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Author Topic: Good news, bad news  (Read 4352 times)

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Offline GSOgymrat

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  • Posts: 5,047
  • HIV+ since 1993. INTJ
Good news, bad news
« on: January 26, 2012, 05:57:50 PM »
So I had my annual physical and my doctor called me with lab results. Good news: viral load = undetectable, CD4= 789 (highest ever), CD4% = 29 (highest ever). Bad news: apparently my kidney function is declining. My doctor has been monitoring this and now it has reach the point that further tests are warranted. I am scheduled for a kidney ultrasound on Monday and a 24 hour urine collection. My doctor said it is probably related to HIV medication and they may need to be changed. I'm on Reyataz, Truvada and Norvir. I looked online and I don't have any of the symptoms of renal insufficiency: urinating less, edema, fatigue, weight loss, poor sleep, etc. I also don't have the common conditions that cause renal insufficiency, such as high blood pressure or diabetes. We shall see how it goes.

Offline Miss Philicia

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Re: Good news, bad news
« Reply #1 on: January 26, 2012, 06:12:48 PM »
Good luck, Ford. Hopefully it's caught early if that's what it is.
"Iíve slept with enough men to know that Iím not gay"

Offline hope_for_a_cure

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Re: Good news, bad news
« Reply #2 on: January 26, 2012, 06:19:17 PM »
Sorry to read this Ford... sending you my best and lets hope they find a remedy for whatever is going on.  Hang in there!!

Offline newt

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Re: Good news, bad news
« Reply #3 on: January 26, 2012, 06:28:54 PM »
So off the tneofovir and perhaps atazanavir then?

Nice dog in your pic

- matt
"The object is to be a well patient, not a good patient"

Offline WillyWump

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Re: Good news, bad news
« Reply #4 on: January 26, 2012, 06:39:27 PM »
Have fun with the 24 hour urine collection. it sux.

I was taken off Truvada because of Low Kidney function. The good news is Doc said I might regain function after a bit.

-w
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline GSOgymrat

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  • HIV+ since 1993. INTJ
Re: Good news, bad news
« Reply #5 on: January 26, 2012, 06:43:31 PM »
So off the tneofovir and perhaps atazanavir then?

Nice dog in your pic

- matt


Thanks. I assume the Truvada will be discontinued but I don't know which combo will be kidney friendly.

Offline tednlou2

  • Member
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Re: Good news, bad news
« Reply #6 on: January 26, 2012, 06:52:52 PM »
I keep reading this issue with Truvada only happens in a very small percentage.  Is that still accurate?  Anyway, all the best with the testing and resolving the issue.  It's usually pretty reversible, right? 

Take care!

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Good news, bad news
« Reply #7 on: January 26, 2012, 06:53:44 PM »
Join the club Ford, sorry to hear this, they may do what my doctor did, since I'm still UD, she just cut the Truvada down to every other day,

 oh and I don't wanna add insult to injury, but they may put you on a low-sodium diet ,

so be prepared to piss in a cup every time you do blood work,

let's hope they aren't as bad as mine got before they deiced to actually do something about it, I'm stable now, kidneys are still fucked up, I'm still on Truvada, and I drink a lot of lemon water, about 10 to 12 glasses a day, oh , and I pee a lot too   ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: Good news, bad news
« Reply #8 on: January 26, 2012, 07:52:30 PM »


Sorry to hear this Ford.  Wishing you the best.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline weasel

  • Member
  • Posts: 1,711
Re: Good news, bad news
« Reply #9 on: January 26, 2012, 09:16:16 PM »

     Hoping all goes well Ford !

     I am on the same pills   ???

      Maybe it was a blip ?
                                          ((( HUGS )))   Carl   :-*
" Live and let Live "

Offline OneTampa

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  • "Butterflies are free."
Re: Good news, bad news
« Reply #10 on: January 26, 2012, 09:21:09 PM »
Sorry to hear this Ford.  Sending good vibes and wishing you the best.

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaŪto frito."

Offline aztecan

  • Member
  • Posts: 5,414
  • 29 years positive, 57 years a pain in the butt
Re: Good news, bad news
« Reply #11 on: January 26, 2012, 10:37:59 PM »
Hey Ford,

Sorry to hear of the kidney issues. I hope it can be as simple as switching the Truvada for something else.

Nice numbers though, so that is something to be happy about.

Did I read your post correctly and you only have labs done annually? I have never heard of anyone going that long before.

