five years poz, no meds yet--is this normal? your experience?

[CalvinC]

Well, okay, I know nothing is "normal" when it comes to hiv but....

I tested poz about five years ago and was likely infected in the six months prior to that. No obvious seroconversion. CD4 count has always been stable, in the 600-700 ranges, with VL initially about 1,000 then hovering in the 7-15,000 range in the past four years. Health otherwise perfect.

I know that hiv progresses faster in some than others. My GP, who is great, told me in my initial meetings that the hiv could progress quickly, or might not; but it would be likely in any case that, if it were "slow" that I might likely not have to go on meds until around my 8th year or so. Of course, he said it would depend on any number of things, and one cannot really predict things; one's numbers might remain forever good, he added. He was speaking from general observations he's made from being involved with hiv patients since the outset. My specialist, who is one of the tops in the field here in Canada, told me, when I recently asked her about "to go on or not to go on" said that indicators, in my case, did not suggest a need to, but that I could if I ardently wished to. But it was her opinion to stay the course for now.

So, I'm thinking about what some of you here have experienced in terms of your own progression vis a vis my experience.

Andrew

[elf]

Even with numbers this good, there is subclinical inflammation going on,
that's why even in this case, many doctors would recommend HAART (medication)
and maybe a low dose aspirin.

Read here: http://img.thebody.com/sfaf/2010/beta_2010_winspr_inflammation.pdf

[tednlou2]

There is definitely a divide in the medical community about when to start meds.  Many will say any HIV replication is bad and why would you not treat it.  Others say there is no need to treat over CD4 500.  I recently asked an online doc about this issue.  You can read his answer below.  I was surprised he said starting meds with a CD4 over 500 probably only has a modest benefit.  See, everyone says different things.  If I had asked that question to Dr. Gallant at John Hopkins, he would have said the opposite, I'm sure.  By the way, my numbers are very similar to yours. 

It really is left to your own decision and how you're feeling.  I have energy issues, but I think a lot of that is depression.  I've noticed the depression has gotten much worse--where I just don't feel like the old me.  I don't enjoy doing the same things I use to do.  I'm actually gaining weight.  I'm obviously using food now as a coping mechanism or something.  Plus, not being active.  If I were getting sick a lot or had strange infections/rashes, I'd probably go ahead and take the plunge.  Having said that, I do worry about letting HIV go untreated, even with good/decent numbers, for too long.  There are people who have been poz for 30 years without meds, but they are rare.  I'm certain my infection goes back to August 2001.  I've been sick once with bacterial pneumonia.  I ignored the warning signs for too long and let it get really bad.  If it were to happen again, I think I would recognize the signs and seek treatment sooner, so it wouldn't be a big deal.  Knock wood, I rarely get sick.  Now that I said that, I'm sure I'll get sick.  I really do think I would probably feel better, if I started meds.  I've heard many here say they never felt better and don't know why they waited.  I have sometimes wished my numbers would go down, so the decision would be easier.  With them being over 500 and a low vl, I can't seem to make a decision. 

http://www.thebody.com/Forums/AIDS/SideEffects/Q213812.html

[Ann]

I seroconverted in the spring of '97 and was diagnosed on February 22, 2001. I'm still not on meds and I'm doing fine.

2001-02-22 VL 80,700 CD4 490
2001-03-30 VL 21,000 CD4 997 32%
2001-05-29 VL 43,700 CD4 440
2001-07-10 VL 43,700 CD4 350
2001-08-07 VL 25,000 CD4 480
2001-08-21 VL 00,000 CD4 660
2001-10-08 VL 91,100 CD4 470
2001-12-04 VL 96,200 CD4 620

2002-02-04 VL 21,000 CD4 620
2002-04-11 VL 00,000 CD4 530 26% Started hep C treatment
2002-07-10 VL 00,000 CD4 460 27%
2002-09-11 VL 00,000 CD4 530 26%
2002-10-09 VL 30,300 CD4 322 31%

2003-01-08 VL 17,800 CD4 363 23%
2003-04-02 VL 06,940 CD4 410 Ended hep C treatment
2003-07-07 VL 40,700 CD4 474

2004-01-28 VL 29,900 CD4 518 28%
2004-03-?? VL 07,370 CD4 281 23% had shingles
2004-06-01 VL 07,740 CD4 460 27%
2004-08-30 VL 13,000 CD4 568 26%
2004-11-23 VL 11,000 CD4 645 28%

2005-02-15 VL 03,350 CD4 532 27%
2005-03-29 VL 00,000 CD4 715 28%
2005-06-21 VL 06,580 CD4 660 26%
2005-08-02 VL 00,000 CD4 732 28%
2005-10-12 VL 00,000 CD4 320 25% minor op previous day
2005-11-08 VL 10,200 CD4 786 28%

