Truvada and kidney function - Doc stopped PrEP

[yngdiego]

I've been on PrEP for a bit over a year now. As a result, I've enjoyed better sex with less worry. But my doc has tested kidney function several times, and said it has been declining and stopped my Truvada. She's sending me to a HIV specialist in a month who knows more about PreP/HIV drugs.

I'm not sure what numbers she is looking at, but based on my last labs I see:

Creatinine 1.55 mg/dL (0.67 - 1.17 mg/dL) H
GFR 49 mL/min

Prior to starting Truvada my  Creatinine measurements were 1.14 (pre-Prep) then 1.25, 1.44, 1.41, and finally 1.55. GFR history is 54, 55, 49 (latest). I read elsewhere on the internet GFR of '100' is normal. 15 is kidney transplant time.

Is this really a problem, or is my family doc being overly cautious? I don't want to damage my kidneys, but I also really don't want to go back to condoms 100% of the time.

I'm stopping prep for a month, then they will re-test kidney function to see if it bounces back.

[Expat1]

Yes it is a problem.  Trust your doctor.

[yngdiego]

After being off Truvada for 6 weeks, my doc re-ran tests. GFR is now back into the normal range. So kidney's seem to have bounced back. She referred me to a HIV specialist in 6 weeks to further discuss PrEP and what to do.

The last thing I want to do is permanent damage to my kidneys. But given they bounced back in 6 weeks, would it be ok to restart Truvada and monitor kidneys? Last time I was on it for about 15 months.

I've seen a TAF form of "Truvada" that is supposed to be less toxic to the kidneys. Seems to work as PreP in monkeys. But I haven't see any timeline for human studies, or for that matter any guesses on FDA approval as PrEP. Anyone have insight?

[Jim Allen]

Hi

Best thing you can do is work with your Doctor regarding resuming PrEP and what course of PrEP is available to you. No point in asking about a medication here if its not available to you. So speak to your doctor about your options are and given your history if you do restart what level of monitoring they would be recommended.

In short there is no "one size fits all" answer that fits a personal specific medical needs/situation.  Work with your doctor.

Jim
 

[yngdiego]

I talked to a HIV specialist today, and she made a recommendation. Do not resume Truvada, but instead switch to off-label usage of Descovy (the TAF form of Truvada). While she acknowledges Descovy is not FDA approved for PrEP, she said it should be just as effective. I called my insurance, and it's covered and no prior authorization needed. So I should be able to get it.

I do have a bit of reluctance in using Descovy as PrEP when it hasn't been evaluated in humans. But neither do I want my kidneys ruined because of Truvada, and die from renal failure.

Should I seek a second opinion from a HIV specialist regarding Descovy as PrEP?

[mecch]

I don't try to second guess doctors but I do sometimes go to a different doctor to see if there is different opinion.  They are the experts, not me.  So maybe get the opinion of another doctor.

Also my two cents is that the recommendation for use of PrEP is still to use it with condoms.  So all the people using it without condoms are doing so "off-label" in my view. Correct me if I am wrong.

Therefore perhaps consider using condoms and having PrEP for when and if it includes the newer Truvada and has been tested for that.  Or for when the medical establishment dares to say PrEP doesn't need to be associated with condoms. 

I personally wouldn't multiply the "off label" things I am doing. My personal opinion of course.

[yngdiego]

I talked to Gilead, and there is in fact a study starting for testing Discovy as PrEP. Estimated results are 2020. This is the first time I saw a confirmed study. Good news, even if the results are a few years off.

https://clinicaltrials.gov/ct2/show/NCT02842086?term=NCT02842086&rank=1