The true side effects of Prep

[Guest]

Most of the information you find online about PrEP is positive or simply showing how it basically has little to no side effects... I understand this is better than the extra meds you'd need if HIV+ and that some mild side effects on a large population/strong on a few extreme cases is tolerable to eradicate HIV...

HOWEVER, on an individual level, I've found some pretty significant side effects (I'm not including the common ones around GI issues, which I do not get or get very mildly), specifically around sleep. I simply don't sleep the same when on it, it feels as if I had a very light sleep throughout the whole night, as if my brain didn't get rest. I will start to use a wearable to track my sleep, get some measurements without Prep and then on it. 

I naturally began to do some research and found that TAF or TDF (PrEP's main active components) do impact the CNS (Central Nervous System) - which is a well known fact since these are drugs used to treat HIV+ people: 

Source: Despite these advances in the management of HIV, neurocognitive impairments continue to be diagnosed in HIV-infected patients on treatment, even when the viral load is low. Of interest is the observation that deficiencies in brain function in these individuals are marked by a persistent presence of neuroinflammation. Therefore, in this study we investigated whether long-term exposure to ART could contribute to neuroinflammation. Mice were subsequently administered a daily single dose of either Tenofovir disoproxil fumarate or Nevirapine orally for 8 weeks. After treatment, hippocampal tissue was collected from the brains of drug-treated and control mice and the levels of interleukin-1β (IL-1β), tumor necrosis factor-α (TNF-α) and brain-derived neurotrophic factor (BDNF) determined. Our results showed that administration of Tenofovir disoproxil fumarate and Nevirapine induced astrogliosis and up-regulated IL-1β and TNF-α. In addition, we found that Nevirapine reduced the expression of BDNF. Together these results suggest that Nevirapine promotes inflammatory and reduces neuroprotective processes in the hippocampus of mice. Our findings therefore highlight the potential of ART to be harmful to the brain and as such these drugs may contribute to the development of HIV-associated neurocognitive disorder (HAND).

It also has an impact on the replication of mitochondrial DNA. A study found that PrEP-exposed MDMs had decreased mitochondrial mass, increased lipid uptake, and reduced efferocytosis. Another study found that PBMCs from individuals treated with PrEP showed reduced cellular respiration and mitochondrial mass.

This research plus my personal experience has made me reconsider my decision... I love BB and PrEP has given me that for a bit but... I don't know if I'd continue taking it knowing what I know now just to go BB. 

Just needed to vent haha. 

[viking8x6]

This information would seem more relevant with some information about what doses were used in the studies, or better yet links to the actual studies.

That said, side effects can be expected to vary quite a lot across the population; some people (such as yourself) may experience substantial side effects where others experience few or none. That's true for any substance we put into our bodies, of course. So, as with most things in life, "YMMV"

[negboyslut]

some tips to avoid side effects in prep on demand?

[Leather69]

It can cause kidney problems (I take it on demand and only have one kidney (cancer)).. also elevated protein levels are common.

[negboyslut]

On 7/5/2024 at 1:56, Leather69 said:

Puede causar problemas renales (lo tomo a pedido y solo tengo un riñón (cáncer)). También son comunes los niveles elevados de proteína.

What regimen do you take it under? I'm about to start prep and I want to avoid collateral damage as much as possible.

[barewoof]

As for myself I feel very little side effects of taking PreP.

The only things I noticed, is me getting a bit more sensitive to cold weather.

My PreP doctor is pretty surprised that my blood tests  always come back looking like I wouldn't take it. The really only thing that showed up is a VitD deficiency. But I just take some supplements for that and everything is okay now.

[BarebackedBear]

Quote

I naturally began to do some research

 

Oh boy. No offense, but this is the point where you lost me. Unless you're a medical professional with sufficient context, you're just reading pages online.

I have a hard time comparing the risks of PrEP to the risks of being on an HIV treatment regimen even if they do involve the same drugs, because the dosage may be different. You're also comparing someone with the virus to someone without it, which may be an insignificant difference, but maybe not? It's just not apes to apples.

