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Thread: Anyone out there with CNS vasculitis?

  1. #1
    Join Date
    Aug 2005
    Pueblo, Colorado
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    Default Anyone out there with CNS vasculitis?

    I was just diagnosed with CNS vasculitis about a month ago. Have been seeing a rheumatologist since 2001 with joint pain, Raynauds etc.

    She said she only has 3 patients with this in her practice and the other docs in the practice have very few as well. She said only about 10% of lupus patients ever get this. I started having seizures in April and was able to get into a neurologist as she was on vacation. After many tests, she finally diagnosed lupus of the brain. I have an almost constant headache, have trouble concentrating and my brain is very inflamed. Taking Prednisone and undergoing monthly cytoxan treatments. She said after I finish the cytoxan, she will probably put me on Imuran.

    I'm training for a new job in AZ for the next 4 weeks. We've already been training for 3 weeks and flying back and forth from Colo to AZ. I'm constantly tired and taking Percocet for the headaches but try to take it only when absolutely necessary.

    Just wondered if anyone has gone through this??? At first, I was like I don't have time to deal with this but my dr said if I don't get it treated I could go into a coma or could die from this. So was forced to slow down a bit (I'm very obsessed with work and have always been a workaholic). It's been tough especially trying to learn something new and dealing with headaches. My new job is working for a pharmacy benefit mgmt company. What a coincidence! When were learning alot of the drugs, I knew what they were and how to pronounce them!

    I would appreciate any feedback about this form of lupus since it's not very common!

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hi Catlady;
    Vasculitis of the Central Nervous System is an inflammation of the brain's blood vessels due to lupus activity. It is the most serious of the CNS syndromes associated with lupus, it was the first to be described & is one of only two CNS syndromes (the other being psychosis) that fulfill the ACR (American College of Rheumatology) criteria for defining lupus.
    Vasculitis of the CNS usually occurs early in the disease course; over 80% of episodes take place within 5 years of diagnosis. The typical patient experiences high fevers, seizures, meningitis-like stiffness of the neck, & may manifest psychotic or bizarre behaviour. 10% of lupus patients develop CNS vasculitis.
    Untreated, their course rapidly deteriorates into stupor & ultimately coma.
    It is diagnosed either by a conventional angiogram, a magnetic resonance angiogram, lumbar puncture, or tests to detect high levels of antineuronal antibodies in the serum.
    It is treated with high doses of corticosteroids, or cytotoxic drugs, & can be treated successfully.
    The Body's Nervous System is divided into three parts:
    1. The central nervous system (CNS) consists of the brain and spinal cord.
    2. The peripheral nervous system is comprised of nerve fibers that supply the skin and muscles with the power needed for sensation and movement.
    3. The autonomic nervous system helps to regulate spinal nerves and peripheral nerves, and innervates, or supplies nerves to, the internal organs. Its role in SLE is poorly defined.
    The nervous system requires an uninterrupted flow of blood to supply its tissues with oxygen and nutrients necessary for normal functioning. A number of possibilities have been suggested to explain how lupus may cause the many symptoms of nervous system involvement:
    A. Nerve tissue may be damaged when antibodies attack nerve cells or blood vessels.
    B. Nutrients and oxygen are delivered through blood vessels that feed the brain, spinal cord and nerves. If blood flow is slowed or interrupted, the cells of the nervous system are injured, unable to function normally, and symptoms develop.
    The symptoms that occur vary depending on the location and extent of the tissue injury.
    CNS vasculitis is characterized by:
    * high fevers
    * seizures
    * psychosis
    * meningitis-like stiffness of the neck.
    Seizures occur when injured or scarred brain tissue becomes the focus of abnormal electrical discharges. These seizures may be a one-time occurrence or a persistent problem. Anti-convulsant medications are used to prevent seizures by controlling the brain's abnormal electrical discharges.
    CNS vasculitis usually requires hospitalization and high doses of corticosteroids. Doctor's generally make sure that any type of infection is ruled out before treatment is initiated.
    Here is a web-site by John Hopkins regarding CNS Vasculitis. It is pretty informative:

    Peace and Blessings

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