Connect
← Return to Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)
Discussion
Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)
Autoimmune Diseases | Last Active: Feb 5 3:57pm | Replies (97)Comment receiving replies
Can anyone help please? I am so desperate. I was diagnosed with EN almost 3 years ago due to a "birth control" related issue. Took a steroid pack along with ibuprofen and it seemed to resolve it...for a day. They came right back in full force. I came off my birth control 1 year later and they still haven't gone away. I don't know what to do and I'm scared. I can't wear shorts and a bathing suit or even sleep right if I have a terrible flare and I don't want to be on prednisone forever. I have had blood work done and nothing abnormal. I'm going back to the dermatologist at the end of this month but all I want is answers. Can anyone please help.
Replies to "Can anyone help please? I am so desperate. I was diagnosed with EN almost 3 years..."
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.
Thank you so much for responding, I appreciate it. I definitely don't want to try any pharmacuticals because I'm not sure what that does to our bodies. I'm going to monitor my diet a little more as well. I cut out almost all meat but maybe I need to watch how much pasta and refined sugars I eat as well. I'm a runner too which makes this disease even worse. Thank you again.
Connect
Welcome to Connect, @mmontgomery008.
I hope you've had a chance to read through the previous messages by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell. Some of the treatments that have worked for them may help you prepare for your appointment with the dermatologist.
Can you tell us a bit more about yourself? What is a flare-up like for you? What treatments have you tried? Did you continue to take ibuprofen? Getting to know a bit more about your situation can help other members help you prepare for your appointment at the end of month.