Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

Posted by kgjd97 @kgjd97, Sep 22, 2016

Does anyone else suffer from Chronic Erythema Nodosum? It’s been 10 years since I was first diagnosed with this and each year it seems as if it gets worse. I’ve seen Dermatologist, Rheumatologist, Immunologist and now a Neurologist. No one has ever been able to figure out why my flare ups come and there is no way to know when it will happen. I’ve had blood tests after blood tests done as well as biopsies but they only show my platelets extremely high and inflammation, which I already knew about. The worst flare ups came in 2014 and did some kind of damage to my nerves or at least that’s what dr’s think. For the past 2 1/2 years I have lived with chronic pain in my legs. I’ve had tests done on my arteries & veins as well as the nerves & MRI’s but NOTHING ever shows up. It’s frustrating because I know I’m in pain but nobody can figure out where it came from or why its happening. When I do have a flare up its easy for people to see why I’m hurting but they still can’t know the intensity of the pain the knots cause. When I’m not having a flare up I still deal with the pain in my legs and then I get how I look fine so how can I be hurting. Even some dr’s I’ve seen can question my pain. It’s so frustrating. I’m tired of taking meds when they’re obviously not helping. I’m just wondering if anyone else may have some of the same symptoms I do or have any suggestions.

@freemary

I just found out 2 weeks ago I have this condition. My kidney and GI specialists both said it was arthritis related. After looking it up on the internet everything I have points to erythema nodosum. Mine have turned in to bruise like places. Still sore to touch. Have been on prednisone for years because of polymialgia and RA. Hopefully this is just one episode only. I’m 72 years old and in good health otherwise.

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i STOPPED Nucoxia, though I still have four days of Wysolone to go. Once a day. The nodules have started again and painful. Only painkillers seem to work. God knows if there is any treatment for this. I am planning on seeing a Homoeopath Doctor.

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So sorry for anyone else having to go through EN. One of the difficulties is you are in pain and sickness and you dont look sick. The fever is low grade. Tell others you have an auto-immune disease since most people these days know what that is. Don’t waste your breath and energy explaining it because seriously most people dont get it. If you tell them its a type of skin disease, some people think they can catch it. Take care of yourself! Make sure you rest with legs elevated. The beginning of the disease is the worst with weakening, diarrhea, low grade fever, nausea, before the onset of the lesions. No, you don’t have a fever over 99.5 but believe your body is sending all of its energy to attack itself and make you better, auto-immune disease. The major way you get over this disease is by resting. Let your family know you need their help. Having it for the first month is purely exhausting and I am athletic.

**You have to keep taking the ibuprofen even when you think it is gone and you’re feeling great because it will come back worse with a vengeance if you don’t. This happened to me several times when I stopped ibuprofen too early. You can back off the doseage to 400-600 mg 3 times a day but dont take it completely away until you are sure its gone.
I had chronic erythema nodosum which was not recognized yet by most doctors as “chronic” for a long time from 1986 in college to 2002. Mayo was first ones I knew of to do this. I still have written it down on my chart and had doctors tell me there is no such thing, ha! While I could reproduce the articles for them I just nod my head and know that most people are ignorant on this subject. Why? Truly I was told by doctors not much research has been done. People don’t die from it if they have been extensively poked, prodded, chest xrayed, blood tested, eye checked, etc., and found nothing else wrong. With my first diagnosis in 1986, my father was a ENT at Barnes St Louis so he took me to his doctor friends, my shoes wouldnt go on because swelling came on so suddenly and I had no meds, anti-inflammatories. A bunch of specialists came into the room, med students, camera man, to take pictures for books. Then they put me on high doses of ibuprofen, 800 mg three times a day. It took about 12 weeks before I started feeling like I could walk without pain. I continued to have this once a year to year and a half for 10 years. I still had 2 lesions on my legs for awhile after recovering that remained there for a few years. I told my dad who again was a doctor, I really thought those two lesions were not just residual bruising and/or permanent joint damage but erythema nodosum still active. He believed me and asked me if I wanted to have a biopsy there. It was in a bad location for a biopsy (still have a scar) but I was game. After the biopsy the lab showed positive results for EN! I felt justified because everyone acts like you should be fine, it’s gone. But, I can tell you from this and having this sooo many times, that one or two can remain for awhile. Mine went away about 2 years after that initial. I still have tenderness and discoloration, darkness in that area and in 2 others that is permanent damage. (I have very white skin.) I can run without pain. The biggest way I notice it is if I am sitting on the floor. I can’t cross my legs normally.
As far as medicine, best thing is taking non-steroidal anti-inflammatories NSAID consistently 800 mg ibuprofen or naproxen if you can handle that. Dr put me on Naprosyn i.e. Naproxen before it came onto the over the counter market. 800 mg 3 times day. It hurt my stomach badly so I asked to go back to ibuprofen.
As to why you have it, I was tested over and over again first 5 times by specialists for Sarcoidosis, strep throat, lupus, rheumatoid arthritis, etc. Doctors told me after that, unless it was bad, I didnt need to come back. I did get EN again 6 years later ( month after getting chigger bites all over my legs) for the last time in 2001, it was the worst case I had. Lesions all over shins, both upper legs and thighs, and two on forearms. So painful! I couldnt work for 2 weeks. New doctor, dermatoligist, thought maybe I had something like lupus while I told her EN with unknown cause. Ran tests and had a biopsy and findings again were EN. Had me again take ibuprofen nothing else.
I have never posted to a medical site. Hope this helped. Take care! Sending prayers your way!

