15 Questions with Dr. David A. Isenberg - Gastrointestinal Issues with Lupus
Professor Isenberg graduated in Medicine (MBBS) from St Bartholomew’s Hospital in 1973. Following a series of training positions in General Medicine, Rheumatology, Neurology, Psychiatry and Gastroenterology, he became a Research Fellow at University College Hospital and the Middlesex Hospital in 1979 where he undertook a period of basic research culminating into the award of an MD Thesis (in 1984), based on studies of the aethiopathogenesis of myositis. During this period, he first became interested in Systemic Lupus Erythematosus and helped to run the Lupus clinic at UCH with Dr Michael Snaith, then head of Rheumatology. Following a year of clinical rheumatology at the Whittington Hospital in North London, he spent a further year in research at Tufts University, Boston, the new Medical Centre, where he was involved with the development and analysis of human monoclonal antibodies to DNA and subsequently phospholipids. On returning to the UK, he completed his training in rheumatology and was appointed Consultant Rheumatologist in November 1984. During the next six years, he developed his own clinical research laboratory and was given a personal chair in rheumatology (University College London) in 1991. Appointed Academic Director of Rheumatology, he became the Arthritis Research Campaign’s Diamond Jubilee Professor of Rheumatology at UCL in London in 1996. He has been elected to Fellowships of both the Royal College of Physicians and the Academy of Medical Sciences. He is the 2010 recipient of the Evelyn Hess Prize from the Lupus Foundation of America for his contribution to lupus research and treatment.
His specialist involvement is in the autoimmune rheumatic diseases, notably Systemic Lupus Erythematosus. Sjögren’s Syndrome, Myositis and the Anti-phospholipid antibody syndrome. At the Lupus clinic at UCH, in the past 25 years, has looked after well over 500 patients with this disease and this represents one of the largest cohorts of patients with this condition in the UK. Professor Isenberg’s principal clinical interests have been in the development of disease activity and damage assessment tools in patients with lupus and the British Isles Assessment Group (which he chairs) has been responsible for developing a clinical disease activity index which is widely used around the world. Professor Isenberg had also been the Chair (1998-2003) of the Systemic Lupus International Collaborating Clinics group (SLICC) and remains a very active member of this group. At the basic research level, Professor Isenberg’s interests are in the structure function origin of pathogenicity of autoantibodies, notably those binding DNA and phospholipids.
As a young child, I was administered many test to which a diagnosis of a spastic colon was given. This was back in the 70's. Years later, now in my 40's, I am still plagued with bouts of constipation and diarrhea. The pain at times can be debilitating, landing me in the ER. I was diagnosed with Lupus 9 years ago. Could my gastrointestinal problems be a result of Lupus? How exactly does Lupus interfere with the gastrointestinal system? Haleyville, AL
I was sorry to hear about the long standing problems with your bowel which has clearly caused you problems for many years. However, the alternating pattern of constipation and diarrhea is much more likely to be due to the irritable bowel syndrome, a relatively common disorder which is not linked to lupus. Given the fact that, as I understand it, your lupus developed many years after the bouts of constipation and diarrhea you referred to, I think it is again very unlikely that your gastrointestinal problems are a result of your lupus. Lupus affects the gastrointestinal system relatively uncommonly (compared to say the skin or joints) and there are several mechanisms by which it does so including inflammation of the blood vessels in the bowel wall and an occasional involvement of the pancreas and liver.
What are some of the symptoms of gastrointestinal problems associated with lupus? Alameda, CA
In common with Crohn’s disease the effects of lupus on the gastrointestinal tract range from the mouth to the anus. Thus mouth ulcers, difficulty with swallowing (dysphasia), anorexia, nausea, vomiting, haemorrhage and abdominal pain may all on occasion be due to lupus.
