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Author Topic: Why not us?  (Read 5236 times)

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Offline wolfter

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Why not us?
« on: February 04, 2012, 09:04:49 PM »
I continuously see threads where people are achieving ultimal results becoming UD and reaching high CD4 numbers.  Forgive my LTS ignorance, but why aren't we achieving those same results?  Is it the multitiude of previous drugs?  I'm truly happy for those with excellent results, but wonder why we must slowly climb to the levels of mediocrity?  Maybe I'm just irritated that I'm STILL suffering this ear issue after a week
 
Wolife
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Offline leatherman

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Re: Why not us?
« Reply #1 on: February 05, 2012, 12:15:49 AM »
since successful therapy has been shown to get even the oldest LTS to hit UD VL, I'm guessing you're really just talking about cd4 counts.

one common reason for low cd4 recovery has been shown to be related to hitting a very low cd4 nadir. (The nadir is the lowest point ever reached.) Research has shown that for many people that dropped to <50, their recovery takes a longer time, and usually never recover to very high.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Jeff G

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Re: Why not us?
« Reply #2 on: February 05, 2012, 01:10:35 AM »
Hi Greg . I was able to become undetectable rather quickly but the same can not be said for my CD4 count . It took me over 10 years to get my numbers over 350 . I only have seen numbers slightly over 500 in the last year . I think we both know by now that being on Arv's and maintaining a low normal CD4 count of 300"ish give or take a few cells is well within the range of being out of the danger zone both medically and psychologically . Its not been that long since you had some major health issues to deal with so it seems to me you are on the right track . Hang in there ! .

Offline leatherman

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Re: Why not us?
« Reply #3 on: February 05, 2012, 10:39:03 AM »
It took me over 10 years to get my numbers over 350 . I only have seen numbers slightly over 500 in the last year .
cool!
after 20 yrs of meds I still haven't hit 350 yet.
but in the last year, I'm at least finally getting closer ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline denb45

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Re: Why not us?
« Reply #4 on: February 05, 2012, 11:03:56 AM »
cool!
after 20 yrs of meds I still haven't hit 350 yet.
but in the last year, I'm at least finally getting closer ;)

I've never reached the 500 mark yet, I'm currently @ 466 and UD, but, I'm sure that will go down,

 it always does when my GI-disease & diarrhea comes back to haunt to me, usually my T-cells plummet when this happens, then they re-bound after a 10 to 14 day round a antibiotics, but that really reeks havoc on my poor old stomach ( the antibiotics that is)   :-[
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Jeff G

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Re: Why not us?
« Reply #5 on: February 05, 2012, 11:27:32 AM »
I get the results from my last round of labs this month on the 17Th . In the past 2 years I have seen 460 to 525 numbers with my CD4 count .

After all these years poz I am happy with anything above 350 and don't stress out about it . Maintaining these numbers while on ARV's and being near or at undetectable has kept me from seeing a recurrence of Kaposi Sarcoma and any other nasties , knock on wood . Don't get me wrong I would love to see numbers like Miss P has but I have no way of knowing if I ever had numbers that high before HIV so I try not to fixate on that aspect of it .   

I'm more focused on trying to manage my metabolic , lipid disorder than trying to get the highest CD4 count on the playground LOL . They will be asking at my funeral did he die of aids and they will sadly reply , no , it was fried chicken .

Offline leatherman

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Re: Why not us?
« Reply #6 on: February 05, 2012, 12:05:01 PM »
After all these years poz I am happy with anything above 350 and don't stress out about it .
I think as long as you get to a point of not-being-sick, then whatever level you reach is okay. I haven't hardly been sick, and haven't been back in the hospital in 15 yrs, so as long as my cd4s are over 250, I'm happy and don't stress about it. I mean my >300 tcells have kept me well, and having 700 more wouldn't have made me any "well-er". ;D

as I often say to the "newbies"  :-*,
"it's not how many cd4 cells you have; but how well they work"

so on the whole, wolfie, how well would you say your current count of cd4s have made you? You been working an awful lot, and also in a public job exposed to the weather and who-knows-what-germs your customers have. Have you been much sicker than say half a year ago??
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Jeff G

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Re: Why not us?
« Reply #7 on: February 05, 2012, 12:33:00 PM »
I should clarify that I know the magic steady over 200 number is a good turning point out of the danger zone but I started to feel more secure psychologically about my HIV treatment when I got back in the 300 range .

