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Author Topic: nagging uncertainty about switch from truvada to kivexa/ kidney issue.  (Read 5592 times)

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Offline joemutt

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My doctor wants me to change from Truvada to Kivexa
she said I have kidney problems; diminished kidney function which in the end will lead to dialysis.

She uses a formula to calculate a marker for this problem :
(Ur Ph x Ser Cr / Ser Ph x Ur Cr) x 100
In October this was 16.69
In January this was 17.

Serum Creatinine has been constant at 1.1

My uncertainty is about the following :

- she doesn't know 'when the optimal moment for this change would be, now or in a few months'; this makes me very unsure about my course of action, I fear there might be irreversible damage done by waiting or by switching;
- I do not know what this calculation signifies and whether this is bad;
- I read contradictory reports; is Truvada causing kidney problems and is Kivexa also not causing kidney problems? Or is there a better alternative?
- What can we do more as poz people to protect our kidneys?

I sleep a lot recently and have had a a feeling of discomfort in my right kidney and flank.
Does anybody have some input? I have read previous posts but it remains unclear to me what to do now. Thanks.

Offline Miss Philicia

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #1 on: February 02, 2014, 10:51:41 am »
Kivexa, aka Epzicom, can cause liver complications not kidney -- notably lactic acidosis. And yes, certainly kidney issues can occur with the use of Truvada from the Viread component, this is well known: http://www.aidsmeds.com/archive/Truvada_1584.shtml

Read the side effects section here: http://www.aidsmeds.com/archive/Epzicom_1580.shtml

As far as how quickly you need to switch off of Truvada I can't say -- I'm not a doctor and am not going to tackle reading that calculation. This is when you should go by your doctor's advice. This is why they run other tests on HIV patients besides cd4 counts and viral loads, and then can catch potential damage to something like your kidneys before it becomes permanent. In general it's not cause for undue alarm or crisis -- but I would say of the NRTI class of meds the next step is to switch to Kivexa as long you passed the "hypersensitivity" test for that med that is routinely given.
"I’ve slept with enough men to know that I’m not gay"

Offline newt

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #2 on: February 03, 2014, 12:07:43 pm »
I am interested to know exactly what test your doc is using, cos it seems, well, non-standard.

A creatinine level of more than 1.2 for women and 1.4 for men may be an early sign of kidney problems. There are other validated tests listed here, of which eGRF (estimating how much gets filtered by your kidneys over time) is the biggie, and others useful.

http://www.kidney.org/atoz/content/kidneytests.cfm

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

Offline eric48

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #3 on: February 03, 2014, 05:30:12 pm »
Hi,

This here sound close to the formula used:

http://www.uams.edu/clinlab/urinecollectionandformulas.aspx

http://www.healthcare.uiowa.edu/path_handbook/Appendix/Calculators/creat_clear.html

in standard follow up they seem to prefer the Cockcroft-Gault equation, as urine is then not needed.

The doctor did a full test, probably out of concern for your kidneys.

Some time a lab sheet will show the calculated/estimated clearance (mine do)
You may want to check

That being said, if you are eligible for Epzicom, you way want to get the opinion of other patients on this forum who did the switch

As far as I can recall, everyone seems happy with it, no complaints.

I take Epzcom.

I have some reservations sometimes, but not to the extend that I would consider nor mind a switch to Truvada. Epzicom and Truvada may represent some 30 and 70 % of NRTIs backbones respectively. If tolerated, they are both considered as equally tolerable

Hope this helps

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline eric48

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #4 on: February 03, 2014, 05:38:24 pm »
I think she calculates

calculation of the fractional excretion of filtered phosphate (FEPO4)

then, I don't know what ranges/grades are in this field

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline WillyWump

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #5 on: February 03, 2014, 05:38:58 pm »
Hi Joe,

I was taken off Truvada and moved to Epzicom (Kivexa) due to my Kidneys deteriorating. I cant remember my numbers but I remember it is Chronic Kidney Disease Stage 2 and 3 ( I am right on the border of 2 and 3 and fluctuate between the 2 stages. After switching to Epzicom the deterioration stopped. Although they haven't gotten any better the doc says there is still a good chance I can regain some function. Basically at this stage all I do is watch my salt intake, no other measures are to be taken. Other than to monitor my kidneys very closely.

