Posted 12/23/2010 3:41 PM (GMT 0)
I know that dapsone is a rare drug for a rare complication, Cutaneous Crohn's (CC from now on). Hence, I think I'm posting more so that this is posted somewhere, than necessarily expecting a conversation right now (although that would be great). When my doctor started talking about this drug, I couldn't find any personal experience with this drug for CC anywhere on the internet, so perhaps my experience will be useful to others in the same boat.
I talked to my doctor a few days ago -- basically, like a lot of things with this disease, they are not sure why dapsone helps CC, but it seems to help a lot of people. It has immunomodulatory properties. They also don't know much about what causes CC, just as they don't know what causes Crohn's.
He is at a major teaching hospital in Boston, and has given dapsone to about a dozen people with CC. Many, but not all, have responded.
He considers the drug much safer than the TNF blockers I've been on for a while. His biggest concern is that I won't respond.
The fact that dapsone is most often used for leprosy doesn't mean that CC has anything to do with leprosy .... they're just both skin conditions.
Yesterday the pharmacy called me to say they had none of the drug in stock. They called a few other local pharmacies, and none had it. They just don't prescribe it very often (guess there's not much leprosy in my neighborhood, a good thing). They are getting it in for me today.
Also, just to be complete, you have to get a G6PD blood test before taking this drug -- if you have that deficiency, the drug could kill you. Presumably, any doctor prescribing this rare drug would know that.....