Exocrine Pancreatic Insufficiency (EPI) | Diarrhea

[ses88]

Hi All,

I've been POZ since 2016 and been on the newest latest and greatest drugs.  First Descovy / Tivicay and Biktarvy since 2018.  I have had GI issues (https://www.identifyepi.com/what-is-epi/epi-symptoms) for the past year and a half and finally had a GI Doc test fecal elastase.  This test revealed that I have severe exocrine pancreatic insufficiency as my result is 84.  I've been reading that this diagnosis is common with the POZ community who are undetectable and on ARV's.  Here's an article to assert this claim:

https://pubmed.ncbi.nlm.nih.gov/28838283/

I feel betrayed by these "safe" drugs.  Having an HIV diagnosis and required to take one pill a day for the rest of my life was no big deal for me in 2016.  Now, I am required to take pancreatic enzyme replacement therapy pills (CREON) with every single meal and snack. 

Does anyone else have the diagnosis of EPI?  If you have GI issues ...mostly floating stools, diarrhea and or loose stools make sure your primary care Dr. tests fecal elastase. 

I am a very healthy male who hardly drinks , doesn't smoke and hits up the gym 3-5 times a week. 

Feeling pretty down about this and hoping to find some others who have this diagnosis also in our community as my HIV Dr.'s claim that this is common..but not too common. 

Any "pro-tips" from long term survivors?  Thanks for this forum as it's been a huge support network! 

[Jim Allen]

I'm sorry to hear about the EPI, and I hope things are more manageable with the treatment.

Please keep us posted on how you get on with managing the EPI as others may have experienced it, and in any case, this thread will also help others in the future.

I feel betrayed by these "safe" drugs. Having an HIV diagnosis and required to take one pill a day for the rest of my life was no big deal for me in 2016. Now, I am required to take pancreatic enzyme replacement therapy pills (CREON) with every single meal and snack.

I'm not entirely sure why you feel betrayed or the required part? Do you feel the ART caused this or should have prevented EPI?

Generally speaking, there are of course health issues we are more prone to as a group or issues we might develop earlier in life. Were a pretty diverse group, though.

Thankfully, HIV meds for me did what they said they would and allowed me to live long enough to have other health issues. In my case, it's mostly bad luck, genetics and shit happening, aka life.

[harleymc]

It was notable from the article cited that "We could, however, not find a correlation between gastrointestinal symptoms and the presence of EPI. "


So maybe EPI is irrelevant to your GI problems.  Have you discussed with your doctor what the implications are?

[ses88]

Hi Jim and HarleyMc,

My EPI is caused by my pancreas being inflamed as a result of Biktarvy.  Biktarvy is known to cause pancreatitis and in my case appears as though it's turning into a potential chronic pancreatitis condition.  Biktarvy is the silent killer of my pancreas as I have been taking it since 2018, and prior to that Tivicay and Descovy.  My Dr.'s and pharmacist's say that my condition is very rare and hardly ever see cases of this ..however I am more of an investigator regarding my health than most.  Perhaps this can help others who are experiencing this type of pain and discomfort. 

I followed the diarrhea to a low pancreatic fecal elastase test to an MRI which shows my pancreas looks like I have chronic pancreatitis.  I have an endoscopic ultrasound scheduled in the near future where a Dr. will measure the amount of scaring the Biktarvy caused to my pancreas and tell me how long it'll likely be before I develop diabetes or pancreatic cancer as a worst case scenario.  You cannot repair your Pancreas like you can your liver...once it's shot..it's shot.  Stem cell transplants of islet and duct seem to be emerging as a potential help...but...this is early in development. 

I am shocked as I have had zero pain in my pancreas region and the only sign was constant smelly floating stools that were not being absorbed. 

In summary my goal is to caution others who are taking Biktarvy OR the ingredients in Biktarvy ( FTC, TAF - most specifically TAF-  Tenofovir - Alafenamide or Disoproxil ) or taking Descovy or Truvada for PREP.  I've been destroying my pancreas since I started Descovy / Tivicay when I was first treated & diagnosed in 2016.( treated within 4 weeks of infection) ..and then switched to Biktarvy which continued to destroy my pancreas silently.  My CD4 and VL has always been amazing...1200 plus for CD4 ( 1700 - off the charts recently) and VL not detected since 3 weeks after treatment in 2016.  I do not have a history of alcohol or drug abuse and have always been a low key social drinker my entire life.  I am no longer drinking any alcohol and have switched to a "non-nuke" medication ...JULUCA with hopes that this will be less toxic on my pancreas and I can hopefully restore a normal life without a life long chronic and painful pancreatitis situation.

I really hope this helps others switch to a less toxic regimen and away from Biktarvy, Descovy and Truvada and to learn from me.  PLEASE.

I am 1000% grateful for the medications that have allowed us to live our best lives with this terrible virus...however....we need our world scientists and drug manufacture's to ensure safety and awareness of these issues so you don't end up like me. 

LMK if anyone has any questions and thanks for listening to me and my story...Peace!

[ses88]

Hi All,

I wanted to put out a PSA for those of us taking any of the following:  Biktarvy, Descovy and Truvada.

