I had the same issues with the steroids and they would help for a bit but as I weaned off the knots came back with a vengeance. I finally got tired of that and decided to just take pain meds and wait the episode out. Then about 4 years ago I went to a specialist and she tried me on a drug called Dapsone. You need to start in low dosages (25mg) and be sure to have bloodwork done every few weeks. I got up to 100mg when I realized my body couldn’t handle that dosage. My bloodwork showed me anemic and a few other things so they took me back down to 75mg and that worked better. Another medicine that helped pain wise was Tramadol. It kinda took the sting out of the pain. They had me on 50mg and 4 a day. In January 2016 I had a flare up and at that point knew it was time to yet again try something else. I had seen where others who had EN had luck with going gluten free and others just by changing their diet in general. I decided to change my eating habits and try to lose some weight so I started the Atkins diet. I lost 50 lbs by July and I haven’t had a single flare up since. This is HUGE to me cause I’ve dealt with EN for 10 years and this is probably the longest I’ve gone without a flare up. Hope some of this will be helpful to you. Good luck and I’ll be praying for you. People can’t begin to understand how this disease affects our bodies.