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Mar 28, 2017 · Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) in Autoimmune Diseases

Thank you so much for the info and for connecting me with others who have dealt with EN. I was diagnosed with Gastroparesis for my gastrointestinal issues and also had my gallbladder removed. I have had multiple tests and lab work done, including a gastric emptying scan, endoscopy on my stomach, and the pipida scan which came back showing my gallbladder was not functioning properly. My Gastroparesis is not severe and I have been able to control it with diet and medication for the most part. But, I do have issues with constipation and therefore have to be careful with watching my fluid intake as not to become dehydrated and avoiding certain medications that will worsen it. I also suffer with chronic pain issues due to Degenerative Disk Disease and have had 4 back surgeries. So, I am on a Fentanyl patch for pain, which is a very strong opioid medication, that also can contribute to constipation. I’ve kinda been through a lot with my health issues with one medication helping one condition but not good for one of the other conditions I have. It’s a constant battle of weighing the benefits against the side effects.

Mar 27, 2017 · Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) in Autoimmune Diseases

Hi everyone! I have been diagnosed with EN, my first episode occurred in 2014 and was treated with oral steroids which worked ok, but basically it just resolved itself several weeks later. It then came back almost exactly a year later, at which time I was given oral steroids again, but had to stop taking them because I also began experiencing some pretty extreme gastrointestinal issues and went through a year and half long process of trying to figure out what the cause of all my stomach issues was. My EN took a backseat to all my stomach issues but was never truly resolved. The nodules are mostly at my thigh level and around both knees and extend down to my lower legs. They will flare up off and on, but don’t ever go away entirely. I can always feel the nodules even when they are at the least severe stage. Recently they have been more inflamed and very tender to the touch. They have also been larger than ever before and extremely painful. They are always very uncomfortable and tender, but this has been the most painful. I showed them to my PCP again and he felt it was time to have a biopsy done on them and sent me to a Dermatologist. The Dermatologist felt like a biopsy was unnecessary because he felt it would only confirm what he already knew, that it was in fact EN. He felt a painful biopsy didn’t need to be done and gave me a steroid injection (Kenalog?) and wrote me a prescription for Plaquenil. He said that the Plaquenil could be hard on my stomach, and with my issues with nausea etc, I may not be able to take it. The steroid shot worked very well at taking the extreme inflammation down and my knots got better for about a week. However, as suspected, the Plaquenil made me sick to my stomach and I had to stop taking it after 2 days. My knots are getting more inflamed as the steroid wears off. I go back to see my PCP this week and then back to the Dermatologist next week. I just hope that one of them has another option for treatment. This seems to be a chronic issue and isn’t getting better. The pain is very difficult to manage and I pray that something will be done to help manage it more consistently and effectively. I read through the other posts on this thread and plan to discuss some of the options others have used. Any helpful advice is greatly welcomed! Do I need a biopsy, if it’s pretty clear that I have EN by the appearance and symptoms?