Lupus Pancreatitis

A little while ago there was a question about pancreatitis on this site. Since I have personal experience with the condition, I decided to blog about it. Below is a copy of the post I put up on my own website. The message I hope to convey is how serious pancreatitis can be and how essential it is to seek immediate, expert care.

Lupus Pancreatitis

Pancreatitis, whether related to lupus or not, is a very serious development and requires immediate medical attention. During an attack, the pancreas starts to digest itself because certain pancreatic enzymes have been released prematurely. These enzymes usually break down food in the small intestine but, since they have been put to work in the wrong place, they instead begin to break down the pancreas. The situation can quickly become life-threatening.

A doctor diagnoses pancreatitis by reviewing blood tests and abdominal scans. The reason the attack occurred, however, may not be easy to discover. Without knowing the cause, it will be difficult to design an appropriate treatment plan.

If pancreatitis is related to lupus, a specific protocol is recommended. In the medical journal "Clinical and Developmental Immunology", outcomes for groups of patients with lupus pancreatitis are compared. Those patients who are treated promptly and aggressively fare far better than patients who do not receive this level of care. (See: "Clinical and Developmental Immunology, Systemic Lupus Erythemtaosus-Related Acute Pancreatitis: A Cohort from South China".)

Pancreatitis occurs for a variety of reasons. In some people, the condition may be a result of lifestyle--excess consumption of alcohol is generally included in this category. For other people, medication may precipitate an attack. Azathioprine and steroids are often suspected antagonists in this scenario. Evidence about the link between pancreatitis and these two drugs is not uniformly persuasive; while azathioprine clearly may cause pancreatitis in some people, steroids are another matter. There is disagreement about whether steroid-induced pancreatitis actually exists.

Estimates for the risk of developing pancreatitis while on azathioprine vary. According to a 2003 study published in the "American Journal of Gastroenterology", patients on azathioprine ran a 0.4% increased risk of developing pancreatitis. Another medical journal, "Annals of Gastroenterology", reported that patients on azathioprine (or mercaptopurine, into which azathioprine is converted by the liver) who had inflammatory bowel disease stood a 3.1% increased risk of developing pancreatitis. So, if someone is on azathioprine therapy and pancreatitis develops, suspicion will first fall on the medicine as culprit. The drug will be discontinued and an alternate medication prescribed.

As for steroids and pancreatitis: there is growing disagreement about this relationship. The Lupus Foundation describes steroid-induced pancreatitis, and indicates that the cessation of steroid therapy is the remedy for this condition. However, a recent article in "Clinical and Developmental Immunology" states: "Increasingly accumulated evidence showed that steroids do not trigger acute pancreatitis or cause increased mortality" in lupus patients. The lack of unanimity about the steroid/pancreatitis link increases the element of speculation in the diagnosis and treatment of pancreatitis.

When a situation exists where lupus has evidently caused pancreatitis, the way forward is clear for the doctor. High-dose steroids are the standard remedy. This type of pancreatitis is called idiopathic lupus pancreatitis and is a very serious condition; it needs to be treated by experts in lupus care.

Since idiopathic lupus pancreatitis is thought to be rare, it can easily be overlooked by a physician who is not experienced in treating lupus. The complexity of treatment decisions for a clinician increases if the lupus patient with pancreatitis is already on steroid therapy. Now the doctor has to figure out whether steroid therapy is appropriate or will make matters worse. The critical question has to be answered: Did steroids cause pancreatitis or will steroids cure pancreatitis?

An incident that occurred in a Slovenian hospital lllustrates this point. A 33-year-old man evidently had pancreatitis. He also had lupus. Idiopathic lupus pancreatitis was suspected, but high-dose steroid therapy did not elicit an improvement. Since the patient had been on steroid therapy, steroid-induced pancreatitis was considered, but historically the use of steroids had not been a problem for this patient, so this theory fell out of favor. Finally, close examination of the many tests to which the patient had been subjected revealed that he had cytomegalovirus. It was this virus, the doctors concluded, which caused the pancreas to become inflamed. Treatment with Ganciclovir (an antiviral) was begun. The patient improved and eventually recovered.