2006-01-31 VL 12,500 CD4 787 32%
2006-04-25 VL 11,800 CD4 628 29%
2006-07-18 VL 18,400 CD4 550 26%
2006-10-17 VL 14,500 CD4 447 26%

2007-01-16 VL 12,600 CD4 567 26%
2007-04-10 VL 07,610 CD4 441 26%
2007-07-03 VL 05,630 CD4 411 25%
2007-09-25 VL 16,700 CD4 525 27%
2007-12-18 VL 12,900 CD4 299 22%

2008-02-05 VL 13,700 CD4 489 19%
2008-04-29 VL 10,700 CD4 433 26%
2008-07-22 VL 10,200 CD4 314 27%
2008-11-04 VL 03,050 CD4 470 29%

2009-01-27 VL 06,700 CD4 459 25%
2009-04-21 VL 07,390 CD4 399 25%
2009-07-21 VL 35,000 CD4 561 32% New VL assay used
2009-11-03 VL 39,900 CD4 576 26%

2010-02-09 VL 00,000 CD4 392 29%
2010-05-18 VL 20,500 CD4 368 26%

Um, I see I didn't update my numbers file the last time I got results - but I do know my CD4s were back up over 500 - I just can't find the bit of paper where it's written down. My doctor and I were discussing me going on meds in the fall of 2010, but that idea got shelved when my CD4s went back up.

This whole hiv thing is a crap-shoot no matter how you look at it. I defy you to find a single person who can tell you - with absolute certainty - what is the best way to approach life with hiv.

We have people in this forum who were guinea pigs were the first meds are concerned - they've lived to tell the story, but they suffer from the long-term side-effects of the very things that have kept them alive.

We also have people in this forum who started meds pretty much straight away, when their numbers were still really good. Most of them - so far, so good - are doing well.

Today the meds are different, but we're in the early days with many of them still. Who knows what 20 or more years of being on Isentress, for example, is actually going to do to a person. Nobody, that's who.

Calvin, the bottom line here is that you need to do your homework and decide what is best for you. On one hand, you can look at it as you're doing well, why throw chemicals into the mix. On the other hand, you can decide that you don't want the ongoing inflammatory response that hiv forces your body into. Only you can decide.

[emeraldize]

Hey Calvin,

I'm with Ann. Get the facts. Confer with your doc. You decide.
You're seeking other pozitive input. Good idea. Tons of it here.

I acquired and was diagnosed in 2003. VL never went beyond slightly over 2,000, percentages were always good, but over time CD slowly drifted down from the high 500's into the high 300's.

My doc knew I wanted to stay med-free for as long as possible. Never pushed, but in early 2010, gave me a considerate nudge. Decided to yield because my doc is a brainiac with a lot of experience. Had a false start overlapped by 24-hour bug in June. Made the decision to try it again in Oct. 2010 and have been on since. I chose Isenetress/Truvada.

VL undetectable (which happened almost instantly) and CD are starting to creep back up again.

To be honest with you, if I were given the opportunity for a do-over, based on what I've learned and experienced, I would start earlier.

Em

[J.R.E.]

I know that hiv progresses faster in some than others. My GP, who is great, told me in my initial meetings that the hiv could progress quickly, or might not;
So, I'm thinking about what some of you here have experienced in terms of your own progression vis a vis my experience.

Andrew

Hey Andrew,

I was infected in July of 1985, and tested positive in October of 1985.  I don't remember seroconversion at all. I didn't start meds until October of 2003.  I went 18 years without meds, but also made some bad decisions. ( Denial is Hell).    Prior to October of 2003 with a t-cell count of 16, the last viral load and t-cell count I had was in 1999.  At that time, t-cells were in the 900 range, and viral load about the same.

 I did great( health wise) for many years, and never had any issues.

Obviously, I should have started meds sooner, and prevented, some serious issues.

So, from 1999 until 2003, t-cells dropped dramatically from 900 range to 16.


The main thing is, keep yourself monitored, and don't fall into a false sense that everything will always be OK .  Remember these years without meds, because once you start on meds, those years without meds will soon be forgotten.



Take care of yourself---Ray

[Assurbanipal]

This is one of those areas where there is some potential long term benefit and some potential long term risk.  Current expert opinion is that they are both likely small, but unknowable.  The only easy decision is the one you have already made -- to hire a professional and to monitor your condition.

So it really boils down to what your decision style is and how you become comfortable with decisions that you make about long term opportunities and risks.  How do you make decisions about other long term items where there are plusses and minuses?  If you look back at other times when you took a long term risk, are there decisions that you remain comfortable with the process you used, regardless of whether or not the risk evolved?  What was that process?