REPLY
@beff2468

So sorry for anyone else having to go through EN. One of the difficulties is you are in pain and sickness and you dont look sick. The fever is low grade. Tell others you have an auto-immune disease since most people these days know what that is. Don’t waste your breath and energy explaining it because seriously most people dont get it. If you tell them its a type of skin disease, some people think they can catch it. Take care of yourself! Make sure you rest with legs elevated. The beginning of the disease is the worst with weakening, diarrhea, low grade fever, nausea, before the onset of the lesions. No, you don’t have a fever over 99.5 but believe your body is sending all of its energy to attack itself and make you better, auto-immune disease. The major way you get over this disease is by resting. Let your family know you need their help. Having it for the first month is purely exhausting and I am athletic.

**You have to keep taking the ibuprofen even when you think it is gone and you’re feeling great because it will come back worse with a vengeance if you don’t. This happened to me several times when I stopped ibuprofen too early. You can back off the doseage to 400-600 mg 3 times a day but dont take it completely away until you are sure its gone.
I had chronic erythema nodosum which was not recognized yet by most doctors as “chronic” for a long time from 1986 in college to 2002. Mayo was first ones I knew of to do this. I still have written it down on my chart and had doctors tell me there is no such thing, ha! While I could reproduce the articles for them I just nod my head and know that most people are ignorant on this subject. Why? Truly I was told by doctors not much research has been done. People don’t die from it if they have been extensively poked, prodded, chest xrayed, blood tested, eye checked, etc., and found nothing else wrong. With my first diagnosis in 1986, my father was a ENT at Barnes St Louis so he took me to his doctor friends, my shoes wouldnt go on because swelling came on so suddenly and I had no meds, anti-inflammatories. A bunch of specialists came into the room, med students, camera man, to take pictures for books. Then they put me on high doses of ibuprofen, 800 mg three times a day. It took about 12 weeks before I started feeling like I could walk without pain. I continued to have this once a year to year and a half for 10 years. I still had 2 lesions on my legs for awhile after recovering that remained there for a few years. I told my dad who again was a doctor, I really thought those two lesions were not just residual bruising and/or permanent joint damage but erythema nodosum still active. He believed me and asked me if I wanted to have a biopsy there. It was in a bad location for a biopsy (still have a scar) but I was game. After the biopsy the lab showed positive results for EN! I felt justified because everyone acts like you should be fine, it’s gone. But, I can tell you from this and having this sooo many times, that one or two can remain for awhile. Mine went away about 2 years after that initial. I still have tenderness and discoloration, darkness in that area and in 2 others that is permanent damage. (I have very white skin.) I can run without pain. The biggest way I notice it is if I am sitting on the floor. I can’t cross my legs normally.
As far as medicine, best thing is taking non-steroidal anti-inflammatories NSAID consistently 800 mg ibuprofen or naproxen if you can handle that. Dr put me on Naprosyn i.e. Naproxen before it came onto the over the counter market. 800 mg 3 times day. It hurt my stomach badly so I asked to go back to ibuprofen.
As to why you have it, I was tested over and over again first 5 times by specialists for Sarcoidosis, strep throat, lupus, rheumatoid arthritis, etc. Doctors told me after that, unless it was bad, I didnt need to come back. I did get EN again 6 years later ( month after getting chigger bites all over my legs) for the last time in 2001, it was the worst case I had. Lesions all over shins, both upper legs and thighs, and two on forearms. So painful! I couldnt work for 2 weeks. New doctor, dermatoligist, thought maybe I had something like lupus while I told her EN with unknown cause. Ran tests and had a biopsy and findings again were EN. Had me again take ibuprofen nothing else.
I have never posted to a medical site. Hope this helped. Take care! Sending prayers your way!