Med issues can be a bitch at times. Some positive energy is heading your way.

HUGS,

Mark
« Last Edit: January 26, 2012, 10:40:57 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Hellraiser

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  • Posts: 4,140
  • Semi-misanthropic
Re: Good news, bad news
« Reply #12 on: January 26, 2012, 10:45:51 PM »
I hope it's nothing too serious so you can continue your good health.  Do you need me to kiss your lower back to make it all better?

Offline spacebarsux

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Re: Good news, bad news
« Reply #13 on: January 27, 2012, 01:05:36 AM »
Sorry you're having kidney troubles. Hope the combo change and other measures go of smoothly.

Best
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Matty the Damned

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Re: Good news, bad news
« Reply #14 on: January 27, 2012, 07:01:38 AM »
Fordala,

Matty the Damned is keeping you in his daily anxieties.

 :-*

MtD

Offline bocker3

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  • You gotta enjoy life......
Re: Good news, bad news
« Reply #15 on: January 27, 2012, 07:25:22 AM »
Ford,

Sending good thoughts -- here's hoping that an early intervention leads to improvement.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Good news, bad news
« Reply #16 on: January 27, 2012, 08:34:49 AM »
Ford

I had to do both of those a couple of times few years back. Still remember that cold gel for the ultrasound....  But once I switched off truvada and went through a little issue with isentress all the kidney stuff went away.

I still see the nephrologist once a year for a follow-up (once they have you in their clutches...) but he tells me there's no problems now. 

Hope it is non-eventful for you as well.

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline skeebo1969

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Re: Good news, bad news
« Reply #17 on: January 27, 2012, 09:43:30 AM »


  I'm sorry to hear this Ford.  I hope the med switch stop issues quickly..
I despise the song Love is in the Air, you should too.

Offline Joe K

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Re: Good news, bad news
« Reply #18 on: January 27, 2012, 10:13:16 AM »
Hey Ford,

Here's hoping you find a quick resolution to your kidneys issue.

Joe

Offline GSOgymrat

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  • HIV+ since 1993. INTJ
Re: Good news, bad news
« Reply #19 on: January 27, 2012, 12:01:12 PM »
Did I read your post correctly and you only have labs done annually? I have never heard of anyone going that long before.

No, I considered it but Ms. P convinced me it is not a good idea. My last labs were in August.

I looked back through my previous labs and my creatinine level was normal until I switched to my current combo in 2006. Normal range is 0.40-1.50 and my levels have run around 1.56 until this test which was 1.71. My bilirubin also became elevated when I made the switch and that was attributed to Reyataz. Because I don't have any other common risk factors for kidney disease I think this problem is directly related to my current medication combo. I am hopeful that switching to something else will correct the problem. I have no clue which combo would be better and will have to defer to the experts.

Offline wolfter

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Re: Good news, bad news
« Reply #20 on: January 27, 2012, 03:39:48 PM »
Hope it all gets sorted out. 

Best wishes and take care.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Cliff

  • Member
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Re: Good news, bad news
« Reply #21 on: January 27, 2012, 04:31:59 PM »
Sorry kidneys not doing so well.   :(  I hope you and your doctor are able to sort it out soon.

Offline newt

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  • the one and original newt
Re: Good news, bad news
« Reply #22 on: January 27, 2012, 05:14:15 PM »
If you were on Truvada or tenofovir before you started Reyataz, I offer, as something to consider, that is not obviously the tenofovir in Truvada that is the culprit, but the tenofovir/Reyataz pairing that is the problem, and removing one drug may put your creatinine etc back into normal range. << if possible I would prefer to swap out Reyataz

This supposition is based on my personal experience and that of several others I know, but is a clinical (observational individual) experience, not one supported by studies. My creatinine etc went back down to within normal range after switching Reyataz for another drug but keeping Truvada.

And, really, a serious test of kidney function is estimated glomerular filtration rate, not serum creatinine alone (though a trend here may be indicative).

eGFR is simply calculated from serum creatinine and age/ethnicity, eg: an online eGFR  calculator here

- matt
"The object is to be a well patient, not a good patient"

Offline GSOgymrat

  • Member
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  • HIV+ since 1993. INTJ
Re: Good news, bad news
« Reply #23 on: February 02, 2012, 05:31:48 PM »
The results came back from my 24 hour urine collection and my ultrasound, which they were able to compare with a CT I had several years ago. The nefrologist didn't find any evidence of a problem with my kidney function. My PCP discussed my case with an HIV specialist at Duke who recommends I switch Truvada for Epzicom. I am scheduled with my PCP for a blood draw to see if I will have a hypersensitivity reaction to Epzicom. I am happy with the results, although I kinda wish I didn't have to mess with my combo.

