POZ Community Forums
Main Forums => Living With HIV => Topic started by: drewm on December 12, 2013, 02:35:14 pm
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Hey guys and gals...
Three years since I went undetectable. My CD4's have gone from 330 to a current lab of 282. Any suggestions on how I might be able to get this up any higher. % is 19% up from 13% last August.
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No. You started with a low nadir cd4 count of 8. I don't believe there are any proven therapies known to increase cd4 counts beyond maintaining an undetectable viral load with HAART.
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Close your eyes, click your ruby slippers together three times and say, in a loud and commanding voice: "GROW YOU BASTARD CD4s, GROW!!!" ;)
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Close your eyes, click your ruby slippers together three times and say, in a loud and commanding voice: "GROW YOU BASTARD CD4s, GROW!!!" ;)
I'm picturing you on a rainy day, out on THE ROCK doing this, with your rain slicker on of course..... as you might imagine, I'm laughing too!! ;D
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I'm picturing you on a rainy day, out on THE ROCK doing this, with your rain slicker on of course..... as you might imagine, I'm laughing too!! ;D
Hey! It works! I had over 1000 at last count! ;D
Disclaimer - I don't wear ruby slippers, I wear purple Doc Martins. :)
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I had over 1000 at last count! ;D
size queen
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size queen
Can't deny it!
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I've boosted my cd4 count up to 90.
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Close your eyes, click your ruby slippers together three times and say, in a loud and commanding voice: "GROW YOU BASTARD CD4s, GROW!!!" ;)
ROFLMAO! :o
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The times I really bumped my cd4s significantly were during major med regimen changes.
Changing to Fuzeon and Prezista added ~400 cd4s (truth) and changing to Isentress 1.5 years later added another ~400 more (in the first year or so) and ~700 over six years of being on that. Of course, I can't prove cause and effect so whatevs. I'm sure the real cause was getting my viral load undetectable partially, but by 2006 there was a known synergy with treatment experienced patients going on Fuzeon + Prezista simultaneously, at least by experienced clinicians.
There were some studies done five years ago or so that showed adding Fuzeon (short term for 24 weeks) on top of a standard HAART regimen (protease inhibitor-based) for late presenters with low cd4 counts provided better immunological recovery:
http://www.natap.org/2009/ICCAC/ICCAC_07.htm
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The times I really bumped my cd4s significantly were during major med regimen changes.
Changing to Fuzeon and Prezista added ~400 cd4s (truth) and changing to Isentress 1.5 years later added another ~400 more (in the first year or so) and ~700 over six years of being on that. Of course, I can't prove cause and effect so whatevs. I'm sure the real cause was getting my viral load undetectable partially, but by 2006 there was a known synergy with treatment experienced patients going on Fuzeon + Prezista simultaneously, at least by experienced clinicians.
There were some studies done five years ago or so that showed adding Fuzeon (short term for 24 weeks) on top of a standard HAART regimen (protease inhibitor-based) for late presenters with low cd4 counts provided better immunological recovery:
http://www.natap.org/2009/ICCAC/ICCAC_07.htm
THANKS!
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THANKS!
Drew, before you get too excited, you do realise, don't you, that Fuzeon (http://www.aidsmeds.com/archive/Fuzeon_1628.shtml) has to be injected subcutaneously twice-a-day? A lot of people were having trouble with the injecting sites too. Just warning you.....
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Drew, before you get too excited, you do realise, don't you, that Fuzeon (http://www.aidsmeds.com/archive/Fuzeon_1628.shtml) has to be injected subcutaneously twice-a-day? A lot of people were having trouble with the injecting sites too. Just warning you.....
Thanks Ann and yes, I just finished reading up on it. Not sure I am one for any more needles. Always appreciate the input though. :)
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Thanks Ann and yes, I just finished reading up on it. Not sure I am one for any more needles. Always appreciate the input though. :)
Stick with the ruby slippers, mate. ;)
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% is 19% up from 13% last August.
Which is a nice INCREASE in my book
Factors positively associated with higher CD4 counts in general population:
- smoker status
- female status
- overweight status
so your options are open ;-)
Congrats on the % increase Eric
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I suppose the question one should ask is if it has been fairly well documented that having +500 cd4 count offers better long-term outcomes (HIV-relatedcancer incidence, life expectancy, etc.) is it better to commit to an 18-24 month course of injecting Fuzeon or accept low cd4 counts?
