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Author Topic: Lack of Luck (and the power of antiretrovirals)  (Read 5182 times)

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Offline Schnauzer

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  • Posts: 44
Lack of Luck (and the power of antiretrovirals)
« on: November 02, 2013, 02:46:35 pm »
I don't want to hijack Oksikoko's thread, so I'll start my own.  I've had exactly the opposite test results from his and I'm more than a little worried (needlessly I hope).  After nearly five years on Atripla I switched to Stribild.  I've had no side effects at all. The fuzzy-brain syndrome and the Alice-in-Wonderland dreams (talking dogs, fornicating animals morphing into humans, etc.) often associated with Atripla are a thing of the past.

Unfortunately, my second set of test results since starting Stribild came back yesterday and while my dr. seems unconcerned, I am.  Here they are - July 15, 2013/Nov 1, 2013: CD4 - 567/420; CD4% - 19%/17.5%; GFR - 102/77; WBC - 10.5/11.3; VL - ud/ud.

These results are the worst ones I've had since starting on HAART.  Like I said, my primary care/ID doctor hasn't mentioned anything, but he seems a bit lackadaisical so it wouldn't surprise me at all if he hasn't even looked at the results.

And just to add a little more detail to the picture, I exercise vigorously six days a week (treadmill, yoga, pilates, rowing), eat very well (I'm a chef and cook almost everything I eat, e.g no processsed foods, often locally-sourced, wholesome, nutritious and not massed-produced foods) and I quite smoking six months ago.

Many of you have a lot more experience with these tests than I do.  Your insights will be much appreciated.
One good turn gets most of the blankets.

Offline mecch

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  • red pill? or blue pill?
Re: Lack of Luck (and the power of antiretrovirals)
« Reply #1 on: November 02, 2013, 02:55:47 pm »
[quote author=Schnauzer link=topic=51166.msg610622#msg610622

  Like I said, my primary care/ID doctor hasn't mentioned anything, but he seems a bit lackadaisical so it wouldn't surprise me at all if he hasn't even looked at the results.


[/quote]
I hope someone here can give you you insight.
My observation is that if I have a concern or worry about my health I tell the doctor and expect to get an answer. 
So how do you normally get results?  Did you see the doctor yet for these results yesterday?  Can't you ask for his/her opinion if there is a concern here and if there is, what is the next step?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

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Re: Lack of Luck (and the power of antiretrovirals)
« Reply #2 on: November 02, 2013, 03:28:10 pm »
These results are the worst ones I've had since starting on HAART.
You're still UD, right? What's the problem?

if its your cd4 count you're worried about (yours only changed by a little over 100 which is possible any day), you might want to see a post I posted earlier (http://forums.poz.com/index.php?topic=51162.msg610626#msg610626) that talks about why NOT to worry when they change some. It's all about the trend ;)

it's all about how well you are, about how well your cd4s work. having more cd4s does not necessarily make you healthier. ;)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline wolfthorn

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Re: Lack of Luck (and the power of antiretrovirals)
« Reply #3 on: November 02, 2013, 04:33:32 pm »
being UD is great; i don't see a problem

with GFR the cobicistat component of stribild increases the estimated GFR by reabsorbing creatinine in the kidneys. apparently it doesn't actually change kidney function.
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline emeraldize

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Re: Lack of Luck (and the power of antiretrovirals)
« Reply #4 on: November 02, 2013, 07:21:11 pm »
My doc would have the same reaction as yours. I hope you can relax about this.

Offline oksikoko

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  • Writing the congressman again
Re: Lack of Luck (and the power of antiretrovirals)
« Reply #5 on: November 02, 2013, 10:14:00 pm »
I guess I'm still a newbie for a few weeks, but I follow other people's numbers with great interest (because I'm a voyeur and busybody). Yours look pretty good to me, and as leatherman said, CD4 can fluctuate wildly depending on stress that day or how much sleep you got or whether or not you were fighting a mild flu at the same time, etc. etc..

I'm concerned more that you don't seem to have a partnership with your doctor. Of course, that's a big generalization from this one incident, so don't let me mischaracterize things. Do you feel comfortable asking him questions about your treatment and results?
Code: [Select]
2014-11-14: CD4 Wars Episode II: Return of the Stribild (released in Europe as Stribild II: Werewolf Bitch)
2014-11-06:                ☣ VL (→) 12,627      ☣ CD4 (→) 639
2014-??-??: off treatment  ☣ VL (?)              ☣ CD4 (?)
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

If no one complains, nothing will ever change.

