I want to start this post with a little disclaimer. The following information is 100% my own understanding of the history of treatment etc. for GPA. I am not a medical expert. I've done a little research on the subject in order to post this (links to sources at the end).
Until fairly recently (almost within my lifetime) a diagnosis of Wegener's Granulomatosis was basically a death sentence. It was only in the 1970s & 1980s that doctors figured out that hitting it with a combination of a chemotherapy agent and corticosteroids could send it in to remission.
That's the treatment I got when I was first diagnosed. I was on huge amounts of Prednisone, and I had several infusions of Cytoxan, which is a pretty terrible chemo drug. As far as chemo therapy goes, I didn't have it too bad. I did lose some of my hair (but I started with a lot so it wasn't that noticeable), but I didn't really get most of the terrible chemo side effects you usually expect. I also did not get bladder cancer from my treatment, which was a real concern, so that was good.
I did go through a few weeks with, almost literally, no immune system. That's kind of how the chemo agents work - you kill off the entire immune system (which is causing the problem) and hope it grows back healthy.
After I finished that poison, I took Methotrexate for about another year before I was pronounced to be completey in remission. Methotrexate in this case was used as a kind of maintenance drug - it inhibits the growth of certain kinds of cells.
The treatment I'm going to get this time around is completely different. Last week, when I saw my doctor, he told me that these days chemo is kind of a last ditch effort. So no cytoxan for me! Yay!
What am I doing instead? Well, there are two options:
Option A - Rituxan infusions.
Rituxan was approved to use in treating GPA in 2011 and so far seems to be pretty damn effective. Where cytoxan is a chemical, rituxan is a protein. It's an antibody molecule that latches on to B-cell and essentially just pops them. So rather than murder my entire immune system, it just get rid of a bunch of problematic cells and then I'm good to go. Long term? Who knows. It's only been used to treat this for a couple years. But so far so good, and I think it sounds promising.
This is a very aggressive treatment though. This little relapse of mine is very very limited. GPA has the potential to mess with a lot of very important body parts. It's only picking on my nose and my throat; it's not even in my lungs like it was last time. More than that, it's probably actually been active for a long time (possibly a couple years) and hasn't really gone anywhere. Is a huge, aggressive, systemic treatment overkill? Maybe.
Option B - Oral Meds
This would be some pill cocktail of mycophenolate, azathioprine, and methotrexate. It would be a bunch of pills for a while. It's kind of a gentler approach. Probably just as effective, but it might take longer. Honestly, this option doesn't appeal to me that much so I don't have much to say about it.
I talked to my doctor today, and we're going to option A. He would have been really comfortable going either way - in his terms, he's 52% for rituxan, 48% for pills. I'm more inclined to rituxan, so that's what it's going to be.
So, after some insurance mumbo jumbo* gets straightened out, and we are sure I don't have TB (test takes 48-72 hrs), I will finally get down to the business of fixing my immune system.
It's kind of neat, I guess, to think that I am kind of blazing the trail when it comes to treatment, management, and general understanding of this disease. I am a tiny part of new medical frontiers. On the other hand, it would maybe be nice if all the doctors were old hat at taking care of this condition.
Here are some websites with pretty good information if you feel like doing your own reading:
National Institute for Allergy and Infectious Disease
American College of Rheumatology
*Insurance mumbo jumbo: Rituxan infusions are super expensive and I can't start them until we're sure my insurance will pay. Each treatment costs approximately $20,000. I'm getting four of them. My insurance will cover most of that, but I'll still probably get stuck with a ginormous co-pay. To that end, the drug company is actually giving me a co-pay card that will cover some, if not all, of that cost. So basically, the drug company is able to keep their prices ridiculously high because they give money to the patients that need it and over charge insurance. It makes no sense to me at all. Out system is screwed up.