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Mine seems to be going away. I’ve been on prednisone for years. I also have CKD and pancreatitis and RA, so it’s hard to tell what is causing what. I don’t have a fever, but I do have the other symptoms. Knowing what to eat and what not to eat is a problem since CKD and pancreatitis diets conflict with one another. I hope this EN does not come back, but my polymialgia comes and goes since 2009. I can’t aford to lose any more weight. This has all been so frustrating.

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@kariulrich

Hi everyone! I was diagnosed with hypermobile EDS by Dr. Nazli McDonnell years ago, is anyone here familiar with her research she did while at the NIA/NIH? My son also has characteristics but has not been formally diagnosed. I also have a vascular disease called FMD. This is a abstract of some of her work. http://grantome.com/grant/NIH/ZIA-AG000895-04

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I never met or saw Dr.McDonnell, but was directly involved with getting her involved in an emergency situation with a friend with vEDS. I wish she was still at the NIA/NIH, she did such important work!

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Sorry you have so much. I ate comfort food, a chocolate milkshake for lunch every day, while getting over it one EN episode because I felt so sick all the time while on naproxen. Eat what makes you feel good to keep your strength and weight up. Blueberry pie, whatever your comfort food is you can have. Take care!

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@beff2468

Sorry you have so much. I ate comfort food, a chocolate milkshake for lunch every day, while getting over it one EN episode because I felt so sick all the time while on naproxen. Eat what makes you feel good to keep your strength and weight up. Blueberry pie, whatever your comfort food is you can have. Take care!

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Thank you and a Happy New Year to you!

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@beff2468

Sorry you have so much. I ate comfort food, a chocolate milkshake for lunch every day, while getting over it one EN episode because I felt so sick all the time while on naproxen. Eat what makes you feel good to keep your strength and weight up. Blueberry pie, whatever your comfort food is you can have. Take care!

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Happy New Year back to you and God bless you!

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@beff2468

So sorry for anyone else having to go through EN. One of the difficulties is you are in pain and sickness and you dont look sick. The fever is low grade. Tell others you have an auto-immune disease since most people these days know what that is. Don’t waste your breath and energy explaining it because seriously most people dont get it. If you tell them its a type of skin disease, some people think they can catch it. Take care of yourself! Make sure you rest with legs elevated. The beginning of the disease is the worst with weakening, diarrhea, low grade fever, nausea, before the onset of the lesions. No, you don’t have a fever over 99.5 but believe your body is sending all of its energy to attack itself and make you better, auto-immune disease. The major way you get over this disease is by resting. Let your family know you need their help. Having it for the first month is purely exhausting and I am athletic.

**You have to keep taking the ibuprofen even when you think it is gone and you’re feeling great because it will come back worse with a vengeance if you don’t. This happened to me several times when I stopped ibuprofen too early. You can back off the doseage to 400-600 mg 3 times a day but dont take it completely away until you are sure its gone.
I had chronic erythema nodosum which was not recognized yet by most doctors as “chronic” for a long time from 1986 in college to 2002. Mayo was first ones I knew of to do this. I still have written it down on my chart and had doctors tell me there is no such thing, ha! While I could reproduce the articles for them I just nod my head and know that most people are ignorant on this subject. Why? Truly I was told by doctors not much research has been done. People don’t die from it if they have been extensively poked, prodded, chest xrayed, blood tested, eye checked, etc., and found nothing else wrong. With my first diagnosis in 1986, my father was a ENT at Barnes St Louis so he took me to his doctor friends, my shoes wouldnt go on because swelling came on so suddenly and I had no meds, anti-inflammatories. A bunch of specialists came into the room, med students, camera man, to take pictures for books. Then they put me on high doses of ibuprofen, 800 mg three times a day. It took about 12 weeks before I started feeling like I could walk without pain. I continued to have this once a year to year and a half for 10 years. I still had 2 lesions on my legs for awhile after recovering that remained there for a few years. I told my dad who again was a doctor, I really thought those two lesions were not just residual bruising and/or permanent joint damage but erythema nodosum still active. He believed me and asked me if I wanted to have a biopsy there. It was in a bad location for a biopsy (still have a scar) but I was game. After the biopsy the lab showed positive results for EN! I felt justified because everyone acts like you should be fine, it’s gone. But, I can tell you from this and having this sooo many times, that one or two can remain for awhile. Mine went away about 2 years after that initial. I still have tenderness and discoloration, darkness in that area and in 2 others that is permanent damage. (I have very white skin.) I can run without pain. The biggest way I notice it is if I am sitting on the floor. I can’t cross my legs normally.
As far as medicine, best thing is taking non-steroidal anti-inflammatories NSAID consistently 800 mg ibuprofen or naproxen if you can handle that. Dr put me on Naprosyn i.e. Naproxen before it came onto the over the counter market. 800 mg 3 times day. It hurt my stomach badly so I asked to go back to ibuprofen.
As to why you have it, I was tested over and over again first 5 times by specialists for Sarcoidosis, strep throat, lupus, rheumatoid arthritis, etc. Doctors told me after that, unless it was bad, I didnt need to come back. I did get EN again 6 years later ( month after getting chigger bites all over my legs) for the last time in 2001, it was the worst case I had. Lesions all over shins, both upper legs and thighs, and two on forearms. So painful! I couldnt work for 2 weeks. New doctor, dermatoligist, thought maybe I had something like lupus while I told her EN with unknown cause. Ran tests and had a biopsy and findings again were EN. Had me again take ibuprofen nothing else.
I have never posted to a medical site. Hope this helped. Take care! Sending prayers your way!