I realize it's quite difficult to project cd4 progression in a patient. While there are many that will slowly obtain +500 from single-digit late presentation diagnosis, many are so damaged that they never do. I personally know more than a handful that have never risen above 300 cd4 count after more than two decades of treatment. With that in mind I don't think it is unreasonable to offer what I presented as a realistic option to certain patients.
Yes, I can attest to twice daily injections not being bundles of joy, but it's no harder than what many diabetics deal with. And unlike diabetics, the HIV patient is such a position at least has a time delineated factor to look forward to -- they know they will halt doing the injections in a reasonable time. The majority of Fuzeon users only experience mild to moderate site injections if they administer the drug in the recommended body areas.
Of course, what I am recommending will never be done because it's a bridge to far from the one-pill-a-day fetish even if it promises better clinical results.
ps: to our newer members on the forum I took injectable Fuzeon for a period of 1.5 years so I know what it's like.
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With that in mind I don't think it is unreasonable to offer what I presented as a realistic option to certain patients.
I agree - for certain patients. For example, someone who is struggling to get over 200. It's certainly not for the faint-hearted. I know I'd really struggle with twice-daily self-injections.
Hell, I struggled with once-weekly self-injections when I was on Interferon. I'm a wimp when it comes to needles, unless someone else is doing the sticking. That I can cope with, but for some reason I just can't do it myself. I had to give my ex-partner's dog daily insulin shots a few years ago and I struggled with that too. Go figure.
If someone really needs that CD4 boost and they can cope with self-injecting, more power to them, and good luck. They're certainly braver than I am!
I always admired you for sticking with Fuzeon for so long - thank goodness it was available - and I was relieved for you when Isentress came out. I think you were on Fuzeon around the same time I was on Interferon - 2002/2003? Or was it after?
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Which is a nice INCREASE in my book
Factors positively associated with higher CD4 counts in general population:
- smoker status
- female status
- overweight status
so your options are open ;-)
Congrats on the % increase Eric
Thanks Eric! I don't smoke and I am not overweight. Not female...although sometimes wish I was ;)
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I suppose the question one should ask is if it has been fairly well documented that having +500 cd4 count offers better long-term outcomes (HIV-relatedcancer incidence, life expectancy, etc.) is it better to commit to an 18-24 month course of injecting Fuzeon or accept low cd4 counts?
I realize it's quite difficult to project cd4 progression in a patient. While there are many that will slowly obtain +500 from single-digit late presentation diagnosis, many are so damaged that they never do. I personally know more than a handful that have never risen above 300 cd4 count after more than two decades of treatment. With that in mind I don't think it is unreasonable to offer what I presented as a realistic option to certain patients.
Yes, I can attest to twice daily injections not being bundles of joy, but it's no harder than what many diabetics deal with. And unlike diabetics, the HIV patient is such a position at least has a time delineated factor to look forward to -- they know they will halt doing the injections in a reasonable time. The majority of Fuzeon users only experience mild to moderate site injections if they administer the drug in the recommended body areas.
Of course, what I am recommending will never be done because it's a bridge to far from the one-pill-a-day fetish even if it promises better clinical results.
ps: to our newer members on the forum I took injectable Fuzeon for a period of 1.5 years so I know what it's like.
Miss P I am storing your information in my brain. It's not something I have ruled out 100% but I would consider it after discussion with my ID doc. I am not a fan of needles...OK...I am a pussy when it comes to needles but fighting this disease is Job #1. :D
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Miss P I am storing your information in my brain. It's not something I have ruled out 100% but I would consider it after discussion with my ID doc. I am not a fan of needles...OK...I am a pussy when it comes to needles but fighting this disease is Job #1. :D
Oh, I get it -- I was not a big fan of having to do it. Actually I was in a study that used a needless injector system called the Biojector 2000 (http://www.bioject.com/products/b2000-info) but after the study the FDA declined to approve it for Fuzeon because it still caused injection sight reactions even without needles. I really only had issues with it the last six months.
One great thing about Fuzeon is that since it doesn't touch your gastrointestinal tract you don't get diarrhea from it, or farting, or bloating, etc.
