We had our first appointment with Em's new rheumatologist today. She seems fantastic and based on my first impression, well, I'm impressed. She just recently finished her fellowship, so she's fresh, young, and up to date with treatments. Dr. S has seen children benefit from aggressive and conservative treatments, so she is flexible and understanding. She also has two young children of her own, so she interacts beautifully with my Emma. I am happy.
Em's anemia is under control, so we get to stop the iron supplement! Yay! One less thing to bother her tummy. Thankfully, Dr. S likes to avoid prednisone whenever possible, so she didn't even suggest that for Em's treatment. She recommended joint injections or Enbrel as our next step and and was absolutely okay with and supportive of my choice to go to Enbrel and avoid anesthesia and joint injections. So, onto Enbrel it is. Since Kaiser is a well-oiled machine, I'll likely pick it up tomorrow and we'll start this weekend. I'll keep you posted.
Now, Enbrel is scary to a lot of people because it is a new medication. It is a biologic, which means that instead of being chemically manufactured, it is produced in a lab using a biological process. Being a bit of a science nerd myself, I think that's pretty cool; especially since I've always preferred biology to chemistry.
Enbrel works by decreasing the immune system's inflammatory response. It does this by being sneaky. Inside your cells there are lots of receptors that bind to different things and set processes in motion. Think of an electrical socket on your wall. You have to plug in a cord to this receptor to get electricity to your lamp. Once it's plugged in, you flip the switch, and voila! Light! Now, imagine that there are a bunch of extra, fake sockets on your wall. They don't have any electricity connected to them, but you don't know which one is the real one, and which are the fakes. If you plug your lamp into the wrong one, nothing happens. Enbrel is a fake receptor. TNF, which is something that starts the process of inflammation, get tricked by these fake receptors and binds to them and gets stuck. That means there is less TNF floating around to bind to the real receptors and cause inflammation. Thus, a decreased inflammatory response, which means less active auto-immune arthritis.
The bad news: Having a decreased inflammatory response is pretty much the same thing as saying that you have a suppressed immune system, which means a higher risk of infection. Combine this with a toddler who touches everything and has no problem putting her hands into her mouth afterward, and you have a concerned parent. Unfortunately, I can't put my kid in a bubble. Just know that I will be extra paranoid about germs and will avoid you if you are sick. The part that is really scary is that there is an increased risks of cancers, heart failure, and other awful side effects associated with using TNF blockers. Awesome. Either a slow, painful deterioration of her joints that could land her in a wheelchair or a surgery room for a knee replacement in the future due to uncontrolled arthritis, or a higher risk of cancer all because I want my child to be pain-free and able to run, climb, and hold a pencil.
This is why juvenile arthritis sucks so badly. Parents have to make incredibly difficult decisions to help their babies, all the while knowing that each new treatment may have no affect on the disease at all.
At least Emma is happy and active. She's brave and amazingly tough. I could joke and say that she takes after me, but really, I'm hoping that I can learn from her.
Wish us luck.
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