POZ Community Forums
Main Forums => Living With HIV => Topic started by: GSOgymrat on January 26, 2012, 05:57:50 pm
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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.
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Good luck, Ford. Hopefully it's caught early if that's what it is.
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Sorry to read this Ford... sending you my best and lets hope they find a remedy for whatever is going on. Hang in there!!
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So off the tneofovir and perhaps atazanavir then?
Nice dog in your pic
- matt
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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
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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.
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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!
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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 ;)
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Sorry to hear this Ford. Wishing you the best.
Ray
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Hoping all goes well Ford !
I am on the same pills ???
Maybe it was a blip ?
((( HUGS ))) Carl :-*
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Sorry to hear this Ford. Sending good vibes and wishing you the best.
Take care.
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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
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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?
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Sorry you're having kidney troubles. Hope the combo change and other measures go of smoothly.
Best
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Fordala,
Matty the Damned is keeping you in his daily anxieties.
:-*
MtD
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Ford,
Sending good thoughts -- here's hoping that an early intervention leads to improvement.
Mike
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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
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I'm sorry to hear this Ford. I hope the med switch stop issues quickly..
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Hey Ford,
Here's hoping you find a quick resolution to your kidneys issue.
Joe
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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.
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Hope it all gets sorted out.
Best wishes and take care.
Wolfie
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Sorry kidneys not doing so well. :( I hope you and your doctor are able to sort it out soon.
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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 (http://www.renal.org/eGFRcalc/)
- matt
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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.
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Good news then, Ford :)
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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 ::)
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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.
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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.
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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
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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 ::)
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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.
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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.
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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.
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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.
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Glad you're heading in the right direction. I hope I never develop Truvada issues as this is my last combo currently available.
Wolfie
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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.
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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.
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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.
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I got my labs back and success on both counts.
Awesome news, Ford. Congrats :)
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Woo Hoo -- happy to hear that you got to the root cause and things have turned around.
Mike
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That is great news, Ford.
I envy your ability to take Epzicom.
HUGS,
Mark
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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
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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) :(