I'm am currently trying to help out a close family friend who is dealing with his wife's SLE. She is currently in the hospital for the third time in less than a month with vasculitis. Although I am well acquainted with SLE from my own dad, he fortunately has never had to deal with vasculitis so this part of the disease is new to me.
I've read up on vasculitis and have a basic understanding but I wondered if any others have dealt with this with their own loved ones. My friend is really falling apart as he is the sole caretaker of his wife. He works full time, is in school and is trying to either manage his wife at home or going to the hospital to visit her. Currently, she is experiencing severe psychiatric symptoms (paranoia, delusions, hallucinations) which cannot be managed at home. Her latest MRI shows that her brain swelling has not subsided any from the original MRI from about a month ago. We try and remain hopeful that each day will be better than the one before.
So, here's my question: Has anyone else dealt with vasculitis and if so could you please share your experience with me? Also, what supports would you suggest for my friend as continues to be the sole caretaker of his wife?
Thanks is advance,
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I'm sorry to hear of this condition. I had cerebral vasculitis when I was in hospital. I had seizures for two days, then went into coma for 3. When that happens, (as I was told) it means Lupus activity is in her brain and should be put on large doses of solumedrol to reduce the swelling in her brain. She may also need immunosuppressives to calm down the activity. Such as chemotherapy, or radiation. Again, sorry to hear of your situation.