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Dealing with Erythema Nodosum

Started by Kimberly Williams · · 👁 4 views · 28 replies

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Participants Kimberly Williamsgranitebadger25Casey Palmer5Kevin White5placidcyclistJustin Davis2Kate Wilson7Joshua Murphy61jadetinker85
Kimberly Williams Kimberly Williams MemberOP
20 messages
joined Aug 2004
#1 ·
I dealt with this illness a few years back, and honestly, there’s still so little we actually know about what triggers it. For me, it showed up as these random bruises—hematomas, really—popping up on my legs and other parts of my body out of nowhere. They would just swell up if I even tried to exert myself slightly. I couldn't even manage a walk or go swimming (there goes my summer, ugh) for about three or four months, and doctors told me I had one of the milder cases.

Up until then, I was pretty much a picture of health (I was only 19 at the time), aside from a brutal sore throat a couple of months before the illness hit, which landed me on penicillin and a month's worth of Advil.

The doctors were all in agreement on the diagnosis, but as I mentioned, the actual cause remains a mystery. It sounds a bit ridiculous to most people, but their theory is that the throat infection never fully cleared up, which then manifested as erythema nodosum—basically those bruises on my legs. To be honest, it sounds a bit far-fetched to me; I just don't see the connection between a sore throat and bruising on my legs.😕
Well, I suppose when it comes to the human body, anything can happen. Has anyone else gone through something similar? What did your doctors suspect was the trigger, and did the illness ever come back? (I have to admit, I've become a total hypochondriac; if I see a single bruise on my leg now, I freak out and start convinced myself I just bumped into a piece of furniture by accident! 🙄)
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#2 ·
Erythema nodosum isn't a disease itself; it’s just a symptom... and a highly non-specific one at that.

It can pop up occasionally alongside a sore throat, but these days, it's most frequently seen as a sign of sarcoidosis—especially during this spring/summer season.

I'm not sure if you had any lung imaging done back when you were dealing with the erythema nodosum? Sarcoidosis, for the most part, targets the lungs first and foremost.
Casey Palmer5 Casey Palmer5 Regular
470 messages
joined Jan 2016
#3 ·
It’s totally possible it was just a reaction to a streptococcus infection, like granitebadger25 mentioned.

Either way, I'm really hoping it has nothing to do with sarcoidosis...
Kevin White5 Kevin White5 Active Member
96 messages
joined Mar 2006
#4 ·
Look, first off, it’ll pass. She should pull herself together in about six weeks at most. Just keep in mind she's prone to relapses, and when an episode hits, it usually drags on for two or three weeks.
Kevin White5 Kevin White5 Active Member
96 messages
joined Mar 2006
#5 ·
Alright, let's get into it. What actually triggers erythema nodosum?
It’s a pretty vague condition if you can even call it that. It usually shows up on the extensor surfaces, most often on the shins. It starts out red and then turns a bruised, livid purple.

Triggers can range from certain medications, like sulfonamides, to a recent streptococcus infection, some viruses, or even sarcoidosis.

It tends to hit women more frequently.
Kevin White5 Kevin White5 Active Member
96 messages
joined Mar 2006
#6 ·
Rest and removing whatever is triggering this is necessary. That means treating the streptococcus infection or taking medication... Systemic treatment typically involves salicylates or NSAIDs (like indomethacin). You could also look into using a 5% potassium iodide solution.
Corticosteroids work locally....

As for why this happens... it’s likely due to antigen-antibody complexes depositing in the skin...

That's all I've got... (based on my recent dermatology exam)

My advice... check your current medications and get a chest X-ray to rule out sarcoidosis (hopefully it's not that)

Best,
👋
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#7 ·
Sarcoidosis isn't even that devastating of a diagnosis, especially when it presents alongside erythema nodosum 😉 (which typically just runs its course, clears up on its own, and stays gone—you really just need more frequent checkups)
Casey Palmer5 Casey Palmer5 Regular
470 messages
joined Jan 2016
#8 ·
Man, I don't know...

