Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS)

Hello, the swelling has not come back. Like I said earlier, I still get the occasional bump, but it doesn't itch, and there is no pane. When I do get a bump, the area only itches if I forget to put on the aloe vera, but I put it on right away and the itching goes away within a few hours. Before I tried the aloe vera, the itching use to be terrible. I would scratch so much that I would make my leg bleed. I prefer the gel compared to the raw plant that I tried. The gel is just so easy to use.

I forgot to mention that I bought the aloe vera gel at Target. It is very inexpensive, about $5.00 per bottle. It is approximately 16 oz. per bottle. The container is a clear pastic. It is something like 98% percent aloe vera, and I believe it has no alcohol. If anyone is interested, I can get more info. from the label, just ask.

@jigglejaws94, Ha ha! Your @name made me giggle, I love it. How did you come up with that name? My best friend has EDS. I am going to suggest that she sign onto this Connect group. How are you doing with yours? -Terri

@mgmpops44 Have you tried asking the pharmacist? Sometimes providers will make exceptions if your doctor specifies that you absolutely need that dose. Some of my meds needed pre-approval like that.

@jillianm Hi there. My best friend has EDS and Psoriasis. I suggested that she try a gluten free diet. She did and said she had a 90% improvement in her skin and aches and pains.

I have had chronic EN for the last 17 years, I am a Family Medicine physician and have found myself having to explain it to most new dermatologist or rheumatologist I see as they often have no patients with it or have seen one or two with it who had it bc of birth control pills. I have had every test in the book- colonoscopy , chest X-ray, labs and biopsy and my sed rate, CRP are only abnormal labs. They shoot up every time I have a flare. When I have a bad one- I can’t make a fist and walk like I am 80 years old bc of joint pain and feel like I have the flu, in addition to the lovely red “exquisitely” tender knots. I wonder if any non patient really gets what exquisitely tender feels like. I tell them to run full speed into their coffee table and slam their shin into it, then the next day, palpate it deeply, that is what EN nodules feel like . I think I get respect from my docs bc I am super athletic and outdoorsy and a Doctor so they see the huge change between when I have flare and don’t - hiking and riding horses and martial arts and then I can barely walk for a few weeks. My current flare I have tried indomethacin, steroids and am no better so Tuesday I am back to the drawing board. Last time it got this bad we used orencia which worked. I have also tried plaquenil in the past (didn’t work). I saw another person here who had nerve issues- interesting bc I had autoimmune neuropathy in 2009, it was axonal pattern on my EMG (not demyelinating) with weakness in legs and trunk. Resolved with IVIG. I was so thankful my neurology team got it approved. I was better in a few weeks after treatment. One thing that was also medically relevant was that after the IVIG, I went two years with no EN. The longest I had ever been . I usually get it a couple times a year. I think the IVIG must have also removed the auto antibodies triggering my EN. If IVIG was not so expensive I’d love to try it again for EN. I wish I knew what the trigger was. I’d love to hear anyone else’s stories about things their doctors have tried. I have also done the clean eating , Whole 30 all the way. Just finishing up my Nutrition therapy degree bc I think it is such important part of this.

I have had my first bout of EN, following a strep throat infection, and I have been struggling to get over it. Potassium iodide has calmed down the nodules but I still have aching legs, despite resting. I'm starting to feel like the aches will never go away. Seeing your posts, I am also worried that I will have further bouts of EN. My docs seemed to think it would be a one-off.

I was diagnosed with EN about 4 weeks ago and believe my EN began as a result of taking an antibiotic I was allergic too.

The nodules on my legs have never been very painful, just tender, but I have been experiencing severe pain in my joints that is gradually increasing and spreading to all areas of my body. The pain started in just one elbow, and has now spread to both elbows, wrists, fingers, knees, and ankles. It is completely debilitating and I can barely move without extreme pain. The doctors keep prescribing me short term doses of prednisone which helps, but as soon as I stop taking them, the pain comes back even worse.

Does anyone else have a similar experience that would be willing to share?

Hi, i’m 32 y.o. I got my first flare up of EN when i was 19 y.o, and i continued to get them every year since, for at least once a year and up to 3 times a year, sometimes the flare ups were worse than the other ones. I have done all sorts of blood tests, xray, biopsy and no one can find the underlying cause. What has always helped with the pain and inflammation is Aspirin, i would take the highest dose which i think is 325mg 2 tablets twice a day for no longer than 2 weeks, and it definitely helps, but it’s rough on the stomach. On my last doctor visit, i was prescribed SSKI solution, which i started taking .3ml/ 3 times a day, i can’t tell yet if it’s working since my flare ups just started a few days ago and are getting worse by the day and the SSKI i started taking the day before yesterday, so let’s see what happens, but i’m starting as well the aspirin since i’m in some serious pain. It does feel debilitating not knowing what’s causing this to begin with. I have noticed however that everytime i start taking some sort of suplement products that have a lot of different vitamins and minerals in it, it almost like a trigger for my flare up, but I don’t know if that’s accurate, it’s just my personal observation, maybe someone else can notice if they are doing something different right around the time when getting the flare ups, would really like to know. Thank you and hope this helps anyone else with EN.

Hello @anisoara, @mpw311, @tara09 and @kmisschuck, I would like to welcome you all to Mayo Clinic Connect. Since there was no response for three of you I'm hoping you can connect with each other to find something that works for you. I found an article that is from 2005 in the Journal of the American Board of Family Medicine that may be helpful.

Successful Treatment of Chronic Erythema Nodosum with Vitamin B12
-- https://www.jabfm.org/content/18/6/567

There is a post earlier in this discussion by @beff2468 that may be helpful to read here:
https://connect.mayoclinic.org/discussion/chronic-erythema-nodosum/?pg=1#comment-46294
There was also a post earlier by @jillianm that recommended going gluten free which helped her. Have any of you tried eliminating different foods or going gluten free?