The 33-year-old Slovenian patient obviously benefited from excellent medical care. The team of doctors who treated him were skilled and creative. They did not think in a box but used the latest research to problem-solve for their patient. Anyone with lupus who becomes ill wants just such a medical team in charge of their care.

Pancreatitis is a serious condition--for anyone. If you have lupus, the situation is even more perilous. If you do have lupus, know in advance who the best lupus doctors are and where the best lupus treatment facilities are located. When illness strikes, whether it's pancreatitis or another ailment, be sure you are in a place which will offer the best chance for a successful outcome.

7 Replies

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  • Hi

    Just read your interesting article about pancreatitis - even more so because I was diagnosed with chronic pancreatitis about 4 years ago. Drastic weight loss and constant pain and diarhea and vomiting resulted in a collapse in the clinic while I was waiting to be seen by the doc.!

    I was found after an MRI scan that my pancreas had shrunk and the culprit they have decided on was the high dose of azathioprine I had been taking since the lupus diagnosis 10 years prior.

    So long as I take a very restricted diet I manage although the symptoms are never very far away

    .

    I have basically been left to my own devises as regards management even though I am lucky enough to have an excellent rheumatologist.

    Is it such a serious condition or am I nievely thinking that the diet control is helping this from getting any worse? If left untreated except for the diet what is it that can happen - is there anything that should be watched out for?

    Irene x

  • Dear Irenestephen, I will give you a quick answer and then do some research and follow up in a few days. You and I are kind of in the same boat--I had an acute attack of pancreatitis some 8 years ago. Nobody could (or can ) figure out why that happened. However, ever since I have observed some rigid dietary rules . Small meals, low fat, no irritants. The one thing I have done that perhaps you might consider is I've consulted a gastroenterologist. I want to be sure I have someone on board who is really well thought of in the medical community--also someone with whom my rheumatologist has a comfortable relationship.

    I'm sorry about your reaction to azathioprine. I'm glad you posted about this problem so others taking the medication can be alert to the possible side effects.

    Will do research and if I find anything more that may be helpful to you, I will pass that on.

    All the best,

    LW

  • I have lupus, and a few months ago my neice had an acute attack of pancreatic pain. The doctors do not know why. She has had some lupus like symptoms before this but not lupus diagnosed. She has to return to hospital next week. They said its nothing related to lupus, just an explanation that her pancreas is one or two inches higher than average? Any advice would be appreciated xxx

  • Hi,

    I really don't have any information for your niece that would be helpful. When doctors review my history with pancreatitis, they seem to scratch their heads. All that I can do about this is understand as much as possible about my condition and then place myself in the hands of doctors who are ethical, skilled and concerned.

    I always come back to the same principle: find the best doctors and know enough to participate in decisions about your medical care.

    I sure do hope your niece does not have lupus and that, as time passes, her pancreas becomes a non-issue in her life. As some people in this discussion have suggested, a troubled pancreas is best treated gently. Small meals, low fat, alcohol abstinence is often recommended. That pretty much describes my diet.

    All the best,

    LW

  • My husband has just been diagnosed with chronic pancreatitis and I was so shocked by that because he has no symptoms other than extreme tiredness (worse than mine). We haven't considered whether he could have an autoimmune disease until now but he is now considering doing further tests to check. The only thing the gastroenterologist told him to do is to have a very low fat diet, small meals and absolutely no alcohol, as the alcohol is the main culprit (alongside smoking, but hubby doesn't smoke). The online research I did on this is not encouraging in terms of prognosis, it seems very much like lupus, incurable and progressive but worse in that no medication can slow down the progression or manages it until the pancreatic function disappears, in which case enzyme therapy and insulin are given to help. But then everything we read on the Internet scares everyone witless, it is all so negative!!

    He is due to have endoscopic ultrasound to check how advanced his is. He is improving his diet and has cut down alcohol a lot but I'm still working on him cutting down alcohol entirely.

    I'm hoping he doesn't have lupus like me, otherwise we are a right pair.

    Thank you, lupuswriter, for sharing your knowledge with us.

  • Hi lupuswriter, Great article! Do you mind if I share this information? xxx :)

  • Hi Nightjar,

    Please do share it. And thanks for the comment!

    Regards, LW

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