[CalvinC]

Hi all. Thanks for all the feedback. The inflammation thing was new to me.

Coincidentally, I've got varying degrees of osteoarthritis in most of my fingers. But that is, I think, related to the fact that I work out with heavy weights and that it runs in the family.

I'm part of a study right now, taking a twice-daily anti-herpes med. (I've never been symptomatic, but apparently test positive for herpes.) They are trying to see if hiv will at all be influenced by the meds, as herpes, the VLs of which are slightly higher in hiv poz people, is also a virus. (I could have this logic slightly wrong.) Also, I've been on anti-OCD meds for 15 years (zero side effects), so I know what a pill regimen is like.

For some reason, I think that going on meds will "make me" an "hiv person." Stupid thinking eh? I am an hiv person! But I'm lucky that I don't have to think about it, and it doesn't get me down or anything, really (except when thinking of intimacy issues and dating etc). Going on a regimen I feel would cement that fact for me. Or I don't know.....I can't be sure. But I will see my specialist and my GP soon, so I'll talk it over with them again.

And, by the way.....

The only easy decision is the one you have already made -- to hire a professional and to monitor your condition.

In Canada, we don't hire professionals. It's all free. 

[newt]

For some reason, I think that going on meds will "make me" an "hiv person." Stupid thinking eh?

This is not a stupid idea, it's a defining moment.

HIV has a different pace in different people.

- About 20% of people may need treatment 1-2 years after getting HIV.
- 50% will start treatment after 2-10 years, at an average of five years.
- About 25% can stay well for over 10 years without using treatment.
- 2-3% of people can go for 15-20 years and still have a strong immune system without treatment.
- A few just beat the virus on their own, but nonetheless they do.

- matt

[tednlou2]

There is definitely a divide in the medical community about when to start meds.  Many will say any HIV replication is bad and why would you not treat it.  Others say there is no need to treat over CD4 500.  I recently asked an online doc about this issue.  You can read his answer below.  I was surprised he said starting meds with a CD4 over 500 probably only has a modest benefit.  See, everyone says different things.  If I had asked that question to Dr. Gallant at John Hopkins, he would have said the opposite, I'm sure.  By the way, my numbers are very similar to yours.  

http://www.thebody.com/Forums/AIDS/SideEffects/Q213812.html

As luck would have it, Dr. Gallant just made a comment on starting meds.  I'm very surprised by his saying, "That being said, the question of when to start is hardly an exact science, and there's generally little harm--and possibly some benefit--in starting too soon. Starting too late is what we try to avoid."  

Am I reading this right that Dr. Gallant has the same point of view as the previous doc I quoted--that there is probably only modest benefit from starting above CD4 500??  I'm confused, because I know Dr. Gallant has always said he believes anyone with a viral load should be on meds.  He doesn't clairfy what "too soon" means when saying this.  If I'm understanding both these docs correctly, they are both saying there is just a modest benefit in starting meds above the current guidelines.  This goes against what many, including Gallant, have said about all the damage viral replication is doing even with CD4s over 500, 600, and 700.  

http://www.hopkins-hivguide.org/q_a/patient/recent_questions/cd4_count.html?contentInstanceId=545623&siteId=7151

Modified to shorten my original post for clarity 

[elf]

Viral load > 200 is what is doing damage even with high CD4.
Imagine a wood table that is being attacked by termites.

Apparently, even with VL<50 there is still ongoing sub-clinical inflammation (which is related
to ''aging'' or ''rapid aging'' in HIV+ people).

[aztecan]

I went 11 years without meds, which was nice cause there weren't many to be had.

I started when my CD4s dropped to the mid 400s.

I have now been on meds for 15 years, and undetectable for 14 years, 8 months, give or take.

As Newt pointed out, it varies from person to person. It is the luck of the draw.

hUGS,

Mark

[Malinka]

Hi there. I went 6 years without meds.. and the during the first four I wasn't taking very good care of myself. Ironically, now that I have started to really care about my health..... my cd4 drops to 340 (( I'm supposed to start meds on monday.  Good luck with everything and anything is possible

[karry]

Hi
I was diagnosed four years and a month ago and since then my viral load had been under 200 and my last cd4 count was 830 (my highest since I was diagnosed). I have never been on meds. So I can say there are some people with same experience as you.

However, I am preparing myself for the time when I may have to go on meds, because I know that day will come someday, although I do my best to keep my numbers good. I keep a positive attitude, while being ever grateful for the progress that has been made in finding treatment for PLWHIV/AIDS, especially the people who participated in trials for the treatments we benefit from today; and the people to whom I owe the hope that even when my numbers fall I can turn to treatment.