Erythema Nodosum

Posted by kety @kety, Nov 23, 2016

I am suffering from painful nodules on the calf and feet. They are red and sore. Till I take HCQS 200 and Naproxen for pain, I feel better. Once I stop it, it flares up again. Worse in Nov and Dec. Anybody can help with a cure.

Interested in more discussions like this? Go to the Skin Health group.

Hello @kety, and welcome to Connect.
Those nodules sound painful, but we’re so glad you joined Connect, because here you will find members who share your symptoms and may be able to help. Allow me to introduce you to @kgjd97, @sebley12, @elizamail, @sgerard, and @kimmy63; could you offer some more insight into Erythema nodosum?

Here is also some information from Mayo Clinic on a drug that is specifically used for Erythema nodosum: http://mayocl.in/2gKTgI0

@kety, have your doctors done any tests to rule out other conditions that may be causing these nodules?

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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.

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@lilcuti

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.

Jump to this post

@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

REPLY
@lilcuti

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.

Jump to this post

@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.

REPLY
@lilcuti

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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

Jump to this post

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

Jump to this post

@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.

REPLY
@lilcuti

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.

Jump to this post

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

REPLY
@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.

REPLY
@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.

Jump to this post

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

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