chronic erythema nodosum

@alexahercamp Welcome to connect. I see your a new member. So sorry the Dr's are having a difficult time figuring out what is causing your chronic erythema nodosum. It takes several weeks for that to run it's course. Do you have a Car? I was reading this can be caused from being around a cat that has Cat's scratch fever? It can also be caused by GI issues. Maybe ask to see a GI Dr?
I wish you the Best..
Jackie

@alexahercamp I had EN for years, the only thing that got rid of it was giving up gluten. I dont know if it will help you but that seems to keep mine away.

I had this years ago when I was in high school They ran everything in the world on me. I was in the hospital for a week and a half. Came home the same way as I went in. Except on crutches My legs were swollen black and purple I had so much pain. They had painful nodules all over them etc. Well they finally decided that I had had strep throat before all this happened and had been on antibiotics but they said the antibiotics didn’t kill all the infection and so it then had drained down into my legs. Sounds crazy but I finally got better.

Streptococcal and mycobacterial infections can cause
Erythema nodosum. It is also related to autoimmune and inflammatory diseases.
Throat cultures when you experience sore throat
and upper respiratory symptoms may be good preventative measures in the future.

My experiences with EN began around april or may of 2023. t developed big pus - filled knots which were very painful, not on my legs, but my fore arms .feet and head .They would come to a head, but couldn't get them to drain using epsom salt. I consulted my primary care dr. to get a diagnosis. he thought it was Staph and put me on antibiotics, some of them began to shrink ,but when the meds were done ,they continued to come back- plus some. No one ever performed a culture to find out what the infection was, but kept throwing med after med at them .needless to say,Ikept this infection for 13 mos. i began to be concerned about contracting sepsis or endocarditis or another god-awful outcome. Worsening still I went to the ER . I was admited and remained there for 5 days. I was released with no diagnosis from my DR. or the Infectious disease dr. ,after what must have been 60 bags of antibiotics they referred me to my dermatologist for answers.I made my appt., got my first culture/biopsy scripted and sent home. two weeks later I got my diagnosis.....ERYTHEMA NODOSUM . They said it could be from a new medicine I'd started or an underlying condition I had.?????? now i was wondering about this mystery condition .After appx. 2 mos., they began ti diminish .When they were almost gone, they began again. It was just a few this time, They continue too come and go to this day.will this be a lifelong ordeal ?

EN is uncommon and not all physicians have experience
with management and diagnosis.
Make sure to have a chest X-ray and testing for tuberculosis exposure. Arthritis testing is also indicated.
You should also be screened for inflammatory bowel
symptoms.

I have been struggling with EN for a few years now. I’ve tried many different anti inflammatory medications. They work while i’m taking them and then begin again after I stop. I have gotten blood work done. And i believe i’m healthy in every other way, so i’m not sure if it could be any underlying cause. I wish there was a treatment that could cure me long term. I had taken birth control for 5 years and i learned oral contraceptives could be a cause. I just found this support group so i’m glad to know i’m not battling this alone.

Mine has been on and off for the last few years. I’m dealing with it now for the longest stretch of time.

Infectious EndoCardis started with me while out of the US in October 2024. It showed as extreme fatigue but very little else--(a case of laryngitus and occasional night sweats in the warm climate). I knew better than to visit any of the unsophisticated local docs, and since the fatigue symptoms did not appear life threatening, I toughed it out. Many weeks later returning to the US (with advance scheduled medical appointments), I had blood work done and was admitted to the hospital on December 26. I had infective endocarditus and was severely anemic. I also have an artificial aortic heart valve. Unfortunately, the heart valve (and other sites) were involved in the infection. Hospitalized (UNC Hospital Chapel Hill) for 12 days with various antibiotics tested, I was released on January 12 to home (having lost nearly 30 pounds since October). A PIC IV line was inserted for another 24 days of home IV infusions of Vancomyicin. I'm now on lifelong Levofloxicin 500 mg daily. It's been rough, and I'm pretty sure it's a "life sentence" since there is no way to repair the heart valve (I'm 77). It appears most of the "other sites" are cleared or clearing, but a post treatment echo cardiogram shows the heart valve still has the "vegetation" but is functioning well and shows no advance signs. Hopes are that the antibiotic will keep the bacteria dormant. The infection I have is Granulictella and does not respond to the usual pencilian-family of prescribed teatments (for staph), and I tolerated all of them pretty well-not fun, but acceptable. An interesting note is that my MANY blood cultures were sent to the Mayo Clinic for further testing (and research) and advice.

It is now May 25 and the recovery is slow and steady. Diets focusing first on weight gain, then overlapping and ongoing protein, and finally dietary iron. Even those are going well - especially noting the increased physical and cognitive improvements with the iron diet--the hardest diet and slow to show improvements in blood cells--but I've been told slow is the best and safest way to correct blood iron. Currently I have regained enough weight to be in a good range for my age and body-type.