Honestly, my allergies feel like winning the jackpot compared to sarcoidosis, at least based on everything I remember reading about what that disease actually does...
Kevin White5 Kevin White5 Active Member
96 messages
joined Mar 2006
#9 ·
Hmm... I haven't seen many cases of sarcoidosis myself, though I did happen to lead a seminar on it once. It’s definitely not a joke. Neurosarcoidosis is rare, but it exists. And besides lung involvement—like hilar lymphadenopathy—sarcoidosis can hit just about any organ since it's an autoimmune disease.
But we shouldn't be dwelling on sarcoidosis right now. We need to focus on what our forum member actually has from that list. Let's try to pin down what might be causing this erythema nodosum.

Personally, I think it's more likely to be streptococcus or perhaps some medication triggering antibodies that settle in the skin...

Ugh. Kimberly Williams, let us know what happened so we aren't just guessing here.
Kimberly Williams Kimberly Williams MemberOP
20 messages
joined Aug 2004
#10 ·
So here's the deal: I went in for full blood work and everything came back perfect. Even my doctor was impressed by how clear my lungs looked, but then there's this throat issue of mine... hmmm... My voice tends to crack quite a bit, especially if I've been singing late into the night 😁 , and whenever I catch a cold or the flu, my throat takes the brunt of it—swallowing becomes a total nightmare
. Since all my tests were normal, the doctors figured the erythema popped up because of that throat inflammation I had. They weren't 100% sure, though, since my throat wasn't actually hurting at the time (it was summer, but the inflammation happened back in February), so technically I felt perfectly fine, even if I did have those symptoms 😕

It’s true I was pretty exhausted due to some other things going on back then (I was dealing with some personal stuff, honestly one of the tougher periods of my life), but my medical results were still solid
. Apparently, it hits women more often, and goodness knows we go through enough as it is 🙂

Thankfully, the erythema hasn't come back. Like I said, I've never really had major health issues aside from this occasional throat trouble... but what exactly is sarcoidosis?
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#11 ·
Kevin White5 said:Well... I haven't seen endless cases of sarcoidosis, but I did happen to lead a seminar on the subject. It's certainly not a trivial matter. Especially neurosarcoidosis (which is rare, but still exists). Not to mention that besides lung involvement (hilar lymphadenopathy), sarcoidosis can affect various other organs... (it's an autoimmune disease)
But in my view, we shouldn't be focusing on sarcoidosis right now. We should be looking at what our fellow forum member is experiencing from the list above—specifically, identifying potential causes for the erythema nodosum.

I disagree. There absolutely needs to be discussion regarding sarcoidosis because it is the most common cause of erythema nodosum... it is entirely possible this user dealt with undiagnosed sarcoidosis a few years ago. 😉
So, I am going to elaborate on that point further.

Sarcoidosis is not an autoimmune disease (there are no autoantibodies).
It is a disease of unknown etiology that can impact multiple organs, though it most frequently targets the lungs.
There is a specific presentation known as acute sarcoidosis, which typically emerges during the spring and summer in young people and is linked to erythema nodosum; it even carries its own designation—Loeffgren syndrome.
In this syndrome, in addition to hilar lymph nodes, the lacrimal and salivary glands may also be affected... throat discomfort is frequent, and one might occasionally see small white spots (mucous plaques) on the pharynx or palatal arches. These are often misdiagnosed as tonsillopharyngitis—especially if there is colonization by a group of streptococcus in a swab, leading to a mistaken diagnosis of streptococcus tonsillitis.

Loeffgren syndrome is intense (due to the systemic symptoms and the erythema nodosum), but unlike neurosarcoidosis, it isn't associated with malignant forms of the disease. The prognosis is good and it resolves on its own (with rest and symptomatic treatment, such as indomethacin)... but recognition is vital. 😉
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#12 ·
Kimberly Williams said:It went like this: I had complete blood work done, and everything came back normal. My lungs were crystal clear—even my doctor was impressed—but then there was my throat... hmmm... I often deal with my voice "cracking," especially if I've been singing a bit too much at night 😁 , and whenever I catch a cold or the flu, my throat takes the brunt of it; swallowing becomes absolutely agonizing...
Since my labs were fine, the doctors assumed the erythema appeared because of that throat inflammation I had. They weren't entirely certain, though, because my throat wasn't actually hurting at the time (it was summer, but I had the inflammation back in February), so technically I was healthy during that period, even if I was dealing with those symptoms 😕

It’s true that I was pretty exhausted due to other things going on back then (I was facing some issues at the time; it was actually one of the tougher periods of my life), but again, the lab results were normal.
It seems it hits women more often, and God knows what else we have to deal with 🙂

The Srića erythema hasn't returned, and as I mentioned, I've never had major health problems aside from that occasional throat issue... but what exactly is sarcoidosis?

