Pericardial Lupus

Just had an emergency procedure which resulted in 1.3 litres of fluid being removed from around my heart (Pericardium area). Yet to get the lab results as to what may have caused this acute problem, and what is in the said fluid. In my case there are three likely culprits: Spread of my lung cancer, or, result of Radiotherapy, or, direct link to my SLE. Has anyone any experience/knowledge of Pericardial Lupus?

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  • I haven't myself but does sound like what my ex mother-in-law may have had . She started being ill in her 40s when my youngest son was born . She had severe rash and fluid all over her body . At the time doctors didn't have a clue what was wrong with her they were baffled they even took pictures of her rash for a medical journal , it was 15 years before they said she had lupus . She has had fluid around her heart and lungs I think , she had an operation that is like a window in her heart she said to drain off fluid . She has had various issues over the years , she is 82 now .

  • Hi gogspr,

    Here is what The Lupus Encyclopedia by Donald E Thomas Jr, says about pericarditis in lupus;

    "[Pericarditis] is very common in SLE patients, with up to 60% having evidence of pericarditis at the time of autopsy. However, only about 25% actually develop symptoms of pericarditis, meaning that most people do not develop any significant problems from it.

    "As with pleuritis, inflammation from lupus pericarditis can cause the pericardium to produce more fluid that normal, causing excessive fluid to accumulate in the pericardial sac (the space between the heart muscle and the pericardium). This fluid is normally slippery and slick, but with the inflammation from lupus, the number of white blood cells increases in the fluid, and other inflammation-induced changes can cause this fluid to lose its lubricating effects. This combination of events causes the most common symptom of pericarditis, which is pleuritic chest pain (chest pain worsened by breathing). The chest pain of pericarditis can occur anywhere in the chest, but most people commonly describe it as underneath of just to the lest of the breast bone (the sternum). Sometimes this chest pain is worse when the person lies on their back, causing great difficulty with sleeping. If the fluid accumulates enough, a condition called cardiac tamponade can occur, causing difficulty with the heart pumping blood effectively, low blood pressure, a fast heart rate and shortness of breath. This can be a life-threatening situation. However, as mentioned, most people who have pleural inflammation from lupus notice no problems at all, and doctors diagnose it by accident or not at all.

    "The usual treatment for pericarditis is the use of non-steroidal anti-inflammatory drugs (NSAIDs) and moderate to high doses of steroids (depending on how severe it is). In most cases, the antimalarial hydroxychloroquine is sufficient in controlling the inflammation, but occasionally stronger immunosuppressants such as methotrexate, azathioprine, mycophenolate or belimumab may be needed. If there is a lot of fluid causing difficulty with the heart pumping blood properly (cardiac tamponade), the fluid has to be drained from the pericardial sac. This is usually performed in an operating room and a piece of pericardial tissue is removed, creating a pericardial window to access fluid to leak out of the sac so it does not accumulate. "

  • Thank you for the info. Paul. Now have lab results which show cancer cells in the fluid. Amongst the next steps being considered is immunotherapy which would involve boosting my immune systems and stopping my mycophenolate. Feel as if I am going to be a bit of a guinea pig but, as my special wife always says, "we don't do negatives in this house".

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