What is more likely to cause gastrointestinal problems, lupus or the medications a person takes for the symptoms of lupus, and how does one know which symptoms (diarrhea, gas, cramping) are caused by meds, e.g. Plaquenil, and which are caused by Lupus? South Chatham, MA
The most certain way to determine whether a symptom in the gastrointestinal tract (or indeed other parts of the body) is due to a drug is to stop the drug, see if the symptoms disappear then restart the drug and see if they return. However, many patients (and physicians) are not quite willing to go this far and on the whole the onset of a new symptom shortly after the prescription of a new drug raises the strong possibility that the symptom may be caused by the drug.
I have SLE. It seems that my gastrointestinal problems are caused by my diet. They all clear up when I stick to a wheat (gluten) free diet. I do not have Celiac disease as I have been tested. Have you done any research in this area? Is it recommended that individuals with lupus follow a gluten free diet? Dublin, Ireland
Celiac disease is one of many autoimmune conditions that can occur concomitantly with lupus. However, it is rare and in my group of around 600 patients only about 1% of patients have both conditions. I have not personally done any research in this particular area but based on my own experience I would not recommend a gluten free diet unless the tests for celiac disease were confirmatory.
Can gastroparesis be a symptom of Lupus? Is there a specific treatment or diet that can help decreases the effects of gastroparesis or weight loss associated with gastroparesis? Houston, TX
Gastroparesis is defined “a slight degree of gastro paralysis” which in turn refers to the paralysis of the muscular coat of the stomach”. It is not however a problem which I have observed in the cohort in lupus patients I have looked after for the past 30 years and if present would clearly require the attention of an expert gastroenterologist.
I have Lupus and was told I also have IBS. Could the IBS be a part of the lupus and not just another thing going wrong with me? I feel like it is all joined in together... It seems when I am getting ready to flare it also acts up badly. Any information on this would be very helpful. Oscoda, MI
Irritable bowel syndrome (IBS) is a common problem which is not usually regarded as a feature of lupus and treatment should certainly be advised by a gastroenterologist.
Is it common for lupus to affect the pancreas? What are the symptoms and possible treatment?
In a study of 36 patients with active SLE and an acute abdomen published some years ago, four patients were found to have some form of pancreatitis and in the same study of 18 events occurring in 15 patients with lupus who had an acute abdomen in the presence of inactive lupus three had pancreatitis. Thus overall, although involvement of the pancreas is rare, probably less than 1% in my experience, in the presence of acute abdomen, it is important to consider it in the differential diagnosis. The usual symptoms are severe upper abdominal pain going through to the back, nausea, vomiting and a high level of amylase on a blood test.
I was diagnosed with lupus 18 years ago. A year ago I was diagnosed with gastrointestinal vasculitis. I haven't been able to find much information on this condition. My question is, how serious is vasculitis in the stomach? Are there any foods that should be avoided during flare-ups? When a flare is coming on, is there anything that can be done to prevent it from getting bad enough to bleed? Arcanum, OH
The reason you have not been able to find much information on this condition is because it is rare. One study of 540 patients reported just one case of gastrointestinal vasculitis though the figure in my own group of patients is around 1%. I have not ever seen vasculitis affecting the stomach only, as in my experience it tends to involve the small and or large bowel. If a patient known to have this condition, they would invariably require treatment with corticoid steroid and quite possibly with immunosuppressive drugs or rituximab. It may be necessary to rest the bowel during periods of acute inflammation, but again advice must be sought from an experienced gastroenterologist.
I have been diagnosed with severe GERD, gastroparesis and colonic inertia after 4 yrs. of testing. I have pulmonary issues from the GI issues. Doctors are trying to determine if lupus playing a role in this. Are these GI issues possibly from lupus? I just had partial fundoplication, vagotomy and pylyorplasty to reduce symptoms of GERD going into lungs. Shavertown, PA
I think it is unlikely the symptoms you described are in effect part of your lupus. Colonic inertia is more commonly found in patients with scleroderma (though even here major gastro paresis of the lower bowel is relatively uncommon).