I just noticed that Kimberly Williams was posting around the same time I was.

So, here is the situation:
A lung scan in Loeffgren syndrome (a type of sarcoidosis linked to erythema nodosum) shows enlarged hilar lymph nodes—which can be quite pronounced sometimes, or they might only show up on CT scans... so it would be wise to have an experienced radiologist take a look.

The timing of the symptoms, the fatigue, and these vague throat changes would fit the profile... standard blood tests are usually normal, except perhaps for a slightly low lymphocyte count in the differential. Usually, ACE levels are elevated in sarcoidosis, especially the acute form; I wonder if they tested for that?

Look, if you were dealing with the acute form of sarcoidosis, don't sweat it—it clearly resolved on its own, which is how that form typically behaves. The only important thing is to mention it to your doctor if you experience general symptoms like fatigue, coughing, or skin changes again in a few years... so you aren't left guessing and can ensure the diagnostic process is properly directed. 😉
Kimberly Williams Kimberly Williams MemberOP
20 messages
joined Aug 2004
#13 ·
It’s really common to deal with throat discomfort, and sometimes you'll spot tiny white patches on the tonsils or the roof of your mouth. People often misread those mucus plugs as tonsillopharyngitis—especially if there's any streptococcus flora present in a swab—leading to a totally wrong diagnosis of strep throat.

Honestly, granitebadger25, I had plenty of those white spots on my tonsils myself. Jesus, looking back now at my old GP—who was such a gem—when I told her how suspicious those spots looked, she actually tried to convince me they were just bits of unfermented food 😲 😕 . I just gave her this blank stare, like, "Do you seriously think I don't brush my teeth???"

So, it's possible I had sarcoidosis without even realizing it. Thanks so much for all the answers; it's a relief to hear that the acute form isn't quite as scary as it sounds. I honestly thought it was just a stubborn sore throat, and truthfully, I haven't had any issues since.
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#14 ·
Casey Palmer5 said:I don't know about that...

Compared to sarcoidosis—at least based on what I recall from the clinical descriptions—my allergies feel like winning the jackpot.

The issue is that textbook descriptions of diseases are almost always lifted directly from American medical literature.😉
In reality, the progression and prognosis of sarcoidosis depend heavily on race and geography.
For instance, severe forms of the disease are prevalent among Black Americans in the United States, but not in Africa. You see it in Puerto Ricans living in New York City, but not those elsewhere in the Americas. It shows up in Irish women living in New York City, yet not in those residing in Ireland itself.
The highest incidence rates are actually found in Scandinavia, but there, the disease presents in a completely benign form—specifically the acute type with erythema nodosum.
Conversely, they don't see erythema nodosum at all in Japan.

It’s a complete circus, and nobody can explain why. 😕

In the United States, the "Scandinavian" type is currently the most common presentation. 😉
Kimberly Williams Kimberly Williams MemberOP
20 messages
joined Aug 2004
#15 ·
Take severe forms of sarcoidosis, for instance—you see it among Black Americans in the North, but not in Africa... Or Puerto Ricans living in New York City, but not those elsewhere in the States... Even Irish women living in New York City, but not those back in Ireland...


John Doe, I actually ended up with it because I'm a Woman from Miami living in Washington, D.C. 😛 John Doe, just kidding, ladies! You all are awesome, thanks a million!
Kevin White5 Kevin White5 Active Member
96 messages
joined Mar 2006
#16 ·
granitebadger25..thanks for the minor corrections...that sarcoidosis thing is an extremely interesting disease...turns out I just found out it's mostly treated as having an unknown cause🙂

