SPECT scan and Rituxan update #lupus

After much waiting, worrying, and being jerked around by insurance, yesterday I finally got the SPECT scan done on my brain. I had it done at Cedars-Sinai, which is a very prestigious, incredibly messy and inconvenient hospital. If you’re facebook friends with me, you probably saw my post “If Godzilla ate some bricks and mortar and threw up a hospital, it would be Cedars”. The streets are narrow, the traffic is bad, and the parking structures are confusing as hell. We ended up parking in doctor parking by accident so the parking structure wouldn’t accept validation from the hospital.

I already had a headache when I left the house. It was worse when I got there, and about to get even worse. After they entered all my patient information into the computer and I officially existed, the technician came to get me in the waiting room. He took me back to a little room with a bed and gave me the contrast injection. I had to lay quiet in the dark for about 30 minutes before the scan was performed. He kept telling me that I wasn’t allowed to do anything stimulating, no reading, talking or “playing with my phone” (I’m not a ‘play with your phone’ person anyway) so I just lie there in the dark, bored and uncomfortable, and my headache starts to get worse.

After lying in the dark, it was time for the scan. Lying flat on my back always makes my headaches really bad, and they also had to strap my head in, which didn’t help either. I felt like I was wearing a hat that was too small. The scan took about 40 minutes, and the pain I was in was absolutely awful. My mom told me when I was at about the half-way mark. It was weird because the technician just strapped me in and pushed the *on* button and left the room for the entire scan. The last 10 minutes or so were pretty difficult to get through. My head hurt so bad. I just tried to lie there and close my eyes, and pretend I was somewhere else. It worked for most of the scan, but I had a couple moments where the pain made me want to panic.

When the technician finally wandered back in the room, he unstrapped me and told me to sit up slowly. He asked me if I was dizzy. I told him I wasn’t, that I had a really bad headache all day, and that’s why I was having the scan done. He had been a bit of a smart ass to me and my mom earlier, but I think when he realized I was in pain, he chilled out a bit.

On the headache pain scale of 1-10, my pain was probably a 9.5. It was just under the worst headache pain I’ve ever had. When it was time to leave, I needed to use the restroom first. The ladies’ bathroom was occupied for a really long time, so I went in the men’s room. I was just so pissed about the whole experience, I didn’t really care. They were single-person bathrooms anyway.

On the way home I took imitrex for my headache. I don’t like taking it because it usually causes me to have a worse headache the next day, but I was in a lot of pain and I just couldn’t deal with it anymore. So far today I don’t really have a headache, at least not like I did. I was aggravated the whole way home, and really exhausted. I probably could have taken medicine before the scan, but I was afraid my results wouldn’t be accurate. As terrible as it was, I’m hoping that the reason for the headache pain showed up on the scan.  

If you’re going in for a SPECT scan, don’t worry. Your experience will probably be better than mine. The only reason my experience was crappy is because I already had a headache when I got there. Overall, it’s a relatively easy procedure and I probably wouldn’t have minded it at all, had I not been in pain.

I’m going to my rheumatologist for my first Rituxan infusion on Tuesday. I will probably learn the results of the scan then. I’m getting the Rituxan treatments regardless of what the scan says, but it’s good to know the extent of the vasculitis in my brain.

My Rituxan infusions are going to be once a week for four weeks, and each infusion will take about four hours. According to my RN, the side effects won’t be much different from the Benlysta. I hope he’s right, because compared to other drugs, Benlysta side effects really weren’t that bad. I know the Rituxan infusions will be harder since they are four hours long, with an hour and a half drive each way tacked on. It’s only for four weeks, though. After that, I won’t have to have infusions for hopefully a long time, if the Rituxan works.



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