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.

@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.

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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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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.

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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?

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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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@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.

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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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@sadie_jane

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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Welcome to Connect, Sadie Jane and thank you for adding your story to the EN journeys shared by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @mmontgomery008 and @stacidaye.

Keep us posted on the results of the blood work testing for sarcoidosis. How do you deal with family, friends and even health professionals that tell you nothing is wrong or don’t understand the pain and other symptoms you live with? Do you try to educate them? Ignore the comments? Do you have friends or family members that get it?

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@beff2468
So appreciated reading your post. I was recently diagnosed with EN. My doctor didn’t seem to think it was that big a deal, but it was so painful to walk… lump o. Leg very tender and swelling/stiffness in ankles made moving feet difficult. Also just felt ill. I am a Breast cancer survivor … four years now. And this frightened me… I thought maybe rogue cells had traveled to my leg and ankles. Just learning about EN now and appreciate any info. Ty.

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Hello @esfourplus, and welcome to Connect.

I hope you’ve had a chance to read through the previous messages by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @sebley12, @sgerard, @kimmy63 and others in this group.

Can you tell us a bit more about yourself? What treatments have you tried?

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I’ve had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no one could explain what was going on. I went to the best Dr’s in New York, many of whom saw my welts but still thought most of it was psychosomatic. It’s crazy that it took going to a physical therapist to figure it out, he casually mentioned that going off gluten would to decrease my inflammation. I’ve been off gluten ever since and now I’m a fully functioning human. My legs still hurt when I walk, and I still sleep more than most, but I can live my life. I highly recommend removing it from your diet to see if it helps as I wish someone had told me sooner!

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Thank you @jillianm. I think I’m going to try this as I have been having multiple problems that I’ve been told are autoimmune in nature. Gluten may be the culprit. Is there a medical test that can determine this? Gailb

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@jillianm

I’ve had Chronic Erythema Nodosum for 5 years. I spent a year in bed and no one could explain what was going on. I went to the best Dr’s in New York, many of whom saw my welts but still thought most of it was psychosomatic. It’s crazy that it took going to a physical therapist to figure it out, he casually mentioned that going off gluten would to decrease my inflammation. I’ve been off gluten ever since and now I’m a fully functioning human. My legs still hurt when I walk, and I still sleep more than most, but I can live my life. I highly recommend removing it from your diet to see if it helps as I wish someone had told me sooner!

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Hello @jillianm,

Welcome to Connect; thank you for adding your story to the EN journeys shared by @kgjd97 @kety @freemary @blossom2016 @beff2468 @lshell @mmontgomery008 @stacidaye @esfourplus @lisafl and other members in this group.
I wonder if they have experienced similar benefits?

@jillianm, may I ask, how did you manage your symptoms before learning about gluten? I’m really glad to know that you found some form of relief.

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