Also, Fuzeon is incredibly expensive -- by far the most expensive HIV medication at ~$25,000 so even if your doctor agreed to doing such a treatment your insurance might possibly balk unless you could prove it medically necessary, meaning it was your last treatment option as I think it's still only formally FDA approved for salvage treatment, regardless of the study link I provided. But you'll never know until your insurance were to decline it.
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FWIW, I was in your same situation for 10 years. Then suddenly my CD4 jump to the 500's and continues to remain in the 500-600 range.
I didn't change meds, no lifestyle changes, nothing different, just the numbers changed. Go figure.
I remember during that time I did some research to see if something could help. There were some studies being done for "immune non-responders" but I can't find them now. You might want to do some Googling along those lines. I think the research involved therapeutic vaccines or gene therapy I can't remember.
Best of luck.
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He Drew,
This is my concern, too. My stats are very similar to yours. But I had a long history of ample CD4+ till my immune system crashed.
While I had to start meds a year ago, and am UD, I was hoping for a CD4+ rebound, but it hasn't happened yet.
I tried selenium. Don't think it has had an effect. Would like other advice. But perhaps the best we can do is hope and wait and see.
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FWIW, I was in your same situation for 10 years. Then suddenly my CD4 jump to the 500's and continues to remain in the 500-600 range.
I didn't change meds, no lifestyle changes, nothing different, just the numbers changed. Go figure.
I remember during that time I did some research to see if something could help. There were some studies being done for "immune non-responders" but I can't find them now. You might want to do some Googling along those lines. I think the research involved therapeutic vaccines or gene therapy I can't remember.
Best of luck.
Thanks! Will google ;)
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Can't deny it!
In good company ;)
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Fisher, 359 cd4 and above is within "normal range" per laboratory testing. Your numbers are not bad. You've only had two readings below that (one by only 8) and it's not that clinically significant as that means only really one reading below the threshold. We're referring to readings covering a period of years here.
Additionally your % numbers have increased and that generally indicates that the real cd4 numbers will eventually increase.
I think some of you look at other people's lab numbers and have unrealistic expectations on this subject.
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Fisher, 359 cd4 and above is within "normal range" per laboratory testing. Your numbers are not bad. You've only had two readings below that (one by only 8) and it's not that clinically significant as that means only really one reading below the threshold. We're referring to readings covering a period of years here.
Additionally your % numbers have increased and that generally indicates that the real cd4 numbers will eventually increase.
I think some of you look at other people's lab numbers and have unrealistic expectations on this subject.
Miss P you are correct in my case. I have been looking at other folks labs so I asked my ID doc if I could expect a higher CD4 count higher than the 280-330 range at anytime and she said "probably not" and then explained why she felt that way. The fact that my % jumped pleased me to no end because it had been at 13% for a couple of years so any upward movement pleases me.
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Ms. P.
I love your new avatar!
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Ms. P.
I love your new avatar!
His name is Erasmo and he lacks body hair. So sorry!
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His name is Erasmo and he lacks body hair. So sorry!
I have more than enough to make up for his shortfall...
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I have more than enough to make up for his shortfall...
But do you have more than I do? I'm the hairiest male in my family.
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Which is a nice INCREASE in my book
Factors positively associated with higher CD4 counts in general population:
- smoker status
- female status
- overweight status
so your options are open ;-)
Congrats on the % increase Eric
So I have to eat a lot of chocolate cake, start smoking parliament lights, and get a sex change? I'll break 1000 in no time!
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Whatever you do, make sure you don't take Antabuse (virus reservoir activating substance),
it made my CD4 go down from 1300 to 630 (without affecting the CD4%).
(The recovery is slow, I'm @750 now,
although >1000 was the normal result for me before my experiment).
Looking back, selenium supplementation (400-800 mg) and melatonin (15 mg)
did great on my CD4 numbers.
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... (virus reservoir activating substance),
...
Aka Kick & Kill (conceptual) strategy...
In Kick & Kill, there is ... KILL.
The idea is to help non signaling infected cell to signal themselves (and get the immune system to kill them, if not to induce suicide)
Since you numbers were originally on the 'high' side, how were you intending to evaluate the effect of K&K ?
Cheers
Eric