PreP and Liver Disease (Fatty Liver or NASH)

[Leathercouple]

Never posted before but like the discussions and dialogue on this site. 
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. 
 

Really worried now that I have damaged my liver. What are peoples experiences? Could it be a coincidence and nothing to do with the PreP or ?

concerned Irish! 

[Leathercouple]

Any info/experience out there on this ? 

[Guest]

Good thing you started this topic.

People should be well informed to make a balanced decision in these things.  

[Guest]

I also had elevated liver enzymes on truvada and once I stopped taking it the numbers went back to normal 

now I only fuck raw no meds 

I won’t take a med unless I have to 

Edited April 28, 2021 by PiginCalif

[Leathercouple]

I sort of expected lots of input/discussion/experiences  on this topic. A week later... why so quiet?

[BootmanLA]

17 hours ago, Leathercouple said:

I sort of expected lots of input/discussion/experiences  on this topic. A week later... why so quiet?

My guess (and it's just a guess) is that this is an uncommon side effect with which very few, if any, members  have had any experience. 

[Leathercouple]

It sounds like it! I’m wondering if it’s not the PreP doing this to my liver.... doesn’t seem like this happens a lot. 

[BootmanLA]

1 hour ago, Leathercouple said:

It sounds like it! I’m wondering if it’s not the PreP doing this to my liver.... doesn’t seem like this happens a lot. 

It may or may not be - just because it may (or may not) be a rare side effect doesn't mean it's not happening to you. Or it may be something else entirely.

It's the kind of thing to discuss with your doctor(s). In my case, my HIV specialist is also my primary care doctor, and he refers me to other specialists as necessary (nephrologist, urologist, etc.). While you are on PrEP, not getting HIV treatment, you might want to consult with an HIV specialist (the active ingredients in PrEP are also used for HIV treatment, so they're likely to have a deeper understanding of them than a generalist) and get his or her recommendations for further testing.

I decided for my own info to do some research: assuming yours is not caused by excessive alcohol, what you have is referred to as non-alcoholic fatty liver disease, or NAFLD. By some estimates, 25-30% of people in the US and Europe have NAFLD to some degree, probably because we have a richer diet than poorer places. Less is known about the non-alcohol version, but factors that can lead towards it include obesity, high blood sugar, insulin resistance, and high levels of fat in your blood. (Obesity doesn't necessarily mean 350-400 lbs; it's anyone with a BMI over 30; and even a BMI between 25 and 30 may contribute some to this.) So you may want to monitor your blood sugar and/or moderate your intake of fats and sugars (which is a good thing health wise in general). I'd have those things looked into - which are a more common cause of NAFLD - before necessarily blaming PrEP. 

[Leathercouple]

Thank you for this detailed response. 
I totally agree with your assessment. 
I am a slim guy but suffered for high cholesterol for years. 
Not diabetic or obese etc

Ive asked my doctor for blood test results to period before I started on prep. I want to see if any signals there before prep. 
 

I’ve started a low fat/low sugar diet. Will see if that helps. 
 

I appreciate the response and info. Thank you.  

[BootmanLA]

1 hour ago, Leathercouple said:

Thank you for this detailed response. 
I totally agree with your assessment. 
I am a slim guy but suffered for high cholesterol for years. 
Not diabetic or obese etc

Ive asked my doctor for blood test results to period before I started on prep. I want to see if any signals there before prep. 
 

I’ve started a low fat/low sugar diet. Will see if that helps. 
 

I appreciate the response and info. Thank you.  

You're welcome - it would be curious to see if your liver functions were abnormal before PrEP or if it started afterward. 

[Dee82]

I also have this same issue.  I'm glad someone brought this up.  I remember my doctor telling me I needed to get some scans to see why my liver was fatty.  I used to take prep daily for a few years as well.  I also had IBS and all sorts of issues after being on PreP for awhile.  Doctor didn't know why I had this issue but suggested I change diet.  I did it for awhile, but It was still showing.  I stopped PreP, I don't know if it stopped the fatty liver issue or not since I haven't had my physical/blood work this year yet.

[Guest hungandmean]

51 minutes ago, Dee82 said:

I also have this same issue.  I'm glad someone brought this up.  I remember my doctor telling me I needed to get some scans to see why my liver was fatty.  I used to take prep daily for a few years as well.  I also had IBS and all sorts of issues after being on PreP for awhile.  Doctor didn't know why I had this issue but suggested I change diet.  I did it for awhile, but It was still showing.  I stopped PreP, I don't know if it stopped the fatty liver issue or not since I haven't had my physical/blood work this year yet.

FLD will go away if you stop the thing that is damaging it (alcohol, medication, being the most common) so you should be okay. 

If you have liver issues you can't explain they could be linked to herbal supplments, or Zantac / Ranitidine as the drug was known to cause liver drama. It's a pretty common OTC drug for heart burn. 

[Leathercouple]

12 hours ago, hungandmean said:

FLD will go away if you stop the thing that is damaging it (alcohol, medication, being the most common) so you should be okay. 

If you have liver issues you can't explain they could be linked to herbal supplments, or Zantac / Ranitidine as the drug was known to cause liver drama. It's a pretty common OTC drug for heart burn. 

Problem is then I can’t take PreP so no raw fucking for me. 

[barefootboy]

I also have FLD.  Based on the responses here, mine may be a combination of drinking, Zantac (which I stopped), and PrEP. I also had a liver ultrasound just this week and am waiting on the doctor to call me. I understand what you are experiencing. 

[Leathercouple]

It definitely seems to be an issue with these meds and not necessarily joined the dots thinking by clinicians. 
I will have to stop PreP now as it’s impacting my liver a lot.