Online Miss Philicia

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Re: Why not us?
« Reply #8 on: February 05, 2012, 12:46:13 PM »
I think as long as you get to a point of not-being-sick, then whatever level you reach is okay.

I hate to rain on everyone's parade here, and wish everyone well. But that's not really the way to look at it. I think we've all read the numerous blurbs in past five years about how even with HIV controlled at undetectable levels, the lower cd4 ranges have a higher chance of developing things like cancer than higher cd4 ranges. And in the context of higher cancer rates (various types) overall in the HIV population then one's cd4 count is still of importance above and beyond "getting sick" or being in the hospital with PCP, etc.
"Iíve slept with enough men to know that Iím not gay"

Offline Jeff G

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Re: Why not us?
« Reply #9 on: February 05, 2012, 01:13:38 PM »
I hate to rain on everyone's parade here, and wish everyone well. But that's not really the way to look at it. I think we've all read the numerous blurbs in past five years about how even with HIV controlled at undetectable levels, the lower cd4 ranges have a higher chance of developing things like cancer than higher cd4 ranges. And in the context of higher cancer rates (various types) overall in the HIV population then one's cd4 count is still of importance above and beyond "getting sick" or being in the hospital with PCP, etc.

This is true and duly noted . I was just profoundly relieved when my CD4 count rose to the level where I wasn't seeing new cancer leasions . When things like this happend to me I was thankful not to have go to chemo appointments every 21 days , it was something to be grateful for and gave me hope for the first time in over 10 years of struggling . When I got into that range with my CD4 count was when things greatly improved .     

Offline denb45

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Re: Why not us?
« Reply #10 on: February 05, 2012, 01:20:52 PM »
This is true and duly noted . I was just profoundly relieved when my CD4 count rose to the level where I wasn't seeing new cancer leasions . When things like this happend to me I was thankful not to have go to chemo appointments every 21 days , it was something to be grateful for and gave me hope for the first time in over 10 years of struggling . When I got into that range with my CD4 count was when things greatly improved .     

Well I look at it this way, as long as I can keep my head above water, so to speak within the 350 to 490 range, and still remain UD, I'm not to worried about teh AIDS anymore, I'm more worried about GI-cancer, and ass cancer, and throat cancer as well as STD's more so than teh AIDS  :D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline gonzo

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Re: Why not us?
« Reply #11 on: February 05, 2012, 02:41:10 PM »
I've been undetectable since 2008, but my CD4 fluctuates btw 350-475.
Maybe has to do with my not adhering to my previous meds from hell, idk, and or being HIV+ for 22 years.
Mind you I have an orange aura about me, think it's the reyataz, but the combo works w/o many side effects so I deal with it.

gonzo
diagnosed in 1990, current Meds: Truvada/Reyataz/Norvir

Online Miss Philicia

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Re: Why not us?
« Reply #12 on: February 05, 2012, 02:55:16 PM »
btw, since my name/numbers were referenced earlier -- I'm not the greatest example of an LTS with high numbers. Years ago there was some study about various patient groupings, and my track fell in the smallest % observed, namely patients who had rising cd4 counts in spite of having a detectable viral load for years. Meaning during that period of 13 years when my meds weren't fully working, instead of my cd4 count decreasing or even staying level, they went up. My thinking is that because of this when they finally did get me on effective treatment as soon as my VL was UD that caused my cd4 count to not just go up but kind of explode. For example, on the "eve" of going on Fuzeon in '06 my last lab number was cd4 of 766 (though really 550 was more typical of that year before becoming undetectable).

My nadir my first year on treatment/diagnosis was something like 160, nothing lower, so that helps a lot. I think 95% of the people I know in Filthy that can't get their cd4 count up above 400 had nadirs of <50.
"Iíve slept with enough men to know that Iím not gay"

Offline J.R.E.

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Re: Why not us?
« Reply #13 on: February 05, 2012, 03:00:59 PM »
Well I look at it this way, as long as I can keep my head above water, so to speak within the 350 to 490 range, and still remain UD, I'm not to worried about teh AIDS anymore, I'm more worried about GI-cancer, and ass cancer, and throat cancer as well as STD's more so than teh AIDS  :D

Thats the way I look at it also.  To be completely honest,  I never expected to have my latest t-cell count of 505, and to have been undetectable, since 2004. I never believed that this would be possible, especially considering, how much I damaged my immune system, and especially the way I looked almost 9 years ago.