Offline leatherman

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Re: Lack of Luck (and the power of antiretrovirals)
« Reply #6 on: November 02, 2013, 11:18:49 pm »
CD4 can fluctuate wildly depending on stress that day or how much sleep you got or whether or not you were fighting a mild flu at the same time, etc. etc.
so true!

smoking cigarettes (or marijuana) actually raises cd4 counts. but before anyone goes out and binges on either, the effect is only slight and for a short amount of time. The lung damage from the cigarettes is much more than any temporary cd4 gain a person might get.

Also, in reference to the OP's comments about his exercise regime, getting a cd4 test done 30-60 mins after exercise can actually lower your cd4 count!!! but the count rebounds - and improves - after that (proving that exercise does help, even if it isn't a permanent "fix"/raise to cd4 count).
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline jkinatl2

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Re: Lack of Luck (and the power of antiretrovirals)
« Reply #7 on: November 03, 2013, 01:21:42 am »
Say what you will, I will continue to toke until I reach 1000 CD4 cells.

Challenge accepted, muthafokkers.

:)
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline elf

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Re: Lack of Luck (and the power of antiretrovirals)
« Reply #8 on: November 03, 2013, 01:20:52 pm »
The CD4 range can be pretty wide (my extremes on therapy: 700-1400, but what I get most of the times is 1100),
but as long as your CD4% is stable, you shouldn't worry.  ;)
« Last Edit: November 03, 2013, 01:25:07 pm by elf »

Offline Schnauzer

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Re: Lack of Luck (and the power of antiretrovirals)
« Reply #9 on: November 04, 2013, 01:24:11 pm »
Thanks to everyone who has offered guidance and information.  It's much appreciated.  You've made me realize once again that I'm probably part of the "worried well" - which is not quite as good as simply being "well" but a lot better than being "not well."

Still, I have a few questions, counterpoints and comments:

if its your cd4 count you're worried about (yours only changed by a little over 100 which is possible any day)... It's all about the trend ;) it's all about how well you are, about how well your cd4s work. having more cd4s does not necessarily make you healthier. ;)

You're right; this certainly seems to be the current trend in HIV care.  Nevertheless, when you have, say, only 44 CD4s doctors get quite concerned.  If your CD4s are below 200 then you're put on Bactrim to prevent OIs. It seems that once you crashed through the ceiling with more than 300 CD4s, you're told not to worry too much about how many there are.  But it seems, then, that the number of CD4s one has is important since it's an indication of immune system health and reconstitution (if your immune system has been damaged) whereas having an undetectable viral load implies that there won't be any further damage to your immune system. But what do I know?

with GFR the cobicistat component of stribild increases the estimated GFR by reabsorbing creatinine in the kidneys.

Isn't it the other way around - cobicistat decreases the GFR and increases the creatinine?  Either way, cobicistat, as well as tenofovir, can have an effect both on kidney function and the testing itself.  I'm worried because my GFR went from 101 to 77.  Chronic kidney disease is defined as having a GFR of less than 60. Yikes!

I'm concerned more that you don't seem to have a partnership with your doctor. Of course, that's a big generalization from this one incident, so don't let me mischaracterize things. Do you feel comfortable asking him questions about your treatment and results?

Maybe I spoke too harshly about my doctor.  He is a very nice guy and very easy to talk to.  But a few things have happened during the year that I've been seeing him that have made me a bit wary: I was supposed to start Stribild in Jan 2013, but because I had an 18-month surplus of Atripla (due to the magic of mail-order pharmacies) and because I wanted to build up a respectable reserve of Stribild, I didn't start the Stribild until June 2013.  Not once during those five months of theoretically being on Stribild did my doctor call me to have me come in and get blood work done. After six weeks of taking Stribild, I did get blood work done, but the doctor didn't order kidney function tests or lipid panel.  Given the concerns with Stribild, I'd have thought a kidney function test would have been one the first things he would have wanted to see, and a lipid panel would have been important since I stopped taking simvastatin when I started Stribild. On my most recent visit, he wrote a prescription (d'fuq? Last time I had one of those Madonna was doing her "Virgin" tour) for the wrong medication. Lucky for me it was for a much sought-after sedative so, of course, I had it filled and I'm feeling particularly relaxed these days.

Say what you will, I will continue to toke until I reach 1000 CD4 cells.

Challenge accepted, muthafokkers.:)

Oral sex and weed - that's what I call a good time.  Are you free this evening?  :P
One good turn gets most of the blankets.

Offline harleymc

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Re: Lack of Luck (and the power of antiretrovirals)
« Reply #10 on: November 07, 2013, 06:35:07 am »
Undetectable viral load....that's the headline number all the rest is window dressing.

 


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