Erythema Nodosum

Hello, I am new to this so please bare with me. I found this while trying to google doctors in my area that specialize in EN. I happened to find this group and it was comforting to know that I am not suffering with this alone. I have been struggling with this for at least 10 years and steroids were helping with the outbreaks but seems they have recently stopped working. I have a flareup right now and its the worse one I've every had. My legs and ankles are all swollen and my shoes aren't fitting and I am so tired of "experimenting" with all these different drugs and dosages that just aren't working. I am currently taking Indomethacin 50mg to help with the inflammation and Nexium so that it doesn't upset my stomach but as usual it doesn't seem to be working. Does anyone know of a doctor that specializes in this condition that won't look at me crazy when I tell them how painful and uncomfortable it is? Has anyone found a medication or an underlying cause? Thanks for any and all help and I pray relief for those going through this.

Hello, I am new to this so please bare with me. I found this while trying to google doctors in my area that specialize in EN. I happened to find this group and it was comforting to know that I am not suffering with this alone. I have been struggling with this for at least 10 years and steroids were helping with the outbreaks but seems they have recently stopped working. I have a flareup right now and its the worse one I've every had. My legs and ankles are all swollen and my shoes aren't fitting and I am so tired of "experimenting" with all these different drugs and dosages that just aren't working. I am currently taking Indomethacin 50mg to help with the inflammation and Nexium so that it doesn't upset my stomach but as usual it doesn't seem to be working. Does anyone know of a doctor that specializes in this condition that won't look at me crazy when I tell them how painful and uncomfortable it is? Has anyone found a medication or an underlying cause? Thanks for any and all help and I pray relief for those going through this.

Hello, I am new to this so please bare with me. I found this while trying to google doctors in my area that specialize in EN. I happened to find this group and it was comforting to know that I am not suffering with this alone. I have been struggling with this for at least 10 years and steroids were helping with the outbreaks but seems they have recently stopped working. I have a flareup right now and its the worse one I've every had. My legs and ankles are all swollen and my shoes aren't fitting and I am so tired of "experimenting" with all these different drugs and dosages that just aren't working. I am currently taking Indomethacin 50mg to help with the inflammation and Nexium so that it doesn't upset my stomach but as usual it doesn't seem to be working. Does anyone know of a doctor that specializes in this condition that won't look at me crazy when I tell them how painful and uncomfortable it is? Has anyone found a medication or an underlying cause? Thanks for any and all help and I pray relief for those going through this.

@lilcuti Welcome to Mayo Connect. We are not doctors, but fellow patients, family members, and caregivers who share our experiences and strength with others.

Your symptoms sound uncomfortable to say the least! While i also live with autoimmune disorders, this one I am not familiar with, so I looked it up. NCBI, the National Center for Biotechnology Information, published an article this past June that may give you some information: https://www.ncbi.nlm.nih.gov/books/NBK470369/
Also, there is an article from John Hopkins Medicine https://www.hopkinsmedicine.org/health/conditions-and-diseases/erythema-nodosum
While both point to a possible spectrum of causes, it can take time to figure out what the underlying reason is. Have you experienced any of the possible causes these articles refer to?
If you live near one of the Mayo Clinic campuses, or a large teaching hospital, you may have more success getting to the root of it all and finding relief.
I would like to hear more about what might have brought this condition on!
Ginger

@lilcuti I just read a little to learn about your condition and it sounds horrible and very rare so not probably given a lot of medical research. I’m sorry I have nothing to offer but support when you need it.

Hi @lilcuti, I would like to add my welcome to Connect along with @gingerw. You might also be interested in another discussion on Connect where other members share your symptoms and learn what has helped them.

Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS): https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/

You mentioned your legs and ankles being swollen. I also have lymphedema in my legs and wear compression socks which help with the swelling during the day. I found an article I thought you might find interesting and could possibly discuss with your doctor -- Compression stockings as an effective treatment for erythema nodosum: Case series: https://www.sciencedirect.com/science/article/pii/S2352647517300643

I think a doctor that specializes in diagnosing and treating Erythema Nodosum is a rheumatologist or dermatologist but I'm not sure. As @gingerw mentioned, Mayo Clinic or a large teaching hospital would be an excellent choice if it's a possibility.

Thank you I will read the articles that you suggest and I appreciate your help. I do have compression stockings that were recommended years ago but this outbreak is so painful I can’t bare to get them on right now

Hello, I am new to this so please bare with me. I found this while trying to google doctors in my area that specialize in EN. I happened to find this group and it was comforting to know that I am not suffering with this alone. I have been struggling with this for at least 10 years and steroids were helping with the outbreaks but seems they have recently stopped working. I have a flareup right now and its the worse one I've every had. My legs and ankles are all swollen and my shoes aren't fitting and I am so tired of "experimenting" with all these different drugs and dosages that just aren't working. I am currently taking Indomethacin 50mg to help with the inflammation and Nexium so that it doesn't upset my stomach but as usual it doesn't seem to be working. Does anyone know of a doctor that specializes in this condition that won't look at me crazy when I tell them how painful and uncomfortable it is? Has anyone found a medication or an underlying cause? Thanks for any and all help and I pray relief for those going through this.