Hi and welcome back to this six-part blog series about my 2023 – 2024 journey with autoimmune pancreatitis. Today is part five, but if you missed any previous posts, be sure to read them here first!
- Part 1: My first hospital stay, what causes pancreatitis, my pancreatitis symptoms and off-the-charts lipase levels, and my in-hospital treatment plan.
- Part 2: My second hospital stay, testing and procedures at the hospital, my abdominal MRI, starting a low-fat diet and digestive enzymes.
- Part 3: My Third Hospitalization, a Specialty Endoscopy, and Starting Prednisone
- Part 4: Living with Autoimmune Pancreatitis: Three Prednisone Tapers, Declining Azathioprine, and a Possible Alternative Diagnosis?
In part four, we left off this story with my alarm bells ringing. The fact that I continued to fail my prednisone tapers was a red flag that something else was likely triggering my autoimmune pancreatitis.
At this point, I was quite disappointed with my gastroenterologist who was constantly pushing me to start azathioprine instead of taking the time to really investigate the situation. Unfortunately, it’s common for physicians nowadays (in gastroenterology and otherwise) to nuke the body with medications and hope something works. Sadly, healthcare is more about treating the symptoms rather than the root problem.
Researching Autoimmune Pancreatitis
Well, I wasn’t having it. I firmly told my GI no to azathioprine, and took research into my own hands. And, I found some pretty interesting stuff.
Strange Doctor’s Note in MyChart
One reason why I believed something deeper was at play than Type 2 autoimmune pancreatitis was a strange doctor’s note my GI left in the transcription of my endoscopic ultrasound (EUS) I had in December 2023.
The note said, “Findings were concerning for autoimmune pancreatitis. Biopsies showed small fragments of pancreatic tissue with acute inflammation. Positive for IgG plus plasma cells. However, no IgG4 plus plasma cells noted. So these findings are not typical of autoimmune pancreatitis.”
After researching what this meant, I understood that he was saying that my pancreas showed signs of an autoimmune reaction, but might not actually be autoimmune pancreatitis.
What else could cause an autoimmune reaction in the pancreas? I wondered. Well, certain medications can. And there was one medication I was on that we hadn’t addressed: Entyvio.
Researching Entyvio and Pancreatitis
I remembered what my hospital team had told me back at my very first visit: that, sometimes, pancreatitis is drug-induced. Well, when my pancreatitis started, I’d stopped pretty much all my supplements—including my vitamins, probiotics, and prebiotics—to reduce stress on my digestive system. I even stopped my birth control pill in case that was the culprit. (So, at this point in May 2024, I was taking oral vancomycin for my PSC, prednisone, vitamin D, iron, and Entyvio for my ulcerative colitis).
I just knew something else was going on instead of just Type 2 AIP. I’d been dealing with insane pain levels for five months and been on high doses of prednisone for most of that time; it was unusual that I wasn’t feeling better yet.
So, I researched links between Entyvio and pancreatitis. What I found was shocking.
The Rare Link Between Entyvio and Pancreatitis
Though extremely rare, Entyvio can cause pancreatitis. Since Entyvio’s approval in 2014, 196 patients have been reported to have had pancreatitis while on Entyvio. As I mentioned in part 1, pancreatitis attacks most often happen to patients within their first few infusions—not after being on the medication for over 5 years like I was! However, this doesn’t mean that’s not possible.
Entyvio Prescribing Information
I continued down this rabbit hole linking Entyvio with pancreatitis. When I pulled up Entyvio’s prescribing information online, I found some things that concerned me:
- “Elevated liver numbers and liver injury: There have been reports of elevations of transaminase (ALT or AST) and/or bilirubin in patients receiving Entyvio. In general, the combination of transaminase elevations and elevated bilirubin without evidence of obstruction is generally recognized as an important predictor of severe liver injury that may lead to death or the need for a liver transplant in some patients. Entyvio should be discontinued in patients with jaundice or other evidence of significant liver injury.” – 5.4 Warnings and Precautions
- “Hepatitis: In UC Trials I and II and CD Trials I and III, three patients reported serious adverse reactions of hepatitis, manifested as elevated transaminases with or without elevated bilirubin and symptoms consistent with hepatitis (e.g., malaise, nausea, vomiting, abdominal pain, anorexia). These adverse reactions occurred following two to five ENTYVIO doses; however, based on case report information it is unclear if the reactions indicated drug-induced or autoimmune etiology. All patients recovered following discontinuation of therapy with some requiring corticosteroid treatment.” – 6.1 Clinical Trials Experience
- “Liver Problems. Liver problems can happen in people who receive ENTYVIO. Tell your healthcare provider right away if you have any of the following symptoms: tiredness, loss of appetite, pain on the right side of your abdomen, dark urine, or yellowing of the skin and eyes (jaundice).” – Medication Guide
I had many of these symptoms, including:
- Elevated ALT: I’d had normal liver numbers for years—ever since starting oral vancomycin for my PSC. So I was flabbergasted when my ALT was high at 72 IU/L (normal range is between 0 – 31 IU/L). This was a massive red flag to me that something was wrong. My AST and alkaline phosphatase were slightly higher than they usually are, but still safely within normal range.
- Malaise and fatigue
- Nausea
- Abdominal pain
- Loss of appetite
- Pain on right side of my abdomen (also known as right upper quadrant (RUQ) pain)
I promptly scheduled a phone call with one of my GIs, my liver specialist. She agreed that something deeper may be at play. And, she mentioned that it could possibly be Entyvio causing an immune response in my pancreas. My next Entyvio infusion was coming up that week, and she advised me to postpone it so that we could do more research and decide whether I should continue Entyvio.