What are the correlations between Lupus and vomiting syndromes? When I have a Lupus flare it triggers uncontrollable vomiting. It does take me longer to digest food however my GI can find nothing wrong with my stomach or what causes the vomiting, any theories? Los Angeles, CA
Nausea and vomiting require careful assessment in patients with lupus. Prevalence figures have ranged in published series between 30% and 63% though in my own experience actual vomiting due to lupus is relatively uncommon, but nausea is frequently reported by patients during acute flares. It is important to exclude the possible side effects of drugs that any patient may be taking and it is particularly important to consider whether there is any oesophageal involvement contributing to the nausea/vomiting. A relationship between an oesophageal dysfunction and the common Raynaud’s phenomenon was recognized many years ago. However, the precise process by which an oesophageal abnormality is linked to lupus remains unclear. On occasions non-steroidal anti-inflammatory drugs have been shown to cause ulceration within the esophagus and this may be a contributing factor.
I've had Lupus with APS for 40 years. Seven years ago I developed autoimmune hepatitis. From the message boards and sites that I frequent, liver involvement with Lupus doesn't appear to be that common. How frequently does it occur? Because so many drugs are hepatotoxic, what would you recommend for treatment options? Honeoye, NY
I with several colleagues recently reviewed the frequency with which autoimmune liver disease occurs in lupus in children and in an adult population. In brief, among 377 adult patients and 92 juvenile patients, just 5 and 9 respectively had biopsy confirmed autoimmune liver disease. In all of the children, but notably none of the adults, liver disease pre-dated the diagnosis of lupus.
Abnormal liver function tests are relatively common in lupus patients (perhaps as many as 20% are recognized to have abnormal tests during the course of their disease) but as the question implies, in many cases this may be due to the toxic effects of drugs rather than direct disease involvement. The main treatment option is simply to stop the drug that may be causing the problem and see if the liver function tests correct themselves.
I have experienced two prolonged episodes of GI paralysis during active lupus phases. After extensive testing it was determined to be a nerve issue. My GI nerves were shutting down therefore everything else in that area was. Is this a common occurrence with lupus? Can you give me a brief explanation of this GI condition? What should I be concerned about for the future? Huntington, WV
As indicated in two of the questions above, gastrointestinal paralysis is a very rare problem during active lupus disease. I am not aware of any simple explanation as to why this should occur and management of this problem would certainly require discussion with a gastroenterologist.
In the absence of gallbladder stones, do you know if Lupus can attack the gallbladder? Brandon, FL
In the paper referred to above, of 36 patients presenting with active lupus in acute abdomen, two were found to have inflammation of the gallbladder in the absence of any gallbladder stones and two to have gallbladder inflammation with gallbladder stones of course Gall bladder problems are common in the general population – especially among women over 40. Overall, this is a very rare manifestation of lupus, however, it must clearly be considered with any lupus patients presenting with active SLE and acute abdominal pain.
Can ascites be caused by or associated with lupus and how is the best way to treat it? Las Vegas, NV
Ascites is usually the result of the level of albumin in the serum dropping to a very low level. In most cases, this would be due to kidney disease (the albumin protein simply passing out into the urine) but much more rarely it can be due to liver involvement. The best way to treat it ultimately is to identify the cause correctly and manage that appropriately, but in the short term it may be necessary if patients are very distressed to remove some of the ascitic fluid by inserting a needle into the abdominal cavity.
How can lupus affect a person’s esophagus and how is this generally treated? Is chronic pain in the esophagus an unusual symptom when someone has esophageal involvement? Perry Hall, MD
As indicated above, involvement of the esophagus in patients with lupus is widely recognized with difficulty in swallowing estimated to occur in between 1% and 13% and heart burn in 11% to 50%. Inflammation of the esophagus with ulceration has been reported in up to 5% of lupus patients, though in my own experience, this indicates that this is rather rarer and certainly a perforation of the esophagus in patients with lupus is extremely rare. It is generally managed by the use of proton pump inhibitors and thus the symptom of chronic pain in the esophagus due to lupus is very unusual.