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.

@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!

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!

@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!

@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!

@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.

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.

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.

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.

@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.

@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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I had the same issues with the steroids and they would help for a bit but as I weaned off the knots came back with a vengeance. I finally got tired of that and decided to just take pain meds and wait the episode out. Then about 4 years ago I went to a specialist and she tried me on a drug called Dapsone. You need to start in low dosages (25mg) and be sure to have bloodwork done every few weeks. I got up to 100mg when I realized my body couldn’t handle that dosage. My bloodwork showed me anemic and a few other things so they took me back down to 75mg and that worked better. Another medicine that helped pain wise was Tramadol. It kinda took the sting out of the pain. They had me on 50mg and 4 a day. In January 2016 I had a flare up and at that point knew it was time to yet again try something else. I had seen where others who had EN had luck with going gluten free and others just by changing their diet in general. I decided to change my eating habits and try to lose some weight so I started the Atkins diet. I lost 50 lbs by July and I haven’t had a single flare up since. This is HUGE to me cause I’ve dealt with EN for 10 years and this is probably the longest I’ve gone without a flare up. Hope some of this will be helpful to you. Good luck and I’ll be praying for you. People can’t begin to understand how this disease affects our bodies.

@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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Thank you so much for responding, I appreciate it. I definitely don’t want to try any pharmacuticals because I’m not sure what that does to our bodies. I’m going to monitor my diet a little more as well. I cut out almost all meat but maybe I need to watch how much pasta and refined sugars I eat as well. I’m a runner too which makes this disease even worse. Thank you again.

Hi everyone! I have been diagnosed with EN, my first episode occurred in 2014 and was treated with oral steroids which worked ok, but basically it just resolved itself several weeks later. It then came back almost exactly a year later, at which time I was given oral steroids again, but had to stop taking them because I also began experiencing some pretty extreme gastrointestinal issues and went through a year and half long process of trying to figure out what the cause of all my stomach issues was. My EN took a backseat to all my stomach issues but was never truly resolved. The nodules are mostly at my thigh level and around both knees and extend down to my lower legs. They will flare up off and on, but don’t ever go away entirely. I can always feel the nodules even when they are at the least severe stage. Recently they have been more inflamed and very tender to the touch. They have also been larger than ever before and extremely painful. They are always very uncomfortable and tender, but this has been the most painful. I showed them to my PCP again and he felt it was time to have a biopsy done on them and sent me to a Dermatologist. The Dermatologist felt like a biopsy was unnecessary because he felt it would only confirm what he already knew, that it was in fact EN. He felt a painful biopsy didn’t need to be done and gave me a steroid injection (Kenalog?) and wrote me a prescription for Plaquenil. He said that the Plaquenil could be hard on my stomach, and with my issues with nausea etc, I may not be able to take it. The steroid shot worked very well at taking the extreme inflammation down and my knots got better for about a week. However, as suspected, the Plaquenil made me sick to my stomach and I had to stop taking it after 2 days. My knots are getting more inflamed as the steroid wears off. I go back to see my PCP this week and then back to the Dermatologist next week. I just hope that one of them has another option for treatment. This seems to be a chronic issue and isn’t getting better. The pain is very difficult to manage and I pray that something will be done to help manage it more consistently and effectively. I read through the other posts on this thread and plan to discuss some of the options others have used. Any helpful advice is greatly welcomed! Do I need a biopsy, if it’s pretty clear that I have EN by the appearance and symptoms?

Hi @stacidaye,

Thank you for joining, and welcome to the Connect community; we’re happy to have you here.
I’m confident that @lshell @beff2468 @freemary @kgjd97 @sebley12 @elizamail @sgerard, @kimmy63, @kety will return with more insight for you.

Here is some information about Erythema nodosum (EN), http://bit.ly/2nfk4yK, which states that diagnosis of this condition is based on symptoms, and may be supported sometimes by a biopsy.

@stacidaye, have you found out more about your gastrointestinal issues, since inflammatory bowel disease (IBD), such as Crohn’s can be a common cause?

@kanaazpereira

Hi @stacidaye,

Thank you for joining, and welcome to the Connect community; we’re happy to have you here.
I’m confident that @lshell @beff2468 @freemary @kgjd97 @sebley12 @elizamail @sgerard, @kimmy63, @kety will return with more insight for you.

Here is some information about Erythema nodosum (EN), http://bit.ly/2nfk4yK, which states that diagnosis of this condition is based on symptoms, and may be supported sometimes by a biopsy.

@stacidaye, have you found out more about your gastrointestinal issues, since inflammatory bowel disease (IBD), such as Crohn’s can be a common cause?

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Thank you so much for the info and for connecting me with others who have dealt with EN. I was diagnosed with Gastroparesis for my gastrointestinal issues and also had my gallbladder removed. I have had multiple tests and lab work done, including a gastric emptying scan, endoscopy on my stomach, and the pipida scan which came back showing my gallbladder was not functioning properly. My Gastroparesis is not severe and I have been able to control it with diet and medication for the most part. But, I do have issues with constipation and therefore have to be careful with watching my fluid intake as not to become dehydrated and avoiding certain medications that will worsen it. I also suffer with chronic pain issues due to Degenerative Disk Disease and have had 4 back surgeries. So, I am on a Fentanyl patch for pain, which is a very strong opioid medication, that also can contribute to constipation. I’ve kinda been through a lot with my health issues with one medication helping one condition but not good for one of the other conditions I have. It’s a constant battle of weighing the benefits against the side effects.

Hello Everyone,

Many of your stories sound familiar. I was diagnosed with lupus in 2001 at age 17 after a severe flare up of erythema nodosum, along with pericarditis and various other symptoms. At the time my rheumatologist didn’t call it EN, but over the past year EN has been added to my diagnosis, and we are currently waiting on sarcoidosis blood work to confirm that as well.

Last summer I had my EN biopsied by a young doctor, and it was a painful experience. They didn’t go deep enough to get enough fat cells, and the biopsy was inconclusive. I’m having another flare again now. Last week, I went to a more experienced dermatologist who was able to confirm the EN without a biopsy, by just looking at my “spots” as I call them. The nodules are painful before they are visible, and they gradually appear on my lower legs first. They start out as small bright pink/red dots, then grow in size & firmness. They get larger, dark and bruise-like, then eventually (with treatment) they fade out like a bruise. It often takes several weeks for the spots to completely fade even after the pain & swelling goes away. I always fear they will scar, but so far I have not experienced scarring.

When I have flares, I take prednisone. I have not been able to tolerate the Plaquenil. I also use naproxen for the pain, and otc Prilosec to combat the gastro issues. My dermatologist recommended coated baby aspirin for the pain this time, and I am giving it a try. After using aspirin for 2 days, I think the naproxen does a better job with the pain. Rest & elevation help me through the work day. Cold compresses and Epsom salt baths can be soothing in the evenings.

My heart goes out to all of you experiencing EN. Thank you for sharing your stories. It is comforting to know I am not alone. I am fortunate to have a team of doctors working to help me understand my situation, but I know it can be frustrating to have friends, family, and even doctors tell you that nothing is wrong when you are in pain and know something is not right.

Kindly,
SJ

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