I didn't start on meds, until 18 years after I was infected, so I didn't have the effects of those first drugs to deal with, and those multiple dosings of AZT, that I remember so many friends on.

I gave up drinking,smoking, and drugs years ago. That's a chapter of my life that's been closed. I try to do ( in my mind) what is right. Eat right, sleep right.  No more drugs, other than the one's keeping me alive.

I try to keep physically and mentally active, and I mentioned this before,  I have this need to accomplish something on a daily basis. Keeps me busy, and keeps me out of trouble.

I am more concerned now, being 60 years of age, and dealing with age related issues   :P


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline denb45

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Re: Why not us?
« Reply #14 on: February 05, 2012, 03:13:59 PM »


My nadir my first year on treatment/diagnosis was something like 160, nothing lower, so that helps a lot. I think 95% of the people I know in Filthy that can't get their cd4 count up above 400 had nadirs of <50.

My nadirs were around <20 or <30, so that explains this lower Cd4 count I've had for many yrs. however I recall them going up from 325's to about the 490 w/ the Fuzeon in '06,

 they didn't really improve that much
but I was able to achieve UD and keep it that way, my problem is I keep getting BUG-INFECTIONS in my gut
and that knocks things way down every 3 to 4 months, it's kinda like a vicious-cycle for me  :-[

Yeah Ray, I'm worried about aging too, and all it entails, and I got 5 more yrs till 60  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Online Miss Philicia

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Re: Why not us?
« Reply #15 on: February 05, 2012, 03:20:33 PM »
My nadirs were around <20 or <30, so that explains this lower Cd4 count I've had for many yrs. however I recall them going up from 325's to about the 490 w/ the Fuzeon in '06,

 they didn't really improve that much
but I was able to achieve UD and keep it that way,

Actually going from 325 to almost 500 is a huge improvement. It's like a 65% improvement. When I went on Fuzeon I'd say on average it was increased a similar % but since I went into the switch with 550 and had 850-950 afterwards it just seems like a larger bump, when in fact as a percentage it's similar.

When I swapped out Fuzeon for Isentress two years later I then had a similar bump from the med change.
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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Re: Why not us?
« Reply #16 on: February 05, 2012, 03:34:25 PM »

When I swapped out Fuzeon for Isentress two years later I then had a similar bump from the med change.

I got almost no bump @ all from the Isentress, every-thing seem to level off and stay the same, but hey I'll take the same & UD, that's fine by me  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Theyer

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Re: Why not us?
« Reply #17 on: February 05, 2012, 07:06:45 PM »


My nadir my first year on treatment/diagnosis was something like 160, nothing lower, so that helps a lot. I think 95% of the people I know in Filthy that can't get their cd4 count up above 400 had nadirs of <50.

I have observed similar.
My first cd4 in whenever 91 was 320
During chemo,s it went into single numbers , I have no expectation off it getting above 500.
My all time high was 420. Have been lucky in keeping V/l UD.
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Joe K

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Re: Why not us?
« Reply #18 on: February 05, 2012, 08:27:35 PM »
My lowest count was 4 and it took me almost 20 years to get above 350.  In the past few years, my counts have climbed for some unknown reason and my last count was 648, which is the highest one I have ever had.  I'm not sure what is happening, but as long as the counts still climbing I have nothing to complain about.  We all have such different histories that I don't think there is anything really understood on what happens after a couple decades of being poz.

Joe

Offline leatherman

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Re: Why not us?
« Reply #19 on: February 05, 2012, 10:40:08 PM »
My lowest count was 4 and it took me almost 20 years to get above 350.
my lowest was 5 and 20 yrs later I was up to 338 before dropping back to 318  :o
(I should also mention that it took 12 yrs before I ever hit UD)

we sure do have different histories but such similar experiences  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline aztecan

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Re: Why not us?
« Reply #20 on: February 06, 2012, 10:41:21 AM »
It all boils down to when you started treatment.

If you started when your nadir was less than 200, have battled OIs and other maladies, or have a lifestyle the doesn't support health, then it could take longer to rebuild your immune system.

That isn't a judgement call, it is simple logic. When you drain the tank, it takes longer to refill.

That also is why there is the ongoing discussion of when to start. Those who start prior to dropping to low CD4 counts seem to rebound better.

That goes for the LTS crowd or the NooBs.

