Seeking Personal Truvada Stories
I could use your help
There has been very little coverage of the Truvada disaster in the media, with the exception of July 2023’s NYT piece. Indeed, that piece has been the only coverage the Truvada lawsuits have seen in the mainstream media since Jennifer Kastner first broke the story with Tyreese Buchanan’s bravely going public with his heartbreaking account:
There are many stories of the devastating side effects caused by Truvada to be found within the lawsuits themselves, as well as on Reddit. However, I am seeking personal stories in any format, but especially video.
So I need your help—please keep an eye out for any personal stories and/or people that might be willing to discuss their experiences on Truvada and related drugs, and leave any tips you have in the comments or by replying via email to this post. Thank you in advance!
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Here's another post from someone else from a few years ago:
"I started PreP approx 2 yrs ago but I don’t take it regularly I.e. I dose up for vacations and weeks like Folsom etc, taking the meds for 7 days before events/sex, during (could be a few weeks of off and on sex, and then 7 days post last raw encounter. I am 100% top.
Blood work done every 4-6 months. Sometimes more frequently. Each time there was slight elevated liver enzymes. Nothing was made of them as kidney and bone markers were fine. Just told it was from having a few beers over weekend. Though I drink not so much.
Ever before starting PreP I had unknown cause IBS. Attending a gastroenterologist and had a recent liver and gall bladder ultrasound as part of the IBS checks. out of the blue last week he told me that the ultrasound came back with severe fatty liver evident.
going for a fibroscan this week to see level of liver impact/disease. I asked what he thought caused it. But he said he didn’t know. Then I start looking into Truvada/PreP and suddenly see now that elevated liver enzymes, fatty liver disease and NASH are known side effects of these drugs.
During all my discussions with true PreP clinic it was never mentioned as a risk - it was all about kidneys and bone. "
There's a forum for sexually active guys I like to jump in and peruse from time to time because many of the guys are on PrEP, and some interesting things show up now and then. The forum moderators have a 'no denialist' policy so you basically can't say anything negatives around 'HIV'. Someone recently talked about RFK Jr.'s The Real Anthony Fauci and got a warning from the moderators.
But I noticed this post from an anonymous 'guest' profile recently:
QUOTE:
"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.
END QUOTE.
I found the paper he refers to: https://pubmed.ncbi.nlm.nih.gov/30336207
"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."
The language is so deceptive. You get the impression it's 'HIV' that's causing 'neurocognitive impairments' but it's the drugs.
So unfortunately I wouldn't be able to put you in contact with that person considering the anonymous profile. One of the moderators made sure to follow up with this post and do the 'well, most people probably don't have these issues' type of response.