It Doesn’t Sleep

[ErosWired]

In August my HIV doctor put me on a new medication which she said is just as effective as the one I’d been taking, but would not be as likely to damage my kidneys. She ordered a viral load test to see how it was doing, and I just got the result.

It did not do well.

Not only did my viral load jump, it quadrupled, to the highest level I’ve seen for nine years, since I was in the hospital with AIDS, and higher than on any other med I’ve taken. This tells me two things:

1) Not all HIV meds are alike or even close to it, and you can’t assume anything; and

2) The goddamn Enemy Virus never sleeps. It may spend years Undetectable, but it’s always there, waiting for any opening, waiting for the smallest crack in the armor, so it can jump right back in to start killing me again.

It’s so frustrating, so discouraging. A war without end.

Edited October 19, 2023 by ErosWired

[onlyraw]

ErosWired-

I am so sorry to hear the news.

I guess that explains why there are so many different meds out there… if  our little friend was so easy to contain there would just be one cheap generic.

I hope you don’t have to experiment with too many to find a new med that works and is kind to your kidneys (and your liver and all the other organs that our meds can do real damage to)

Good luck! 

Onlyraw 

[evilcoyote]

Sorry to hear the new meds didn't work as expected. Hopefully they can find one that will be kind to your body and help bring your levels back under control.

[hntnhole]

Very sorry to know this, ErosWired.  

We're all sending you our very best wishes .... 🥰

[norefusal]

wishing u the best 

[FelchingPisser]

Sorry to hear this--but I'm glad you posted.  It needs to be said on this forum.

 

[NWUSHorny]

Sorry to hear this. I wish we could put this message on every single one of the damned bugchaser threads.

[hairyone]

I'm so sorry, ErosWired.  I hope they can find one that works for ya.

What were you on and what did you switch to?

[ErosWired]

21 minutes ago, hairyone said:

What were you on and what did you switch to?

I was on Biktarvy, switched to Juluca. Just talked to my doctor, and she’s put me back on the Biktarvy. We’re just going to have to watch the kidney function carefully, and I’m going to need to be drinking water like a fish.

They say what doesn’t kill you makes you stronger. I ought to be goddamn invincible by now. So much for that theory.

[PozBearWI]

41 minutes ago, NWUSHorny said:

Sorry to hear this. I wish we could put this message on every single one of the damned bugchaser threads.

Being an admin on another bugchaser site, I definitely will put it as a message on our site.  There are already many similar.  I think it is fine to chase, everyone can make up their own mind.  This is one of the things that occurs with HIV.  It can still surprise us.  Thankfully not often.  So if one chases and expects any sort of guarantee this sort of thing can't happen to them, I encourage them to think again.  If on the other hand your characterization of bug chasing and our sites as "damned"; I'll say the same thing I say to "right to lifers", my body my choice.  Information great; castigation not so much...

[JamesL100]

Thank you for your brave honesty. There are many options these days and I'm sure one will work out for you X

[BootmanLA]

This - this is why I say it's a myth that "all HIV is today is one pill a day and everything's hunky-dory".

Yeah, it works out like that for most guys - almost all of them, in fact. Until it doesn't. 

And it's worse when they have to account for interactions of other medications you may end up on. For instance, I was pre-diabetic when I was HIV-diagnosed. The first HIV med I was placed on (Genvoya) did a fantastic job of rendering me undetectable, but it was also starting to slightly affect my kidney function - enough that they monitored it closely. When my blood sugar situation got a little worse, I was put on a daily medication for that, too - but it and the Genvoya both started doing a number on my kidneys, and it was clear one or both had to be changed, ASAP. They opted for both to change, and for now, my kidney function on Biktarvy is pretty stable - but it's not improving much from the damage rendered already.

My other conditions are likewise "under control" - blood pressure, cholesterol, etc. - but there's no telling when one of those might need a stronger medication than I have now. And there's no way to know, at this point, if such a med will combine with Biktarvy to start doing a number on my kidneys again, the way it was for ErosWired.

Basically, there's a whole host of conditions that many - if not most - of us will face as we get older, any of which may complicate HIV treatment enormously. We don't hear about a lot of these cases, but they're out there, and not as uncommon as one might think. 

[ErosWired]

5 hours ago, BootmanLA said:

This - this is why I say it's a myth that "all HIV is today is one pill a day and everything's hunky-dory".

Another thing about my situation - and I’ve mentioned this before elsewhere on the forum - I’m the poster boy for meds compliance. I Do Not Miss taking my pill. Ever. Even if you do take it every day, it’s not an ironclad guarantee. I’m slavish about doing it all the right way, to get the absolute maximum edge  the medication can give me against the disease - and I’m still in the shape I’m in. There’s nothing I can do to improve on it, nothing I can do to reach this state of ‘hunky-dory’ that guys seem so blithely confident they’re going to cruise along in. If they can, more power to them - but it won’t be because the medication is foolproof, or because the Enemy is sleeping. The Enemy is just waiting, patiently, for its chance. And it can, because it’s not going anywhere.

[PozBearWI]

Indeed @BootmanLA ARV's may pose side effects I don't know of yet.  

[ErosWired]

A collateral question I’ve had for some time now, and can’t seem to get a straight answer for, is what viral load actually, functionally, qualifies as Undetectable for purposes of Untransmittability.

The first time I was tested and found to be Undetectable, the threshold for U was a viral load below 200, which is the threshold for Untransmittability established by the PARTNER-1 and PARTNER-2 studies (2008 and 2018 respectively, the latter confirming for receptive anal intercourse). Following that, with improved testing, the threshold for U dropped to below 50. Now, testing precision has brought the threshold to below 20. So, where a person was once Undetectable with a viral load of 199, now he isn’t. Yet according to the science, he still is Untransmittable. Therefore, now, Undetectable=Untransmittable, but Untransmittable (not necessarily = ) Undetectable?

It doesn’t help that authorities differ on the level they publish as an Undetectable viral load. Checking today, I find that some say 20, some 50, some 200. My HIV doctor uses 20, and she’s always going on about how sensitive the tests are getting. But she’s mostly interested in keeping the virus from eating me alive, less interested in whether I can fuck someone without putting them at risk - which is a huge issue for me. Unless I’m Untransmittable, I do not, will not, fuck anyone ever again.

This last check put my VL at 80. Detectable by two standards, Undetectable by the third. Untransmittable by demonstrated science. So, am I still safe, or an I not? Am I just less Undetectable? Does that mean Undetectable isn’t an absolute state? After all, you can’t be slightly pregnant or very dead - you either are, or you aren’t.