Autoimmune Pancreatitis

About 3 months ago I was diagnosed with Auto-immune pancreatitis; ECRP biopsy and blood indicators show no sign of cancer. They put a stent in to open my bile duct. I did an 8 week course of prednisone (40mg/day for 4 weeks, then reduce by 5mg each week for the next 7 weeks.) During that time I felt okay except for some prednisone side effects. About a week after the prednisone ended, I started feeling upper belly/back pain, got a CT scan and discovered the pancreas was still angry and swollen and blocking the bile duct. Another stent, more biopsies, blood work etc.; still no indications of cancer. I started on another prednisone course, 1 week each at 40, 30, 20, and 10mg along with a 50mg/day dose of Imuran. I am 2 weeks into it and am feeling dizzy and upper belly/back pain again.

My questions: Is this auto-immune pancreatitis? What else could it be? Should I get a second opinion? This will require me to fly to another doctor/facility.

Thanks so much for the help.

Bob

Welcome Bob. You'll notice that I moved your message to this existing discussion about autoimmune pancreatitis.
- Autoimmune Pancreatitis: https://connect.mayoclinic.org/discussion/autoimmune-pancreatitis-1/

I did this so you can connect with other members like @harper7745 and @hlj.

Bob, it does sounds like you'd benefit from a second opinion. If you'd like to request on appointment at Mayo Clinic, click this link to get started: http://mayocl.in/1mtmR63

I'm glad that cancer has been ruled out.

I was diagnosed with autoimmune pancreatitis in January 2022. I presented with jaundice, obstructed biliary, mass in head of pancreas and large weight loss as well as extremely high blood sugar. I have been type 2 diabetic for about 7 years. Prednisone rapidly corrected symptoms but when I taper off I relapse. I also had a biliary stent placed and multiple biopsies. After relapsing a couple of times my Dr. started me on Mercaptopurine 6 after testing to make sure my liver would metabolize it. Unfortunately even though tests showed I would, the MP6 caused liver toxicity. After recovering from that I was referred to Oncology to try Rituximab infusions. I did a series of 4 infusions in Sept/Oct 2022. So far I have not relapsed. The oncologist is repeating the 4 infusions in late March/April 2023. My question is whether anyone knows if the Rituximab must be done every 6 months indefinitely or if after this second infusion I will just wait to see how I do long term? Any currect research info would be much appreciated.

@ldhamh Gee, I’m sorry I didn’t see your question until today. You’re asking about the need for long-term rituximab. I posted the link about a study done on rituximab and it seems to say that it does need to be continued in order to stay in remission.
https://pubmed.ncbi.nlm.nih.gov/35041334/
Rituxan only worked for 18 months for my autoimmune disease, but for others, it continues to work well.
Here is another article:
https://journals.lww.com/pancreasjournal/Abstract/2021/11000/Rituximab_as_Maintenance_Therapy_in_Type_1.6.aspx#:~:text=Rituximab%20(RTX)%20has%20been%20proposed,patients%20with%20type%201%20AIP.
Have you and your doctors had any discussions about the long term use of rituxan?

Thanks @becsbuddy for your response and the article links. That info is what I'm finding too. My gastroenterologist and oncologist are working together. The frustrating part is that there doesn't seem to be an "approved" method for treatment as far as how many infusions, dosage, etc. Each article my wife and I read is somewhat different. I do believe Rituximab works as I have actually been symptom free for several months which is amazing. I know Mayo has done some studies but I can't find anything with specific study details. I have seen the 2019 youtube video describing their study but would love to know if they have done anything else.

@ldhamh I’m sorry to tell you that most “newer” autoimmune diseases don’t have an approved treatment. The doctor told me that it’s all trial and error. Darn!
Have you tried looking on Google Scholar? It has more scholarly/scientific articles.
I’m not much help, but I’ll keep asking around

I also was diagnosed with CP, did 47 days of Prednisone and have an MRI scheduled for April to see if it shrunk the benign mass on the head of my pancreas. According to my GI, after all my other testing, if the mass shows improvement...this confirms an autoimmune diagnosis. Trying to determine what caused the mass has been difficult as my GI is not forthcoming with alot of information or in answering my questions. The diagnosis is important because it determines treatment and if the body can attack the pancreas, it could also attack other organs as well. Good luck to you and hope you get answers and feel better soon.