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Good news, bad news
« Reply #24 on: February 02, 2012, 05:37:24 PM »
Good news then, Ford :)
"Iíve slept with enough men to know that Iím not gay"

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Good news, bad news
« Reply #25 on: February 02, 2012, 05:50:36 PM »
Great News Ford, looks like your kidneys are OK  ;)  I cannot for the life of me understand why after 6 yrs. I'm still even on Tarvavda, with the kidneys problems I already have  ::)

 guess I'll be asking my ID doc this next week, among a whole host of other things,

I also see my nefrologist the day before I see my ID-doc, I just finished that horrid 24 hr pee pee collection brown thingy (like you did) on Tuesdays, hope I get some good news, sure would be nice  ::)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline GSOgymrat

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  • HIV+ since 1993. INTJ
Re: Good news, bad news
« Reply #26 on: February 02, 2012, 07:35:57 PM »
I also see my nefrologist the day before I see my ID-doc, I just finished that horrid 24 hr pee pee collection brown thingy (like you did) on Tuesdays, hope I get some good news, sure would be nice  ::)

I hope it goes well.

Offline Miss Philicia

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Re: Good news, bad news
« Reply #27 on: February 02, 2012, 07:47:46 PM »
Great News Ford, looks like your kidneys are OK  ;)  I cannot for the life of me understand why after 6 yrs. I'm still even on Tarvavda, with the kidneys problems I already have  ::)

 guess I'll be asking my ID doc this next week, among a whole host of other things,

I also see my nefrologist the day before I see my ID-doc, I just finished that horrid 24 hr pee pee collection brown thingy (like you did) on Tuesdays, hope I get some good news, sure would be nice  ::)

You might want be on the lookout for the current trials of Gilead's GS-7340 which is a pro-drug of tenofovir. It provides antiviral efficacy at a dose ten times lower than viread. However it's only in phase 2 right now.
"Iíve slept with enough men to know that Iím not gay"

Offline WillyWump

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Re: Good news, bad news
« Reply #28 on: February 02, 2012, 07:52:27 PM »
Glad to hear it Ford.

I too was switched from Truvada to Epzicom. I love the Epzicom, although I did have a rough go of it the first couple of weeks, but that has happened with just about every HIv med I've started.

-W
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: Good news, bad news
« Reply #29 on: February 02, 2012, 07:54:39 PM »
You might want be on the lookout for the current trials of Gilead's GS-7340 which is a pro-drug of tenofovir. It provides antiviral efficacy at a dose ten times lower than viread. However it's only in phase 2 right now.

Thanks , you know they reduced the dosage of Travada down to every other day for me, since last yr.
I'll ask about that that next week, I need some real answers  instead of my 2 doctor-run-around that I've been getting for the last yr. now  ::)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline thunter34

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  • His name is Carl.
Re: Good news, bad news
« Reply #30 on: February 02, 2012, 08:22:13 PM »
Hey, Ford.  Just catching up on this thread.  Glad you have things in hand - though I understand what you mean about kinda hating to have to futz with your combo.
AIDS isn't for sissies.

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Good news, bad news
« Reply #31 on: February 02, 2012, 09:54:55 PM »
The results came back from my 24 hour urine collection and my ultrasound, which they were able to compare with a CT I had several years ago. The nefrologist didn't find any evidence of a problem with my kidney function. My PCP discussed my case with an HIV specialist at Duke who recommends I switch Truvada for Epzicom. I am scheduled with my PCP for a blood draw to see if I will have a hypersensitivity reaction to Epzicom. I am happy with the results, although I kinda wish I didn't have to mess with my combo.

You know, the first time I went through all that I got the same thing from the nephrologist.  I stayed on Truvada and the issue just went away for a year. 

But it came back at the same time the next year.  I think it had something to do with being a little dehydrated from an annual camping trip.  But by that point, I was ready to dump truvada anyway.

Epzicom has been really easy. Hope it works well for you too.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline tednlou2

  • Member
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Re: Good news, bad news
« Reply #32 on: February 02, 2012, 10:35:49 PM »
Great news, Ford.  It may not be out of the ordinary, but I'm impressed your doc consulted with an HIV specialist at Duke.  I think that says a lot about your doc by seeking another opinion instead of going it alone.

