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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.
Replies to "Hello, I am new to this so please bare with me. I found this while trying..."
@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 look into them. I finally got mine on it took some time & it was painful but I got it. Will definitely be leaving them on long as I can. I appreciate all your help
My legs are getting worse! I now have them on my thighs and I can’t get into any of my shoes. I try soaking in epsom salt every night but the last 2 nights I haven’t been able to sleep because my legs feel like they are on fire! My doctor called yesterday and wants me to try the prednisone again along with colchicine. I honestly feel like he doesn’t know what to do so he is just trying stuff while I’m suffering. I have been trying to get an appointment with a rheumatologist but can’t get anyone to call me back but I will keep trying. I don’t know what else to do I need help!
How frustrating - begging to get a return call from someone who took the Hippocratic Oath. Please keep us posted.
I finally got someone to answer the phone at the rheumatologist and they said they will not make and appointment unless I got a referral! I also got a call from the pharmacist saying that since my doctor has now prescribed Hydroxycloroquine to take along with the prednisone the pharmacist has to call my dr to ask WHY I need it because of COVID to see if I’m approved to get it! Since when does Pharmacist question doctors??? Have I missed something? I feel so defeated right now.
@lilcuti I’m awaiting a reply that answers your question as it makes no sense to me.
I was finally able to get my prescription filled about 2 hours ago! The doctor had to reduce the dosage he originally prescribed for them to fill it! He is referring me to another dermatologist 1st so I am waiting to get a call from them to see if another doctor can help. If the 2nd dermatologist doesn’t work he will then refer me to rheumatologist. So prayerfully the medicine will work I start taking them both in the morning. Thanks for checking on me I truly appreciate it.
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@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