Lupus and epilepsy

I would love to know if any other lupus sufferers are struggling with epilepsy too. I struggle on with the pains and almost constant fatigue of lupus and have always said no to the offer of medication as I am terrified that it will mess with my epilepsy. This has been fairly well controlled with medication and lifestyle for some years but when I do have a seizure I end up in hospital and take some time returning to 'normal '.

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  • Hi fifibee,

    Is you epilepsy a separate diagnosis from your lupus, or are the seizures a symptom of your lupus?

    "Sometimes lupus first starts with a seizure or a series of epileptic fits. This is usually when the patient is untreated and the disease fairly active. It is also an important feature of antiphospholipid syndrome (Hughes syndrome). It is sometimes associated with high fever. Fits or seizures are one of the non-specific ways that the brain reacts to severe illness. Once the lupus is treated further fits are the exception rather than the rule." - This is taken from our factsheet, 'LUPUS and the Brain' which you can read and download here - lupusuk.org.uk/wp-content/u...

    What has your doctor suggested with regards to treatment?

  • Thanks for your prompt reply Paul. To answer your question, my epilepsy was diagnosed about 20 years ago and my lupus ( along with Raynauds) some years later.

    I am now 56 and so very tired of living with the restrictions that lupus puts upon a sufferer. I don't recall the drug suggested by my neurologist but at the time he did say that there was the possibility of it increasing seizures.

  • Thank you for the additional information fifibee. I can understand your reluctance to try that treatment if it could exacerbate your epilepsy as a result. There are a number of different treatment options available for lupus though, so it may be worth discussing it more with your consultant to see if there is a different option that may be suitable?

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