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Posted

Just wondering if any of you have been doing less than daily dosing, and whether you feel sufficiently protected given your level of risk.

 

Been thinking of going down to 4 pills per week, just to reduce the level of toxicity and dampen the side effects.

 

I still experience mostly GI issues (loose stools, occasional abdominal cramps), despite having been on PrEP for 2 months now.

 

But more than the persistent GI issues, I also had a bit of a scare from my last urine test, which came back with microscopic amounts of blood (not visible to the naked eye). I had to get an ultrasound on my kidneys, and a rather unsettling urological exam (cystoscopy) to check my bladder. The urologist insists that everything is normal, and that I have a case of 'essential hematuria', which he says is simply unexplained small microscopic amounts of blood in urine that we cannot really fix - it's just there, and it just happens to some people without becoming a problem.

 

My urine test before Truvada did not exhibit this problem, and PrEP is the only thing that has changed in 2 months, but the urologist and my GP both say 'don't worry'.

 

As far as my risk, I only bottom BB with my hubby (and I top him 90% of the time), but I do occasionally top guys raw. He has only bottomed raw once since we both got on PrEP, and the guy did not breed him. Of course, time can only tell, but for now he insists that he will not bottom raw again, even whilst on PrEP (except bottoming raw for me), unless the other person is for sure on PrEP, as well. So, I tend to believe that, all in all, both our risks are relatively low.

 

I'd like to hear your experiences with non-daily dosing, how many doses in a week (at least 4?), how risky your behaviour has been, and whether you feel you're still sufficiently protected.

 

Thanks!

Posted

In the PrEP research trials, no one whose blood levels proved they had taken four or more doses a week contracted HIV. That is not to say that you should unilaterally drop your dosage below the recommended daily use -- just that there is evidence that protection is pretty good with a minimum of four doses. 

 

Estimated effectiveness breaks out like this:

2 times per week would result in a 76% risk reduction;
4 times per week would result in a 96% risk reduction; 
7 times per week would result in a 99% risk reduction.

 

For more info, see: https://www.facebook.com/PrEPFactsFAQ/posts/750294228421107

 

Do not assume that symptoms you are experiencing are due to Truvada just because they're happening now. Correlation does not equal causation -- things can be coincidences. Nor is there any guarantee that taking just 4 doses a week would reduce side effects.

It sounds like the safer course is to keep taking the meds as prescribed, continue to monitor your kidney situation, and listen to what your doctors say to you.

 

As for GI side effects like loose stools: more than likely these will continue to diminish with time. 

Posted

Thanks for the reply. Since I'm actually not as active in playing around as I'd like right now (too busy with other stuff), I've already started to lower my dose to 4 pills/week, based on the same finding you cited of 4 pills ~ 96% protection. I figured being mostly a top, not bottoming raw for others (except on occasion for my hubby, who's also on prep) and even adding condoms to that mix (if I'm playing with someone not on prep or undetectable), I'm pretty comfortable with my risk.

  • Upvote 1
  • 4 weeks later...
Posted

For maximum effectiveness, you really need to take PrEP daily.

 

Like you, I too suffer from hematuria, but I had this prior to starting PrEP. I've had ultrasounds, cystoscopy, CT scans and there's nothing amiss. It just happens to some people.

 

I've only been taking PrEP for 4 days, so it's too early to tell if this will have any effect on it. A friend has been forced to go back to taking a tablet every other day, as his kidney function is compromised due to age (he's 84). He is being closely monitored to determine if the levels of Truvada are still maintained at a therapeutic level. I'll let you know how he's getting on.

 

If you can put up with the GI problems, I'd continue to take it daily.

Posted

Thanks, kernowk9. I'm really glad to know I'm not the only one with hematuria.

 

My hubby and I have our usual PrEP-related labwork coming up in the next week, so we'll see what they find (and if the problem comes up for me again and they want to send me for another round of tests).

 

For now, since we really only play with others about once a month, and I haven't even played BB with strangers at all since we both started prep (hubby's been fucked raw by someone else only once, but the guy did not cum inside), I think we're both pretty comfortable with 4 pills/week. If we start playing with others more frequently, especially BB, then we'd probably go to full dosing.

 

We're also trying to minimise the toxicity, as well as have a stash of the medication in case we ever have a problem with access. As you know, we Americans are tied to our jobs like indentured servants in order to have access to barely decent health coverage that is essentially dictated/controlled by our employers. At the moment, we're fortunate enough to have relatively decent coverage, but I know that can change very quickly just by changing employers.

 

I'm definitely impressed and happy to hear that your 84-year old friend is still out there having fun! Please do let me know how he's getting on.

 

Cheers! 

Posted

It sounds like your doctor has got the labwork side of things under control. The PrEP situation is the US appears to be far better than in the UK.

 

When I approach my local GU clinic about PrEP in May this year, they wouldn't even agree to do the follow up care if I chose to buy the medication myself. That's changed a bit now, and they did agree to do the initial screening (kidney function, liver function, HIV + other STDs, Hep-B antibodies etc.) plus follow up. It's all a bit hit and miss though. I'm the first patient in my clinic to be taking PrEP, so the Doctor had to get himself educated before he could help me. 

 

With regards to toxicity, then I totally understand where you're coming. My Doctor was originally going to call me back after 3 months, but has now decided to do the initial follow up at one month. Apparently, if there is going to be any decline in kidney or liver function, then it will be evident quite quickly. After that, I'll be going back to a 3 monthly monitoring cycle.

 

I understand the US healthcare dilemma very well, as I've lived and worked in both Boston and the Bay area. I was fortunate enough to work for a very good company, so never really had too much of an issue with healthcare. The prices of some things are totally scary, though. A colleague had to go in for an emergency appendectomy, and the cost of his hospital room was more per night than a suite at the Ritz in London!!!!

 

As soon as my friend has his initial test results, then I'll get in touch.

 

Take care.

 

Ian x.

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