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DiscussionChronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)
Autoimmune Diseases | Last Active: Feb 5 3:57pm | Replies (97)Comment receiving replies
Replies to "So sorry for anyone else having to go through EN. One of the difficulties is you..."
@kgjd97
Ibuprofen works.
I have had chronic EN for the last 17 years, I am a Family Medicine physician and have found myself having to explain it to most new dermatologist or rheumatologist I see as they often have no patients with it or have seen one or two with it who had it bc of birth control pills. I have had every test in the book- colonoscopy , chest X-ray, labs and biopsy and my sed rate, CRP are only abnormal labs. They shoot up every time I have a flare. When I have a bad one- I can’t make a fist and walk like I am 80 years old bc of joint pain and feel like I have the flu, in addition to the lovely red “exquisitely” tender knots. I wonder if any non patient really gets what exquisitely tender feels like. I tell them to run full speed into their coffee table and slam their shin into it, then the next day, palpate it deeply, that is what EN nodules feel like . I think I get respect from my docs bc I am super athletic and outdoorsy and a Doctor so they see the huge change between when I have flare and don’t - hiking and riding horses and martial arts and then I can barely walk for a few weeks. My current flare I have tried indomethacin, steroids and am no better so Tuesday I am back to the drawing board. Last time it got this bad we used orencia which worked. I have also tried plaquenil in the past (didn’t work). I saw another person here who had nerve issues- interesting bc I had autoimmune neuropathy in 2009, it was axonal pattern on my EMG (not demyelinating) with weakness in legs and trunk. Resolved with IVIG. I was so thankful my neurology team got it approved. I was better in a few weeks after treatment. One thing that was also medically relevant was that after the IVIG, I went two years with no EN. The longest I had ever been . I usually get it a couple times a year. I think the IVIG must have also removed the auto antibodies triggering my EN. If IVIG was not so expensive I’d love to try it again for EN. I wish I knew what the trigger was. I’d love to hear anyone else’s stories about things their doctors have tried. I have also done the clean eating , Whole 30 all the way. Just finishing up my Nutrition therapy degree bc I think it is such important part of this.
Mine seems to be going away. I've been on prednisone for years. I also have CKD and pancreatitis and RA, so it's hard to tell what is causing what. I don't have a fever, but I do have the other symptoms. Knowing what to eat and what not to eat is a problem since CKD and pancreatitis diets conflict with one another. I hope this EN does not come back, but my polymialgia comes and goes since 2009. I can't aford to lose any more weight. This has all been so frustrating.