HUGS,

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

Offline wolfter

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Re: Why not us?
« Reply #21 on: February 07, 2012, 12:02:01 PM »
Thanks all.  Guess I was just going through a bit of frustration at things happening around me and I needed more things to stress about.  My self proclaimed pity party is over.  Having gone from single digit CD4's and VL of 6.7 million, I should be grateful to achieved the numbers I have instead of bitching that it's not better.  I guess sometimes we forego gratitude for the wrong reasons.

After a week of dealing with some sort of ear infection, I guess it was reasonable to almost think it was worsened by the HIV infection. 

Wolfie
productivity breeds content

Offline leatherman

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Re: Why not us?
« Reply #22 on: February 07, 2012, 01:02:59 PM »
After a week of dealing with some sort of ear infection, I guess it was reasonable to almost think it was worsened by the HIV infection.
that's a very rational thing to conclude though. ;)

With all the immune system damage (what is permanent and what has repaired itself?), along with the inflammation issues caused by the underlying HIV infection (since UD doesn't mean cured, your body is constantly dealing with some sort of low-level HIV infection; not to mention a sort of accelerated ageing issue caused by the underlying HIV infection); along with med-related issues, along with long-term dealing with HIV, along with some fairly recent illnesses in your recent past - it's not unreasonable at all to believe that your ear infection was exacerbated by having HIV and dealing with it for so long.

I should be grateful to achieved the numbers I have instead of bitching that it's not better.
of course, it's better; but it's just not perfect. As every year goes by, without discussing the initial hard hits your systems took from HIV/AIDS, you are dealing with long-term damage by HIV AND ageing.

From all the people I've met, I would have to say that for those of us that had AIDS, life and health are never quite the same again. (another reason early treatment may be the way to go) Everyone that I've met that was at an AIDS point has always had long-term issues with a weakened immune system, illness that drag on, and other problems. It's probably par for the course of having been aid-sy and -thankfully! - having lived so long after the AIDS.

Just think how crappy we'll all be feeling (and how much we'll be complaining LOL)
when we each celebrate living 30 years with HIV/AIDS. :o  ;D

hugs to ya, Wolfie :-*
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Jeff G

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Re: Why not us?
« Reply #23 on: February 07, 2012, 01:05:20 PM »
Aids ... hope I never get that again .

Offline wolfter

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Re: Why not us?
« Reply #24 on: February 07, 2012, 01:07:49 PM »

Just think how crappy we'll all be feeling (and how much we'll be complaining LOL)
when we each celebrate living 30 years with HIV/AIDS. :o  ;D

hugs to ya, Wolfie :-*

Christ, I'm just a few years away from that 30 year mark so I guess I'm just getting a headstart on my bitchiness.

Wolfie
productivity breeds content

Offline leatherman

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Re: Why not us?
« Reply #25 on: February 07, 2012, 01:19:25 PM »
Aids ... hope I never get that again .
quoted because this can never be said enough. ;)

not to muddle up this thread; but that's what I thought reading a thread not long ago about whether someone should be taking PCP prophylaxis. Having PCP once was quite enough so that no amount of side effects from preventative medicines would ever be too much to handle compared to actually being sick with that pneumonia - or any other pneumonia. I'd rather be itchy and puking most days from Bactrim than ever again nearly dying with PCP. AIDS sux!

I'm just a few years away from that 30 year mark
shoot! :o coming up on 27 yrs myself (about 22+ since the aids dx) maybe I should have said "40 years" or even "50 years" ;)  ;D ROFL
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline aztecan

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Re: Why not us?
« Reply #26 on: February 08, 2012, 07:26:52 PM »
Christ, I'm just a few years away from that 30 year mark so I guess I'm just getting a headstart on my bitchiness.

Wolfie

I have three years left before that "milestone."

EEP!

HUGS,

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

Offline wolfter

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Re: Why not us?
« Reply #27 on: February 08, 2012, 08:18:14 PM »
I have three years left before that "milestone."

EEP!

HUGS,

Mark

What was in the water that summer?  Vodka?   lol

Wolfie
productivity breeds content

Offline TC

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Re: Why not us?
« Reply #28 on: February 10, 2012, 09:38:15 AM »
I have lost count of the number of years that I have been +, but know that it is in excess of 15 years. I didn't get checked for a long time before they told me what I already knew.

Last year my long term partner (13.5 years) got ill and very weak and frail.  He was in hospital for some 2 months with Pancreatitis - high on morphine most of the time.  He lost so much weight and yet in the hospital he had such strength of character and dignity.  He died one month ago today.  There is no rational as to why he went so quick and yet I am still here, albeit with a CD4 that will not go above 200.  He was 33, whilst I am some what older than that.  I had always assumed that I would go a long time before him. 