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@kgjd97
Ibuprofen works.

REPLY

I am 69 years old and have experienced Erythema Nodosum since February, 2007. After a severe and long respitory infection and several rounds of antibiotics, I noticed a round, hot and inflamed area located on the inside of my lower left leg. I had no pain, therefore, didn’t see a doctor for four months. I thought the inflammation would heal with time, not realizing the fact that I had an autoimmune disease. My dermatologist did a biopsy and determined that it was EN. After a year of trying different medications my EN condition subsided after taking Potassium Oxide for four months. The resulting scar was a dark, sunken area about 4 inches in diameter that never changes or improves. I have had three more cases of EN on the same lower leg, the last one being in 2015 and continues to this day. I went to a new dermatologist last spring (March 30th) who prescribed Celebrex for the inflammation and Plaquenil to dissolve the nodules. Thankfully, the Celebrex has helped an aching neck pain, but has done nothing for the EN. Likewise, the Plaquenil has done nothing to dissolve the nodules under the skin. I feel very fortunate that I haven’t experienced the extreme pain that I see many have endured with their EN condition. I discontinued the Plaquenil last month because I ended up in the emergency room with diverticulitis a week before Christmas and found that taking Flagl, Cipro and Plaquenil together equals disaster to the digestive system. In the meantime, I have recently read in the long instruction leaflet that comes with my Vivelle Dot hormone replacement therapy patches (using since 2007), that this HRT drug can cause Erythema Nodosum! Therefore, I have discontinued using HRT and, viola, entered into the new world of hot flashes! I have an appointment with my dermatologist next week and will let you know his conclusions.

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Hello @lshell,

Welcome to Connect; thank you so much for sharing all the information.
Along with its needed effects, a medicine may cause some unwanted effects. I found some information from Mayo Clinic about Vivelle-Dot hormone replacement therapy, which might be of interest to you: http://mayocl.in/1t9oqYC

How are you coping with the diverticulitis? Besides updating us about your appointment with the dermatologist, please let us know if you have any questions at all.

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Can anyone help please? I am so desperate. I was diagnosed with EN almost 3 years ago due to a “birth control” related issue. Took a steroid pack along with ibuprofen and it seemed to resolve it…for a day. They came right back in full force. I came off my birth control 1 year later and they still haven’t gone away. I don’t know what to do and I’m scared. I can’t wear shorts and a bathing suit or even sleep right if I have a terrible flare and I don’t want to be on prednisone forever. I have had blood work done and nothing abnormal. I’m going back to the dermatologist at the end of this month but all I want is answers. Can anyone please help.

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@mmontgomery008

Can anyone help please? I am so desperate. I was diagnosed with EN almost 3 years ago due to a “birth control” related issue. Took a steroid pack along with ibuprofen and it seemed to resolve it…for a day. They came right back in full force. I came off my birth control 1 year later and they still haven’t gone away. I don’t know what to do and I’m scared. I can’t wear shorts and a bathing suit or even sleep right if I have a terrible flare and I don’t want to be on prednisone forever. I have had blood work done and nothing abnormal. I’m going back to the dermatologist at the end of this month but all I want is answers. Can anyone please help.

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Welcome to Connect, @mmontgomery008.
I hope you’ve had a chance to read through the previous messages by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell. Some of the treatments that have worked for them may help you prepare for your appointment with the dermatologist.

Can you tell us a bit more about yourself? What is a flare-up like for you? What treatments have you tried? Did you continue to take ibuprofen? Getting to know a bit more about your situation can help other members help you prepare for your appointment at the end of month.

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