On Monday, I heard from the Lupus expert doctor. My blood work was not indicative of vascular inflammation in my brain, but at that point it didn’t necessarily mean there wasn’t any at all. There just wasn’t enough to show up in the blood. He wanted me to go ahead and schedule a spinal tap through my rheumatologist. Obviously I wasn’t stoked on the idea. If you’ve read my blog for a while, you may have seen a post where I described an experience I had with a botched spinal tap. I won’t get into it, but my back still hurts from it, and that was in 2009.
I got a call today from my rheumatologist. She compared notes with the Lupus expert doctor and they both agreed that there was enough evidence that I have CNS Lupus (Central nervous system-brain and spine) and that we are going forward with Rituxan infusions. That means I don’t have to have the spinal tap done.
Edit: I understand now that my rheumatologist believes my blood test was indicative of vascular inflammation in the brain.
My rheumatologist managed to get the SPECT scan approved. For some reason, out of thin air, there wasn’t a problem anymore with the insurance. She said that since it’s a hospital procedure that I don’t even need approval from the insurance. After all that fighting with the insurance, just like that. Strange.
I’m not entirely sure what Rituxan treatments for Lupus entails. I know the infusion itself is longer compared to the Benlysta infusion which was about an hour and a half. I know it “crosses the blood/brain barrier” and can be helpful in brain inflammation, and I also know it carries a risk of brain infection. All immunosuppressants carry a risk of infection to some degree. I guess I’ll find out more details when I see my rheumatologist. I really don’t think she would put me on a medicine if she thought the risks outweighed the benefits.
I’ve been on a calcium-channel blocker (nifedipine) for the Raynaud’s. My toes get so blue and cold that I’ve been unable to wear sandals because the lack of warmth hurts too much. I also haven’t been able to go to bed without socks because they get so cold it keeps me awake. The Lupus doctor thought it might help with my headaches too.
My experience with it has been interesting. I take 10mg in the morning and again at night. If I forget to take a dose, the next dose I take will give me a pretty good headache. But it seems like if I remember to take it as prescribed, it seems like it helps my headaches to a point. There are still some times when it gives me a headache anyway, though. It gives me heart palpitations for the first 20 minutes or so, but they do go away. It seems like my toes are a bit warmer. I could stand wearing sandals the other day. Granted it was 90 degrees out, but still.
All in all, I know Rituxan is a somewhat risky “big guns” medication, but the Benlysta wasn’t helping me. I was going to LA every month for treatments and still feeling like an achy tired old fart that gets migraines every day. I’m ready to move on and try something new, and crossing my fingers that we’re on the right path now.