I went to see my rheumatologist yesterday to discuss the results of my spinal tap and a few other tests. There was no indication of inflammation in my spinal fluid. I also tested negative for Multiple Sclerosis, which was something I was worried about. I tested negative for neuro antibodies. I had tested positive for the neuro antibodies before the Rituxan. This means there is currently no antibody activity in my Central Nervous System. While I am still getting daily migraines, it is no longer caused by antibody-induced vasculitis in my brain. I am no longer in danger of having a stroke or TIA. The cause of my headaches is no longer an emergency
I’m going to see my neurologist on Tuesday to figure out what the current cause of my headaches could be. My rheumatologist believes it could still be vascular-related but he explained it being like Raynaud’s of the brain. He thinks that if my blood vessels constrict and dilate much like the vasospasms that occur in Raynaud’s, then it causes my brain to sometimes be over- and under-oxygenated. Headaches would be the result of over-oxygenation and ‘brain fog’ would be caused by under-oxygenation. He called it ‘vasculopathy’ and said it was nothing to worry about in the way of emergencies. He also said it could be difficult to treat. After I meet with my neurologist and he can give me a new assessment based on my new lab results, my rheumatologist said he would come up with a new ‘game plan’ to treat the rest of my lupus.
My Sed rates were normal. There was no indication of muscle inflammation in my blood. My ANA is still high, which still points to definite lupus activity. My ANA will always be positive, there isn’t anything that can be done about that. I will always be positive for other lupus antibodies as well, the only thing that changes is their level of activity. I still have definite systemic involvement. My ferritin levels were actually normal, which is unusual for me. I’ve been anemic for years. I have changed my diet a little. I stopped eating red meat completely (not that I really ate it anyway). I’ve basically been eating rice, potatoes, vegetables, chicken or fish, cereal and almond milk, fruit and some organic snacks in between meals. Everything is low salt, no preservatives, and organic if I can help it. I don’t eat restaurant food or anything instant or microwaveable. I’m unsure what caused my ferritin levels to become normal, but I’m certainly happy about it. My vitamin D3 is low, which is not surprising, since I cant be in the sun at all. He told me to take 4,000 IU a day.
There are still things to address in the future, like the constant heart palpitations, high blood pressure, the daily headaches, and the overall chronic pain and fatigue that slow me down. The rheumatologist had to take our first couple of appointments to take care of the most important and alarming aspect of my symptoms, which was the vasculitis. I have a neuro appointment on Tuesday, an endocrinology appointment at the end of the month, and I’ll see the rheumatologist again sometime after that to put everything together to figure out what my next course of treatment is. He talked about prednisone, which I’m not thrilled about, being that my adrenals are already underactive, and I already have chronic heart palpitations. The only person that could really answer that question is my endocrinologist. I’m sure I will still need to be on an immunosuppressant of some kind. It wouldn’t surprise me if they actually put me back on an IV drug like Benlysta, since my CNS lupus seems to be a little quieter for now.