I just looked up this disease to see what it is, and it sounds like an inflammatory condition where the body is attacking itself. I'm so sorry you are going through this! I know what it is like to suffer from something like this as I have had autoimmune disease and many inflammatory conditions, but I am free of them all right now, and it's all been through changing my diet, no medications.
I healed myself of autoimmune thyroid disease and dermatitis herpetiformus by going gluten-free many years back. I didn't know I had celiac disease because I didn't have the typical digestive discomfort that most celiacs do.
Then this year I found out that potatoes and tomatoes were causing lots of inflammation in my body. My main symptoms were these tender red patches of skin, and a grinding pain in my hip. I thought the hip pain was structural, but a doctor told me that it was much more likely to be bursitis or tendonitis. A light went on when I realized that it might be more inflammation. I already suspected tomatoes, and an elimination diet confirmed it. Then later I found that I reacted the same way to potatoes.
Probably not everyone is so sensitive to their food choices, and there are probably many other things that cause inflammatory diseases, but for me it's all been diet, so I would encourage you to explore this option too.
Dr. McDougall describes a plan for doing an elimination diet here:
http://www.drmcdougall.com/med_allergic.htmlIt takes a lot of dedication and discipline to do this, but it sounds like you are motivated enough. The key for me was going down to a very simple group of foods that allowed me to be symptom-free, and then carefully testing each new food by itself to see if I had any negative reaction to it. I think I've found the major culprits, though I still test foods as my life allows to find ones that I am possibly having a more subtle reaction to.
Burgess (a star McDougaller and member of this forum) has many posts here and a website of his experiences getting inflammation-free through changing his diet. My group of foods is different than his, but it was really helpful for me to read what he wrote to understand the process of an elimination diet and to get motivated to do it. You can do a search for his posts and he has a link to his blog in his signature.
Good luck!