This is my experience and my goal is to help as many folks out there be aware of what these drugs have done to me and most specifically my pancreas. 

Biktarvy has been poison for my pancreas.  I've been taking it since 2018 and prior to that Descovy.  The "nukes" in Biktarvy = Tenofovir Alafenamide and Emtricitabine have been extremely toxic on my Pancreatic function and I don't want this mistake to happen to anyone.  I've had diarrhea since 2020...and after multiple tests and chasing my literal tail in circles have discovered that the diarrhea is coming from exocrine pancreatic insufficiency.  This means the ingredients in Biktarvy (and Descovy) have inflamed my pancreas so much that I no longer produce enough digestive enzymes to break down the food I eat.  Consequently, I have to take MULTIPLE (6-12) digestive enzyme pills with EVERY meal or protein shake (for the rest of my life) to allow my body to absorb the food I eat.  Creon costs approximately $2100.00 per month and it's made from the pancreas of dead pigs.
 This is what I have to take to absorb my food!  WOW Right? 

My pancreas is so inflamed that I've developed CHRONIC (Life long) PANCREATITIS.  This condition is worse than HIV in the sense that it makes you feel like your stomach / intestines are on FIRE and you cannot drink any alcohol, eat spicy or fatty foods and have a VERY BLAND diet.  This chronic inflammation from the drugs in Biktarvy and Descovy and their effects on my pancreas have slowly destroyed my pancreatic function and I am now at a much higher risk for developing diabetes and pancreatic cancer. 

There needs to be an urgent push to continue our global efforts to hold drug companies responsible for the damage they are causing and to continue to pursue a cure with great intensity.  Don't get me wrong..I am SOOOOO Grateful that we have drugs to save our lives ...however ....these drugs are touted by my Dr's and pharmacist's as SAFE when they ARE NOT SAFE. 

I highly recommend switching to a two drug regimen and eliminating TENOFOVIR in all forms from your regimen as well as any "nukes".  I've been told by my Dr. that the NUKES are what's causing this and they immediately switched me to a two drug regimen - JULUCA - which I hope and pray works well for me.

Thank goodness we have so many choices of medications to take.  I am hopeful that my message can cause more awareness of what's going on with Biktarvy, Descovy and Truvada and how Gilead needs to take their BILLIONS in revenue and come up with drugs that do not destroy your organs while saving us from this deadly virus. 

Thanks for hearing me out and best of luck to all of you and your medical challenges as we navigate these waters together. 

Peace and Love from So. Cal

[Tonny2]

          ojo.        Hi there!…I’m sorry you had to go through this situation. Question: didn’t you get any symptoms of symptoms ancreatitis before it became “crony c pancreatitis”?…we have the remember that we all react differently to the meds, in my case, I had three different episodes of pancreatitis between 2000-2005. I was taking kale tea, agenerase and efavirenz. I got pancreatitis from the PI kale tea. I know somebody who has been taking kaletra for 15 years and no problems at all, also, I know so many people taking my “nukes” even for longer years and they haven’t had pancreatitis. Like I said, we all get different side effects or none at all…I’m sorry you have to deal with your pancreatic problems, but I wonder if you didn’t have any symptoms of pancreatitis, because there is treatment for that…my treatments were, just n each episodes of pancreatitis, 15 days no food, no drinks by mouth, just IV hydration…no digestive problems to report till now, not even when I got pancreatitis, just lost of pain in my abdomen…I’ve taking the same treatment for 15 years, darynavir/norvir, etraverine and Raltegravir, and I haven’t had any problems, thankfully…I hope you get a second opinion about your condition and find a better treatment for your condition…good luck and, please keep us posted…hugs

[ses88]

Hi Tonny2- unfortunately I didn't get any pancreatitis type events.  I developed chronic floating stools / unusual movements in 2020 ish....but...when you read about HIV and HIV drugs diarrhea / unusual stools is a common reported side effect and I didn't put too much thought into it.  Just thought I had a gut infection and or parasite infection and that it would clear.  That never happened and in the spring of this year - 2022- I decided to get to the bottom of it. 

I'll continue to pursue this and hopefully I can manage this without it turning into a disabling condition.  Thanks for the message and stay well

[forrest]

Hi Ses88

I know it's been almost a year since you posted this but I was curious if you have found any new information or what your journey has been.  I am going through this right now myself. I have been on Biktarvy since around 2017 I think?  (whenever it pretty much first came out) and was on Tivicay and Descovy prior - just like you.  I also have not abused alcohol, take care of myself, etc. etc.  My story is very much like yours.  I don't have chronic pancreatitis but have been diagnosed with EPI after a two year long journey.  I am on ZenPep vs Creon as I didn't feel Creon was helping but I also am not sure if ZenPep is helping much.  I've been undetectable ever since I went on meds (2013) and my CD4 is 1334 (just got it back today in fact as I was just tested). 

I don't feel my drs are very knowledgable of hiv and they are at Stanford!  I'm getting really frustrated so am curious as to what it's been like for you over the past year.  Thanks a lot for any update you can provide!