08-07-2005, 07:19 PM
I have been pre-lupus since about 2001, or so my rheumatologist says. In April of this year, I started having seizures. Many tests/MRI done and finally just found out that I do indeed have lupus. She recommended cytoxan therapy (I've been on methotrexate for several years). I just got a new job and have to train in Arizona for 6 weeks. Wanted to hold off on treatment but she said it's extremely serious and I absolutely could not wait. Had first chemo session last week. Not too bad except I've had severe headaches for the last couple months.
I'm looking for a penpal. I'm from Colorado, have 2 cats, a husband, and an 18 year old son. Am a supervisor at a call center and have been in this business for the last 10 years. I hate reading lupus books because it really scares me.
Don't know how common lupus of the brain is, just know it's not good.
08-09-2005, 02:28 AM
increasingly, researchers are recognizing that tissue damage in Lupus is not limited to joints and kidneys but often includes the brain as well.
Sometimes, brain damage occurs when antibodies, made by the overactive immune system, trigger blood clots, which can form in or travel to the brain, causing strokes. Sometimes, the destruction comes from misguided antibodies that cause inflammation of blood vessels in the brain, triggering seizures and memory loss. Sometimes antibodies or other immune substances called cytokines may directly attack brain tissue. And sometimes lupus simply causes spasms in blood vessels, resulting in decreased blood flow to parts of the brain, and often, migraine headaches, too.
However the damage occurs, two-thirds of people with lupus are now believed to suffer some kind of brain or behavioral problem.
Brain scans such as PET and SPECT help doctors to detect problems such as decreased blood flow to certain areas of the brain, which raises the risk of seizures and memory impairment. Once seizures occur, a growing array of drugs, including Dilantin, Phenobarbital, Tegretol, Depakote and Valproic acid, can help prevent further attacks.
Today, doctors have better antibiotics to manage steroid-induced infections, and they have better immunosuppressants, including Imuran and Cytoxan, and they are more skilled at how to use them to block inflammation. Doctors are more sensitized to look for neuropsychiatric problems in lupus patients, they are getting better at using even simple paper and pencil tests to determine whether cognitive difficulties stem from damage to part of the brain or emotional reactions to the disease. Cognitive problems that stem from depression can be treated with antidepressants; those that stem from an inflammation in the brain can be treated with steroids. Experimental drugs may soon play a growing role, too, including DHEA (dihydroepiandrosterone), a natural hormone not yet approved as a drug by the Food and Drug Administration, that seems to offset lupus symptoms in some patients.
The prognosis for brain lupus is not as bad as it used to be. There are a lot of things now that can be done and treatments that can really help.
Try to keep yourself informed, I know it can be scary, but knowledge is your best defense against fear!!
Best of Luck
Peace and Blessings
08-18-2005, 10:11 AM
Where in Colorado are you? I am in Arvada!