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.

Deciding on a Medication.

As I was packing for vacation I received a call from the doctor's office that my appointment scheduled for the 16th wasn't going to be soon enough. With NMO you can go to bed one night with eye pain and wake up functionally blind and the same goes for paralysis so it's imperative to start treatment as soon as possible. I went ahead and rescheduled my appointment for yesterday.

After discussing the disease a little bit we moved on to what to do next. Today I'll be having some blood tests and chest x-rays done to be sure I don't have any ongoing viral infections and then hopefully in the next two weeks I will have my first infusion of Rituximab. Rituximab is often used in combination with chemotherapy to treat certain types of cancer. My doctor thinks this is the best option for me as it is fast acting and offers long term protection. I'll have to have two infusions every six months. My doctor thinks the infusions are the best option as the pills take too long before they become effective and I am at high risk for relapse. Now we just have to see if my insurance will cover it as the treatment is insanely expensive. I know it's petty and I will gladly take whatever medication will keep me healthy but of the three medications commonly prescribed for NMO, Rituximab is the only one that does not have hair loss as a side effect. This isn't something I discussed with the doctor but was something I discovered upon doing research when I got home. Considering that my hair is the only thing that reminds me of healthy me when I look in the mirror, I count keeping it as a win.

It's been a busy week and it's only going to get busier. Aside from the lab tests I have to see if I can hunt down a flu shot as it's not recommended to get vaccinated once on Rituximab as it's an immune suppressing drug. It's okay that I'm busy though, it finally feels like I'm making progress.