Offline GSOgymrat

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Re: Good news, bad news
« Reply #33 on: February 02, 2012, 11:28:25 PM »
Great news, Ford.  It may not be out of the ordinary, but I'm impressed your doc consulted with an HIV specialist at Duke.  I think that says a lot about your doc by seeking another opinion instead of going it alone.

I love my PCP. If I have anything going on I just call his office and they say "can you be here in two hours". I have never waited more than 10 minutes in his waiting room. He knows his HIV stuff but he also knows when to get a specialist involved. He has also advocated for me. When I needed a bone scan and it was going to take too long he was on the phone with the hospital "This delay is UNACCEPTABLE!" and got me in faster. My partner just sees an I.D. specialist and it is like trying to get an audience with the Queen.

Offline wolfter

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Re: Good news, bad news
« Reply #34 on: February 03, 2012, 01:15:46 AM »
Glad you're heading in the right direction.  I hope I never develop Truvada issues as this is my last combo currently available. 

Wolfie 

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline skeebo1969

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Re: Good news, bad news
« Reply #35 on: February 03, 2012, 08:25:31 AM »
The results came back from my 24 hour urine collection and my ultrasound, which they were able to compare with a CT I had several years ago. The nefrologist didn't find any evidence of a problem with my kidney function. My PCP discussed my case with an HIV specialist at Duke who recommends I switch Truvada for Epzicom. I am scheduled with my PCP for a blood draw to see if I will have a hypersensitivity reaction to Epzicom. I am happy with the results, although I kinda wish I didn't have to mess with my combo.

I'm glad your test came back clear.  I know it's quite the downer to have to switch, but on the otherhand, it's great that your doc is on top of this stuff.  I'm currently being monitored for a possible switch from Truvada as well.  I'm having the same issues you are.
I despise the song Love is in the Air, you should too.

Offline Buckmark

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Re: Good news, bad news
« Reply #36 on: February 03, 2012, 01:58:09 PM »
I'm glad you were proactive in investigating your kidney functions, and that they appear to be OK.  I think it still makes sense to switch meds, and don't blame you for being a bit nervous.
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline GSOgymrat

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Re: Good news, bad news
« Reply #37 on: March 23, 2012, 12:01:58 PM »
Just wanted to give a follow up. I stopped Truvada and have been on Epzicom, Reyataz and Norvir for a month to see if my kidney function would improve and if this combo would keep my viral load undetectable. I got my labs back and success on both counts. Apparently Truvada was the problem.

P.S. - I did have some odd sensations, kind of a lighthead feeling, the first couple of weeks on Epzicom but the side effects seems to have disappeared.
« Last Edit: March 23, 2012, 12:07:16 PM by GSOgymrat »

Offline Rev. Moon

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Re: Good news, bad news
« Reply #38 on: March 23, 2012, 12:29:03 PM »
I got my labs back and success on both counts.

Awesome news, Ford.  Congrats :)
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline bocker3

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Re: Good news, bad news
« Reply #39 on: March 23, 2012, 04:48:42 PM »
Woo Hoo -- happy to hear that you got to the root cause and things have turned around.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Good news, bad news
« Reply #40 on: March 23, 2012, 07:55:25 PM »
That is great news, Ford.

I envy your ability to take Epzicom.

HUGS,

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

Offline J.R.E.

  • Member
  • Posts: 7,259
  • Joined Dec-2003 Living positive, since 1985.
Re: Good news, bad news
« Reply #41 on: March 23, 2012, 08:29:32 PM »

P.S. - I did have some odd sensations, kind of a lighthead feeling, the first couple of weeks on Epzicom but the side effects seems to have disappeared.

Ford,

That's great news !!  Good luck and continued success with the Epzicom.  One of the things I had noticed after starting on Epzicom, was this " Halo" effect ,  that I was noticing at nighttime, while driving.  Lightpoles and headlamps from other cars seemed extra bright in the beginning, but those effects went away, and all has been pretty good thus far.

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg 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


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline WillyWump

  • Member
  • Posts: 7,245
Re: Good news, bad news
« Reply #42 on: March 23, 2012, 08:45:17 PM »
Fantastic news Ford!

Epzicom has been very easy to take for me, I hope you find the same.

-Will (who is still waiting for his post-Truvada Kidney rebound) :(
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

 


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