1. < Skin Health

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.

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lilcuti | @lilcuti | Sep 15, 2020
In reply to @gingerw "@lilcuti Welcome to Mayo Connect. We are not doctors, but fellow patients, family members, and caregivers..." + (show)
@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 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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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 15, 2020
In reply to @lilcuti "Thank you for the articles, I have read them and I think at this point the..." + (show)
@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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1 reply
lilcuti | @lilcuti | Sep 15, 2020
In reply to @bustrbrwn22 "I am so sorry for the pain you are going through. Feel free to vent anytime" + (show)
@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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lilcuti | @lilcuti | Sep 17, 2020
In reply to @lilcuti "Hello, I am new to this so please bare with me. I found this while trying..." + (show)
@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.

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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!

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 17, 2020
In reply to @lilcuti "Hello, I am new to this so please bare with me. I found this while trying..." + (show)
@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.

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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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lilcuti | @lilcuti | Sep 17, 2020
In reply to @lilcuti "Hello, I am new to this so please bare with me. I found this while trying..." + (show)
@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.

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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.

REPLY
1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 17, 2020
In reply to @lilcuti "Hello, I am new to this so please bare with me. I found this while trying..." + (show)
@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.

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

REPLY
bustrbrwn22 | @bustrbrwn22 | Sep 17, 2020
In reply to @lilcuti "Thank you I need all the support I can get. I feel so alone with this." + (show)
@lilcuti

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

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@lilcuti please reach out whenever you need to. You are NOT alone.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 18, 2020
In reply to @lilcuti "I finally got someone to answer the phone at the rheumatologist and they said they will..." + (show)
@lilcuti

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, were you able to get a referral to the rheumatologist? Did you get the prescription filled?

REPLY
lilcuti | @lilcuti | Sep 18, 2020
In reply to @lilcuti "Hello, I am new to this so please bare with me. I found this while trying..." + (show)
@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.

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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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