Vasculitis in the pancreas?

[Sandalsforever]

Has anyone with GPA or MPA been diagnosed with pancreatic issues due to vasculitis? Hubby had has GPA for 15 years, kidney transplant and sinus involvement and most often in remission until now. He has lost 40 pounds( not trying) and must take enzymes to digest food with a very bland diet. All this happened in the last 9 months and we recently found out he is ANCA positive and has begins stages of blood cancer. Doctors think his kidney is ok, and sinuses are too but he is definitely in a flare. Was researching on line and 5-10% of MPA/GPA people have pancreas involvement. Was wondering - will it get better or just not get worse after treatment if it is vasculitis attacking the pancreas. Hubby just had Rutuxan 1 treatment will have another one in a month.

[zoe69 Administrator Volunteer Vasculitis UK]

I am so sorry to hear about your husband. I don't have any personal experience to share, but if the issues in the pancreas are caused by inflammation, getting the inflammation under control is the first step.As GPA is a small vessel vasculitis and the pancreas get blood supply from aortas, do they think there's inflammation in the large blood vessels?

I hope the treatment will be effective and he will start getting better.

[Sandalsforever in reply to zoe69]

His gastroenterologist doesn’t think they’re related, but he doesn’t know what vasculitis is. We have moved to a different state recently and waiting to see a new rheumatologist. he doesn’t have an appointment for four more months, but hopefully with the rutuxan treatments that his kidney doctor and oncologist are giving him it will help. With this disease it’s so hard to find a doctor for all of the different organs, vasculitis is so rare that sometimes it’s hard to pinpoint it. His gastroenterologist just thinks he has EPI but it came on so suddenly that his pancreas stopped working they say it’s not cancerous so they’re not even looking into the vasculitis. Fingers crossed that the Rutuxan will help it.

[zoe69 Administrator Volunteer Vasculitis UK in reply to Sandalsforever]

I hope it will. It is difficult when more disciplines are involved. Here in the UK, the best is to have a multidisciplinary team meeting and discuss the patient, but I assume your system is different. Not that every hospital here has MDTs

[Atimlin_1]

Hello my specialist recently told me that a long term consequence of cyclophosphamide could be impact to pancreas. Unfortunately that's all I know. Best wishes for your husbands recovery!

[Sandalsforever in reply to Atimlin_1]

Thanks, he is on the cellcept and cyclosporine which he needs for his kidney transplant. But I will look into that never thought that the drug could cause it but they are strong drugs, and he’s been taking them for many years.

[Atimlin_1]

Wish you very good luck with it.

[Sandalsforever]

I did look at the drug list and cellcept can causes lymphoma which is the cancer he has and other immunosuppressants can affect the pancreas, I would not be surprised if this one does too. At least we have more information - hopefully a doctor will look at it.

[Sprocker16]

Hi. My son was diagnosed two years ago with EGPA, because he ended up in intensive care with lung issues. He also had pancreatitis during this time (and a few other problems). When they figured out what was wrong, they treated him with high dose Prednisolone and rituximab and he hasn’t had pancreatic problems since. I hope your husband gets better soon!

[Sandalsforever in reply to Sprocker16]

That is good news! I hope my husband gets the same results! Unfortunately he has had the pancreatic issues for about 2 years now, don’t know how mych permanent damage has been done.

[Sandalsforever in reply to Sprocker16]

do you know how much prednisone they gave him?