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Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)
Autoimmune Diseases | Last Active: Feb 5 3:57pm | Replies (97)Comment receiving replies
I was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They didn't even know what it was back then. I spent most of my childhood in bed. I was miserable most of my life, until 9 yrs ago. I moved and went to a new Rheumatologist. He prescribed Methotrexate. The drug doesn't cure this disease, but it puts you in remission indefinitely. I have been in total remission for 9 yrs! It has been a miracle. No side effects, no knots, no pain, no fever, no aches, no fatigue. It's amazing!! Anyone with this disease needs to get to a Rhemotologists and ask for Methotrexate. It saved my life!
Replies to "I was diagnosed with Erythema No Dosum at 7 yrs old. I am now 54. They..."
I was treated in the past with Cortisone injections and Prednisone pills. Both put weight on me and I had so much Cortisone that it weakened my bones. I have spent my entire adult life with one fracture after another. I just had my 20th surgery in Aug. If I fall or bump into something, I will fracture a bone. If I lean over to clean the bathtub, I will fracture ribs. I take Prolia to help with my bone density. However, I still fracture bones every now and then.
I did not change my diet because I am a diabetic and I was already eating healthy. But, they tried changing my diet when I was 7 or 8 and it made no difference.
Little was known about this disease when I was 7. I spent my childhood at Emory Hospital in Atlanta with doctors from all over the world coming to see me, so I know a lot about this illness. For this reason, I would be happy to answer any questions.
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Welcome to Connect, @89630208, and thank you so much for adding your story to the EN journeys shared by members in this group.
@kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @mmontgomery008 @stacidaye @sadie_jane @esfourplus @jillianm, do you have any thoughts or insights to add?
@89630208, may I ask what treatments you've tried that had adverse side effects, or that were not effective? Have you made significant changes to diet as well?