Vasculitis and Acute Pancreatitis

[Support_helps]

Hello I recently achieved the Induction phase with my renal limited vasculitis and was about to start Maintenance when I was hit with acute pancreatitis. Despite various tests including MRI and discontinuing induction meds, the underlying cause of the pancreatitis has the specialists at somewhat of a loss as they try to sort through all the details. I've been off all food and only on IV and water for about 2 weeks now which has seen my Amylase and Lipase drop from the 1660/2884 levels down to 741/754 over the past week. This is good but still too high. Wondering if anyone has had a similar experience and is able to share any information or thoughts, thank you.

[guineapignot]

good morning .

I have just read your post and much of this resonates with my situation. I was diagnosed with Cryoglobulemic Vasculitis in 2019 and have experienced a number of complications including pancreatitis which had me admitted as an emergency to hospital . Like you there was little gained from the scans etc and the drs had little experience of this before. It was not until the Rheumatology consultant got involved did they begin to resolve the situation and got all under control . The reality is Vasculitis is still not understood by many and the disease takes many forms with extreme complications . General medics have really no understanding . I really hope they get your condition under control soon .

[Support_helps in reply to guineapignot]

Thank you. I know have at least 3 specialists involved including GI, Nephrologist and Hematologist. There is an ERCP procedure being discussed but the GI is highlighting a lot of risks with it. The thing is I don't have much pain but after surgery I most certainly will. So my question to the GI today was why don't we try a strict pancreatic/renal diet with no alcohol, fatty food etc and see how that goes. I can't continue on the IV forever but if I can find a suitable diet with minimal pain and discomfort that might be superior to surgery for now. She didn't rule this out and asked me to drink a black coffee today to see how my enzymes are tomorrow. Bottom line is I'm trying to avoid surgery unless I simply have no choice.......interesting days ahead. Thanks for your input!!

[guineapignot in reply to Support_helps]

I understand fully. My , lungs( and respiratory tract ) , kidneys, , muscles , joints , and stomach have suffered greatly . Each time the relevant discipline has consulted with Rheumatology Consultant and every time has been ( so far!!) resolved well under her running lead on it. So many areas have to be looked at as they impact on other treatments . I would gurgle you to seek input from that dept asap ( if they are not already ) involved .

Regards A

[oldtimer2]

Sorry to hear your problems currently. I agree that a rheumatologist or someone with more understanding of vasculitis (renal?) should be involved to think about possible implications from an auto-immune angle. The condition is so rare and so many tests are unhelpful that it's difficult to get expert advice on management. Best of luck!

[Support_helps]

Many thanks!