Erythema Nodosum

Posted by lilcuti @lilcuti, Sep 11 2:11pm

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

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@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.

Liked by lilcuti

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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.

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@gingerw

@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

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Thank you so much I will definitely check out the articles and will get back to you. I really appreciate you taking the time to help me they are very painful and right now they are out of control. I’ll get back soon and share what I find. Thanks again

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@bustrbrwn22

@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.

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Thank you I need all the support I can get. I feel so alone with this.

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@johnbishop

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.

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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

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@lilcuti

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

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@lilcuti, I'm not sure if it helps but I also had issues putting compression socks on and taking them off. I finally found some zippered compression socks that are much easier to put on and take off.

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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

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@gingerw

@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

Jump to this post

Thank you for the articles, I have read them and I think at this point the only thing left to do is bed rest because I’m not getting any better. I am on day 7 of Indomethacin which I have to take for 10 days and there has been no change actually getting worse. The doctor told me as last resort we could try steroid injections directly into the knots but I gave so many it would take hours and that would be torture unless they put me to sleep! I am at a lost so I’m thinking I should email him about giving bed rest a try.

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@lilcuti

Thank you for the articles, I have read them and I think at this point the only thing left to do is bed rest because I’m not getting any better. I am on day 7 of Indomethacin which I have to take for 10 days and there has been no change actually getting worse. The doctor told me as last resort we could try steroid injections directly into the knots but I gave so many it would take hours and that would be torture unless they put me to sleep! I am at a lost so I’m thinking I should email him about giving bed rest a try.

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I am so sorry for the pain you are going through. Feel free to vent anytime

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@bustrbrwn22

I am so sorry for the pain you are going through. Feel free to vent anytime

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Thank you. I am waiting on a call back from the doctor now. I’m at the point I may just go somewhere else.

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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!

Liked by bustrbrwn22

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How frustrating – begging to get a return call from someone who took the Hippocratic Oath. Please keep us posted.

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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.

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@lilcuti I’m awaiting a reply that answers your question as it makes no sense to me.

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