Infusion therapy & a good news day.
This week has been exhausting… and it is only Wednesday. I’m not complaining though, because today was a good news day. I wasn’t sure what to expect as we headed down I-15 to Salt Lake City on our way to visit one of my ENTs to see about my sinuses and ears in relation to my GPA.
Let’s begin at the start of the week… cause Monday’s are always fun, right?
I am in what we call the “induction phase” of treatment. They base this on a combination of systemic corticosteroid and immunosuppressant therapy. I’ve been being treated for GPA since December when I started taking high-doses of prednisone… not my idea of a good time, but I have adjusted and life goes on. On Monday morning I started my Rituxan infusions and that morning I also woke up to a lovely allergic reaction to my sulfa antibiotic… my body covered completely in a rash, that thankfully didn’t itch, but now we must find an alternative. While Monday morning started out on the annoying side, it didn’t get worse, but I wouldn’t say it got much better. With in the first hour of my infusion I was not reacting so well, it was very uncomfortable, and I was, thankfully, given Benadryl via IV and slept the remaining 5 hours. It was an exhausting experience, but I’ve been told by many fellow GPA warriors that it will get a little easier each week.
Today I felt good. It wasn’t too tired, and woke up ready to head out, but also worried about what we would learn at today’s appointment. I was preparing for bad news, while crossing my fingers for good news. I got a little mix of both, but it was mostly a good news day. We learned that there was minimal scarring from the GPA and that my sinuses are looking much better, some crusting, but my nose is responding to treatments, and the saline rinses and humidifiers are helping. For now, I just need to monitor my symptoms and changes… well we will deal with that when the time comes.
My ears are a different story. I have Patulous Eustachian tube (PET) a physical disorder where the Eustachian tube, which is normally closed, instead stays intermittently open. Granulomatosis with Polyangiits can be a cause of this disorder, and in my case it is likely that it is. In medical science it is unknown why it causes this.
For now, we are leaving it alone. I am used to hearing myself breathe. It is a little annoying, but the noise I am accustomed to and the ear pain isn’t horrible. Personally I would rather not trade this problem for another one that could make things worse for me, and my doctor agreed and was relieved that I felt that I would rather just leave it alone for the time being. If it gets worse, or things change we can decide what to do then. They did have me do a hearing test, so that as things change we will be able to gauge where I started from.
Surgery for any of this is always a last resort when you have GPA, only in exceptional cases and complications, whose emergency nature do not permit waiting for a response to medical treatment. Not that I am at all interested in having another surgery soon. If I can avoid if it, I will.
Despite the somewhat depressing news about having to listen to myself breathe… I am relieved. It was a good news day, and I am hoping for similar outcomes for my upcoming appointments next week.