Yesterday my Wegener's specialist gave me a mix of good and bad news. The good news is that for the first time in 4 years, the disease is responding well to treatment. The fancy shmancy $10,000-a-dose drug that makes me feel like absolute death for six weeks is doing the trick. Go figure.
Apparently the Wegs dog that lives on this block likes to eat the expensive stuff. Neither cytoxan ($150 per month) nor CellCept ($900 per month) were able to lull the bad-tempered dog to sleep. But Rituxan, with a price tag of $40,000 for a month of treatment, has convinced the dog that a nice long nap is a great idea. (Before you start clicking away at your calculator, Rituxan is only given every 6 to 12 months.)
My doctor surprised me by saying that I don't need to go back on CellCept between Rituxan treatments, and that I don't need to do more Rituxan for a year. He also felt confident that I'd be able to work as a chiropractor again "at some point." Well Howdy Doody, that's good news.
The lousy news was that we lowered the prednisone too much a few weeks ago and it nearly shut down my adrenals. In order to fix it I have to raise the dose all the way back up for a whopping 6 months before trying to taper again. I was within a couple weeks of being off of it.
(For those who have never enjoyed prednisone, here's an analogy of what this news was like: Imagine that you are required to walk 100 miles without stopping. Hour after hour, day after day, you trudge on, stumbling with weakness and pain. Then you finally get within a few feet of the end and someone says, "Nope. Start all over. " And you don't get new shoes.)
All things considered, it's more good news than bad. I can't shout BINGO yet, but it's a pretty decent start.