By the way, do you know the approximate prevalence rate in the US population? (Assuming there aren't many studies on it, unless I'm wrong)
And what's it most commonly linked to here in America?
thx
😉
Casey Palmer5 Casey Palmer5 Regular
470 messages
joined Jan 2016
#17 ·
granitebadger25 said:The reason is that textbook descriptions of diseases are almost always just copied straight from American medical literature.😉
Basically, how sarcoidosis progresses and its overall prognosis depends heavily on race and the specific geographic region where it pops up.
For instance, you see severe forms of sarcoidosis in Black populations in the United States, but not in Africa... Puerto Ricans living in New York City show it, but not those in other parts of America... Irish women living in New York City exhibit it, but not those back home in Ireland...
The highest rates of sarcoidosis are actually found in Scandinavia, but there, the disease takes on a completely benign form—the acute type with erythema nodosum.
On the flip side, they don't see erythema nodosum at all in Japan.

It's a total circus, and nobody really knows why... 😕

In the United States, the "Scandinavian" type is currently the most common version we see.😉

Man, this is an extremely interesting disease. You see? Even pulmonology can be pretty fascinating if you look closely...😁
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#18 ·
Kevin White5 said:...wow, that sarcoidosis is an extremely interesting disease...

Yes, it is highly interesting, both from a diagnostic standpoint and an epidemiological one. /A minor side note for you: if you actually have an interest and the aptitude for diagnostics, you should aim toward systemic diseases—they require mastery over all fields of medicine and represent the true challenge for a diagnostician./

...and tell me, do you know the prevalence of sarcoidosis in our population (roughly, since I assume there aren't many studies, unless I am mistaken?)
And what is it most commonly associated with here?
thanks
😉

The data is in the latest internal medicine textbook (I just checked)... for the United States, it cites a figure of 3-11 per 100,000 inhabitants. The geographic distribution of sarcoidosis here aligns with the patterns seen across Europe... meaning, it is more prevalent in the north and less common near the Mediterranean.

However, a significant amount of sarcoidosis likely goes unrecognized because physicians aren't sensitized to such diverse symptoms. Instead, they tend to treat them as isolated ailments rather than unifying them under a single diagnosis. This is a recurring issue with other systemic diseases as well. It frequently happens that a patient undergoes a mountain of tests in private specialist clinics, only to be left clueless about the results because no one is available to connect the dots and interpret them properly.

Here is an example... in individuals who develop (or have had) calcium carbonate kidney stones without a hereditary predisposition, one should also suspect sarcoidosis.😉 ... though I am not sure if further investigation is typically performed in those cases.

Admittedly, all these systemic diseases are relatively rare, so it is hardly surprising that they go undetected.😉
granitebadger25 granitebadger25 Member
46 messages
joined Mar 2004
#19 ·
Just to be absolutely clear, this isn't just happening here.
(I don't really have the energy for anything productive right now, so I'm going on a bit of a rant, sorry.)

For instance, in Scandinavia, this disease is quite prevalent, affecting more than 60 out of every 100,000 people. It most often presents in its acute form—which is much easier to identify than the chronic version—and their doctors are well-versed in spotting it. There is also a strange correlation with sun exposure; cases spike during the summer months when people are out in the heat (likely due to Vitamin D production, which is further intensified by the synthesis within sarcoidosis granulomas). Essentially, when Swedish men go on vacation to warmer climates, they frequently return presenting with sarcoidosis symptoms. It’s a known phenomenon there; it isn't considered unusual, almost like an epidemic.😁

And then, you get these ridiculous misunderstandings. There was that year when the bubonic plague broke out in India (I think it was around 1995, though I can't be certain), and a group of Swedish men returned from their trip to India. Within a few days, one of them developed characteristic erythema nodosum, watery eyes, and enlarged hilar lymph nodes—classic signs. But of course, everyone immediately jumped to the conclusion that it was the plague. The entire group was stuck in quarantine, the whole of Sweden was in an uproar, bordering on a state of emergency. At the Karolinska Institute, they were nearly walking around in hazmat suits, only for it to turn out to be their standard, run-of-the-mill sarcoidosis.😁
This happens to other people too.😉

So, Kimberly Williams, since you're a Woman from Miami living in Washington, D.C., you don't have much to worry about, but just in case, maybe don't move to India.😁
Kevin White5 Kevin White5 Active Member
96 messages
joined Mar 2006
#20 ·
A bit off-topic here... this thread was actually pretty useful...
needs more engagement
🙂

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