The Science Behind Why Entyvio Might Cause Pancreatitis
There’s an interesting theory that could explain why Entyvio may cause autoimmune pancreatitis. To explain the theory, let me first describe how Entyvio works.
We know that IBD is caused when the immune system attacks itself by sending too many white blood cells to the GI tract; this is what causes inflammation in the gut.
Entyvio works by blocking the white blood cells from entering the GI tract. This prevents gut inflammation.
The theory is this: Entyvio may be effective in preventing white blood cells from going to the gut, but this may alter where these white blood cells go. If the white blood cells are blocked from attacking the gut, they may reroute and attack another nearby organ–like the pancreas.
You can read more about this theory in this article here.
Unfortunately, there’s no test you can take to figure out whether Entyvio is the cause of autoimmune pancreatitis. There’s no way to truly know. The best thing to do is to stop Entyvio and see if your symptoms improve.
My Emotional Reaction to Potentially Stopping Entyvio
All the pieces came together.
My GI’s strange note.
My gut instinct not to take azathioprine.
My multiple failed prednisone tapers.
The link between Entyvio and pancreatitis.
I had a feeling this was it. I had a feeling this was the reason why I couldn’t get well.
And let me tell you, this was emotional. Entyvio was by far the best drug I’d ever been on for my ulcerative colitis. It had given me 5 years of the deepest remission I’d ever been in. And the thought of stopping it scared the crap out of me. What if I was wrong? What if stopping Entyvio sends me into a flare we can’t get controlled? Am I being shortsighted potentially stopping Entyvio instead of just taking the azathiprine?
After pondering these questions, weighing my options, praying about it, and discussing the pros and cons with my husband and others I trust, I decided to pull the trigger. I was going to stop Entyvio. And I’d done my research too, already choosing which biologic I’d want to replace it with—Stelara. (I’ll go more into Stelara in my sixth blog post).
My Physical Reaction to Stopping Entyvio
My liver specialist agreed with my decision. And thankfully, my local GI (whose Entyvio orders were under) didn’t put up a fight. He left the decision up to me, and agreed that Stelara would be a great replacement.
I had my final Entyvio infusion on April 30, 2024. The craziest part? Eight weeks after stopping, when I would have been due for my next infusion, I started to feel better. Like, almost normal. The pancreatitis pains slowly subsided, and I was able to start another prednisone taper.
The only downside is that one of my fears did come true. My ulcerative colitis flared. Due to insurance, there was a two week delay in starting Stelara. And that’s all the time it took for my ulcerative colitis to flare. Because of this, I did have to increase my prednisone yet again (I had made it all the way down to 15mg!). And although this sucked, I was grateful the reason this time was to help manage my ulcerative colitis and not due to pancreatitis.
So now, my GI and I were able to work on getting my ulcerative colitis under control instead of trying to manage this strange autoimmune-related pancreatitis. One problem down, one to go!
Reflecting on My Decision to Stop Entyvio
Despite the fact that I felt INSANELY better after stopping Entyvio, my local GI didn’t truly believe it was Entyvio that caused my pancreatitis. In clinic, he brushed it off, saying, “It could be. It’s hard to say.”
And, yes, of course it’s hard to know beyond a shadow of a doubt. But I believe that listening to the patient experience is critical; and I knew my body was feeling much healthier after stopping Entyvio.
So, to this day, I believe it was Entyvio that caused an autoimmune-related pancreatitis. I believe that Entyvio was causing my white blood cells to reroute and attack my pancreas, which could explain why my EUS biopsies showed signs of an autoimmune attack that didn’t quite line up with typical type 2 autoimmune pancreatitis.
And even though stopping Entyvio put me in a UC flare, I’m confident I made the right decision in declining azathioprine. I shudder at the thought of taking azathioprine while staying on Entyvio–the true culprit causing my pancreatitis.
Ultimately, I believe the gut instinct is strong. It’s an instinct given to you for a reason. If you ever have a feeling that you should stop a medication, start a drug, do a procedure, etc, listen to it.
A Note About Entyvio
The final thing I want to say is that, if you’re on Entyvio or thinking about starting Entyvio, I don’t want this blog post to scare you.
Pancreatitis caused by Entyvio is incredibly rare. And I’m not hating on Entyvio at all. It is an incredible medication that gave me many years of remission, adventures, and happy pain-free days. I will look on my days on Entyvio fondly; but like some things in life, it was meant to serve during a certain season.
If you and your doctor have decided Entyvio is the right choice for you, I’m hopeful that it brings you the deep remission it brought me. If you’re afraid of developing pancreatitis from it, know that it’s extremely rare. Plus, now you know signs and symptoms to look out for! If you ever feel similar symptoms, have elevated lipase, or have an abnormal CT scan or EUS, you can consider stopping Entyvio long before the idea even crossed my mind.
Stay Tuned for Part 6
In my sixth and final part of this blog series, I’m going to share why I chose Stelara as my replacement biologic. I’ll also share how my infusion and first self-injection went.
Want more information on autoimmune pancreatitis, my symptoms, and this crazy diagnosis journey? I’m breaking my Instagram hiatus to share lots more info about this lengthy health update. Find me on Instagram here.
Thank you for reading, and chat more soon!
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