I love Epzicom. Zero side effects for me.

btw, It is a small percentage of us that have these kidney issues with Truvada, I (and you) were just one of the "lucky" ones. ::)

-Will
« Last Edit: February 03, 2014, 05:41:33 pm by WillyWump »
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 eric48

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #6 on: February 03, 2014, 05:45:12 pm »
normal value is 15–20%

from

http://www.intmedpress.com/serveFile.cfm?sUID=acf885bf-2697-4a20-aae7-e10e19406550

So you may want to have the opinion of a specialized nephrologist, to make sure...

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline Miss Philicia

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #7 on: February 03, 2014, 06:02:54 pm »
I wonder why I get sent for an abdominal ultrasound for my liver yet you kidney folks do not get one.
"I’ve slept with enough men to know that I’m not gay"

Offline eric48

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #8 on: February 03, 2014, 06:19:03 pm »
Cause There is no fatty kidneys
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline Miss Philicia

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"I’ve slept with enough men to know that I’m not gay"

Offline joemutt

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #10 on: February 03, 2014, 09:42:33 pm »
Back to topic.

Thank you for the replies. I was looking for feed back from people who made the switch (WillyWump) and those with a scientifically inclined mind (Newt and Eric48)  :P. and I received more than I expected  ::).

My insecurity in this comes also from living far away from my doctors who are excellent (one in Europe at 9000 kilometers and one in Bangkok at 1000 kilometers away). But I see one of them every 3 months and have to fly to do so.

In rural Thailand it is difficult to get care and answers. So I am glad there is a community with a lot of experience here.

I will post here if I find out more myself. Thanks again.

(added : I have been poz and on meds for 17 years, VL < 40, CD4 around 1000 for the last 10 years. I have issues shared by many (muscle, fatigue, pain) but fine with that. I had seizures in 2008 and 2012 and adjusted my diet and lifestyle : lost 15 kg, yoga, meditation, nature)


« Last Edit: February 03, 2014, 09:48:15 pm by joemutt »

Offline eric48

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #11 on: February 04, 2014, 04:40:39 pm »
and I received more than I expected  ::).

You're most welcome !

But, wait until you receive our fees ;-)

An intriguing question is why Phosphorus ? Your bush-doctor might be smarter than she appears

Also do not switch until the HLA B*5701 test is done and results received

test takes a month and a bunch of $$ but is a must do to make sure you can safely initiate Epzicom

(Well, where you are, they might just as well ask you to visit the clinic every other day, that might cost less)

Say Hello to Colonel Walter E. Kurtz (better be nice to him, you never know)

Cheers

Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

Offline joemutt

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #12 on: February 09, 2014, 03:52:01 am »
Thanks,
I did the test for HLA B*5701 last October, it was ok. This test costs a little over 6 dollars in Bangkok.

My doctor there, Mattana Hanvanich, has good qualifications both from Thailand and the US - John Hopkins-, was professor at Chulalongkorn University - doesn't do email and phone, and is 600 miles away.

I had news from my other doctor (in Europe) He says the phosphorus diminishing in blood is another indicator for kidney issues (hypophospahatemia).
He says it is not urgent to change but to monitor every 3 months.

I will change to Epzicom at my next visit to Bangkok, I will keep the Viramune in my combo.


Offline eric48

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Re: nagging uncertainty about switch from truvada to kivexa/ kidney issue.
« Reply #13 on: February 09, 2014, 09:24:51 am »
phosphorus diminishing in blood

That is what I thought... She has been looking for Ph leakage because you have phosphorus diminishing in blood

If you had leakage (that is what the fractionnal efficiency should show) then it would explain why you have phosphorus diminishing in blood

Yet, I fail to see the leakage, nor kidney damage (me, I not a doctor)

If phophorus is low, then (you may want to check) it may be due to bone density decreasing (here again,  I not a doctor)
If this is the case, you may have vit. D deficiency.

1.000.000 UI /month (one vial to break into a drink) is $3/month and efficient (more effcient than 2000 UI OTC daily)

If bone density become a concern, here again the switch to Epzicom may help

So I 'think' that the rationale is wrong (kidney failure ??) but the conclusion remains same

Welcome to the exclusive club of V&K users !

(anyway, if you have been on a regimen for very long, a minor switch is one way to 'balance' possible long term side effects)

Hope this helps  - Eric
NVP/ABC/3TC/... UD ; CD4 > 900; CD4/CD8 ~ 1.5   stock : 6 months (2013: FOTO= 5d. ON 2d. OFF ; 2014: Clin. Trial NCT02157311 = 4days ON, 3days OFF ; 2015: https://clinicaltrials.gov/ct2/show/NCT02157311 ; 2016: use of granted patent US9101633, 3 days ON, 4days OFF; 2017: added TDF, so NVP/TDF/ABC/3TC, once weekly

 


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