I miss him so - the flat is empty with just me and the dog.

Offline idee

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Re: Why not us?
« Reply #29 on: February 11, 2012, 11:53:20 PM »
since successful therapy has been shown to get even the oldest LTS to hit UD VL, I'm guessing you're really just talking about cd4 counts.

one common reason for low cd4 recovery has been shown to be related to hitting a very low cd4 nadir. (The nadir is the lowest point ever reached.) Research has shown that for many people that dropped to <50, their recovery takes a longer time, and usually never recover to very high.
I am positive and do all I am suppose to do and have been undetectable for I lost count of the years. But I brought my hubby up from 138 pounds to 191 pounds and from an AIDs level back up to that of an HIV positive persons levels. His cell count was under two hundred but 258 when I ment him. Now his cell count is 507 and he is undetectable.
I did not fully understand all you said in your statement but I believe good care at home by a caring person is what counts as well.

Offline Ann

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Re: Why not us?
« Reply #30 on: February 12, 2012, 06:51:23 AM »
I am positive and do all I am suppose to do and have been undetectable for I lost count of the years. But I brought my hubby up from 138 pounds to 191 pounds and from an AIDs level back up to that of an HIV positive persons levels. His cell count was under two hundred but 258 when I ment him. Now his cell count is 507 and he is undetectable.
I did not fully understand all you said in your statement but I believe good care at home by a caring person is what counts as well.


Hi Idee, again, welcome to the forums. Just in case you didn't see my reply to you in a different thread, please read it now before you reply further in this thread. Thank you for your cooperation!

Hugs,
Ann
xxx
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Offline AlanBama

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Re: Why not us?
« Reply #31 on: February 13, 2012, 03:32:59 PM »
Aids ... hope I never get that again .
AMEN, brother.

I often catch myself prefacing a story by saying "this was back when I had AIDS...."

I think I have AAADTOIDS.   That stands for:
"Acquired and am damned tired of Immune Deficiency Syndrome"
« Last Edit: February 13, 2012, 03:36:44 PM by AlanBama »
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline heartforyou

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Re: Why not us?
« Reply #32 on: March 19, 2012, 07:28:02 PM »
My nadir was 7 in 1995 and I bounced back to 950 at some point. However, it now varies in the 650 / 700 range , and sometimes even in the 550 range as well. As long as they do what they are meant to do I don't worry .

love

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline harleymc

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Re: Why not us?
« Reply #33 on: March 20, 2012, 12:06:37 AM »
In 28 years of being Poz I've never achieved t/CD4 cells over the 400 mark. A close friend of mine now 30 years on from his AIDS diagnosis has 1200+ CD4s, so it's not as simple as length of time (of either infection or cART). We've also had very different health/ wellness histories, (with mine generally having been better).

I did notice some extracts from the recent CROI conference that Showed vitamin D deficiency (even while on cART) to lead to lower CD4 counts and increased mortality. As I've had a blood test recently that showed I have low vit D levels so now I treat those Ds as seriously as my ARV's.

Offline leatherman

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Re: Why not us?
« Reply #34 on: March 20, 2012, 07:46:18 AM »
I often catch myself prefacing a story by saying "this was back when I had AIDS...."
LOL boy do I say that alot!  ;D My health unexpectedly changed so much (for the better) just a couple years ago (even though my numbers only stablized but didn't improve) that I have to explain how differently I was living in OH versus my life now in SC.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Thinkahead55

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Re: Why not us?
« Reply #35 on: March 24, 2012, 10:04:35 PM »
Interesting to hear some of the examples, because I had also wondered other examples.  CD4 Llw was around 175 in 1994.  I never broke through 450 until Atripla.  That was key for me, with CD4s that topped in the 750 range and are now consistently between 600-750 range.  I am at 28 years positive.  Atripla is good stuff with few side affects and the ability to at least in my case put on another 250 CD4s.
1984 - contracted HIV (transfusion)
1991 - diagnosed HIV positive
CD4>600, VL undetectable since 2002

Offline wolfter

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Re: Why not us?
« Reply #36 on: March 28, 2012, 10:30:19 AM »
Aids ... hope I never get that again .

I've had me the AIDS 3 times.... :P  I still have a pair of my AIDS jeans as a reminder.  They are a size 27"  waist and I still had to use a belt.
productivity breeds content

 


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