I've been on it since 2016 and never had a problem. As with any drug, side effects are on an individual level. What has been proven is that when used properly, PrEP is the most effective method we have for preventing the spread of HIV. And if you follow the regimen the doctor sets for you, you should be getting tested for everything under the sun every three months, which will spot problems like effects on kidney and liver function early.

I doubt we're going to find out decades from now that PrEP is the new Thalidomide. The original drug used for this had been used to treat the infection for decades, and the new most common drug used is only a slight tweak of the chemical profile of the original which actually lowers the risk of impact on kidney and bone density. 

In short, I trust the medical literature that says it's safe for just about everyone, and does its job. And I'm hesitant to stir up the spectre of side effects for fear that people might choose not to take the drug and put themselves at risk for something much worse. I'll let a person's doctor have that discussion with them.

Edited August 29 by BarebackedBear

[depravedslut]

From my own experience, there are obviously side effects (as for any drug).

I seem to have weaker kidneys (and probably I also don't drink enough). So, after 2 years taking prep daily, my kidneys began to weaken. I had to stop 3 month and it went back to normal. 

Since then, it's the reason why I take it on demand. With no further problem. I don't have sex each week, so no real reason for me to take it daily.

[NYBBGUY58]

I'm not at all surprised by your research. I've taken the meds for years, and they definitely have significant side effects. It's a matter of risk/benefit in choosing to take any medication or supplement, for that matter. I can understand your reluctance to continue.

[ThisBoyBottoms]

I'm one of those who have had side effects too. Besides the sleep issues the OP described (although I also get nightmares), I also had elevated liver enzymes that were not good, so I had to stop PrEP. I go on and off it but still keep on having the liver issues (which can be like the kidney issues others have said). Right now, I'm off PrEP again.

[onlyraw]

I have never taken “PrEP” but over the last 26 years I have taken lots of different meds in my various drug “cocktails” (I guess you could say I am now taking Dovato straight up…. But I digress) - most of them had side effects… some not bad - some really nasty… but from talking to other guys I know that everyone tolerated their meds differently (but it is why every ad got a medication lists lots of possible side effects because they all have them - some common some rare - some more easily tolerated by some and some not)

I know there are several different PrEP meds out there so I would talk to your dr about maybe trying a different one … see if you tolerate one of the others better 

or - just bottom for poz guys who are on meds and undetectable 

but in the end it is your choice

 

[Moose143]

I haven’t had sex in a month.😒 I’ve been off prep. I no longer gi problem. Also morning wood is strong which I had lost. Sleep better so I guess I’ll just have to be careful.

[BootmanLA]

17 hours ago, Moose143 said:

I haven’t had sex in a month.😒 I’ve been off prep. I no longer gi problem. Also morning wood is strong which I had lost. Sleep better so I guess I’ll just have to be careful.

Or go to the "on demand" dosing for PrEP: two tablets taken between 2 and 12 hours prior to sex, one tablet 24 hours after sex, and another 24 hours after that.

Using it that infrequently should cause fewer side effects or at least lower-level ones. 

[gearjanner]

On 5/7/2024 at 8:56 AM, Leather69 said:

It can cause kidney problems (I take it on demand and only have one kidney (cancer)).. also elevated protein levels are common.

After starting daily PrEP, I had my first massive gout attack and now I'm prone to further reoccurancess so have dropped back to on demand.

[J-raw]

On 9/1/2024 at 12:06 AM, BootmanLA said:

Or go to the "on demand" dosing for PrEP: two tablets taken between 2 and 12 hours prior to sex, one tablet 24 hours after sex, and another 24 hours after that.

Using it that infrequently should cause fewer side effects or at least lower-level ones. 

Yeah, for my life style 'On Demand' makes more sense, because I go months without sex sometimes. I was hesitant to take a pill everyday for no reason.