Getting Treatment!

Yesterday after much back and forth between my doctors and insurance company I was finally able to begin treatment for NMO. I am receiving infusions of a medication called Rituxan (Rituximab). Basically, that just means I sit there with an IV drip of the drug for 4-6 hours. They start the drip off slowly and increase the speed every 15 minutes as long as I'm tolerating it reasonably well. The goal is to get to the speed they normally use of around 375 mg/hr.

I got up to 100 mg/hr before it became difficult to swallow and my throat felt raw. My mom alerted the nurses to the fact that my throat was swelling closed and I was having difficulty breathing. They rushed in, turned off my drip, put me on oxygen and administered a steroid. As soon as the steroid hit I was able to breathe easily again. The infusion center nurses were really on top of it, it's nothing new for them. The on-call doctor was brought in and he and my nurses discussed what happened and decided to start up again but not go past 75 mg/hr since I react at 100.

My 4-6 hour infusion has now been going for 14 hours and I have approximately two and a half left to go. That's completely okay though because the hospital has excellent pizza and I got to spend some time with friends who came to visit. Oh, and I finally started in on the postcards I got on a recent vacation. So, hospital time can be super productive if you plan in advance. I even brought my crochet.

I am thrilled to finally receive this medication. It is going to suppress my immune system which will make it more difficult for my rogue antibodies to attack and damage my eyes, brain, and spinal cord. It won't fix the damage that's been done but should help to stave off new attacks which is so important for me since damage from attacks can be permanent. Once I'm done for the day I'm going to do a happy dance (I'm leaning toward a sick girl's version of Thriller), eat breakfast, and then sleep. Okay, so I'll probably binge watch something on Netflix but sleep will be in there somewhere.

I'm home now, I didn't have any adverse reactions when we kept it at 75 but it did end up taking over 16 hours. I go back in two weeks to have it done again, this time we'll know to ask to be scheduled for first thing in the morning. Im going to go curl up under a big crocheted blanket and under a fluffy black and white kitty who seems to think I'm some sort of pillow.