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!