and wait it out as long as possible for better drugs or other treatments (ie genetic). There are "bad" reasons, meaning if a patient does not respond to therapy, and I suppose that includes "salvage therapy." "Hit it hard and hit it early" seems to have been wrong. I rejected it as a choice when it was the mantra from the CDC. There are many options and how we lump patients or choices together might do a disservice to individuals trying to figure out what might be best for them.

There are few people on this site who agree with me on this issue, and I remain open-minded. I am sure I reject the major conclusions of the recent study that supposedly "shut the book" on STI advocacy. It did not. Taking people off therapy for days and weeks and then resuming therapy is nothing like a long term STI; in fact, it sounds like a terrible idea, the worst of both approaches. A lousy study hardly bolsters my case. It is simply irrelevant. That's my conclusion. FYI: I was not treated for five yeas, treated (3tc, d4t) for exactly five years and now off anti-virals for six. I am a living guinnea pig---but aren't we all? I hope this helps.  8) -megasept
« Last Edit: January 10, 2007, 09:03:33 PM by megasept »

Offline jzgirl

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  • Posts: 1
Re: Do some ID specialist put you off meds?
« Reply #7 on: January 10, 2007, 08:49:18 PM »
Hi...first time posting...

I tested positve in 2000 and the only time I was on meds was during my pregnancy. I was taken off meds about 2 months after givng birth.  My dr. felt my labs were good and treatment could wait.  It was hard at first but 6 years later I'm still off.  Seems my immune system is fighting on it's own for the time being.  If there's any dramatic change in my labs. the dr's will decide a course of action.  I'm okay with this.

Offline koi1

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  • Posts: 713
Re: Do some ID specialist put you off meds?
« Reply #8 on: January 10, 2007, 11:24:03 PM »
I understand that one should be cautious.  Each person's body is different. I did mention in my post that if the meds were harming a person's organs that was another question. Speaking for me, not being on meds destroyed my digestive system which has caused me many complications. With what I know now, I personally would not wait till I get below 350 tcells to get on meds. You are one of the lucky ones that does well off of meds. There are also long term non progressors, many variables, and I know not everyone can fit nicely into a bell curve. However, from all the research I have read, I have seen over and over again that drug resistance is very real, and any prolonged break from meds that were doing their job, can lead to drug resistance which may in turn make the virus resistant to a whole class or classes of drugs at a time. I personally would not want to take that chance. My ID team is at Kaiser, Los Angeles, which right now is one of the only if not the only HMOs' doing research on HIV/AIDS. I think if drug holidays were a realistic treatment option, insurance companies would be jumping at the chance since they would save billions of dollars worldwide.  Last time I checked, my meds are about 1K to be on per month.

ALL POSTS HERE ARE OPINIONS

rob
« Last Edit: January 10, 2007, 11:39:27 PM by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline aztecan

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  • Posts: 5,401
  • 29 years positive, 57 years a pain in the butt
Re: Do some ID specialist put you off meds?
« Reply #9 on: January 11, 2007, 09:22:30 AM »
There are several people here who have done well on extended treatment interruptions.

If I remember correctly, part of the issue wasn't just taking a break from meds, but where you were when you started meds.

Those who were in relatively good shape, no OIs, CD4s of 350 or greater, apparently have done better than those whose immune systems were severely compromiesed.

If a person had a low CD4 and high viral load prior to starting meds, chances were the virus would respond more virulently during an STI.

That's what I remember reading anyway.

in reference to "hit hard, hit early," I truly believe beginning meds prior to being seriously immune compromised is a better idea than waiting until there is an AIDS diagnosis.

Back when I started, the rule of thumb was to start meds when CD4s dropped below 500. I started at 430 or 440. (It's hard to remember without digging out the files.)

One of my docs discussed an STI with me. I thought about it and declined. I don't regret that. I think it was the right choice for me.

There are no hard and fast rules. There are simply to many variables.

HUGS,

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

 


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