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Hi,

I have had Crohn's for about 8 years, but this is the first time I've had Erythema Nodosum.  It started about a week ago with flu-like symptoms (body aches; nausea; diarrhea; fever etc.), and then a couple days ago came the painful red areas on my legs that look and feel like raised bruises.  My gastro said this is E. Nodosum.  At this point, we don't know if it was triggered by a hypersensitivity to 6-MP that I recently started; OR if it was triggered by a Crohn's flare.

I've read on the Internet that these inflammed areas can take 3-6 weeks to go away.  Do any of you know if the other symptoms (nausea, diarrhea etc.) also last that long?  (I sure hope not!!!!!)

Also, how does your gastro treat this?  Does it just have to go away on its own?  Can it come back again?

I'd sure appreciate your input, and also sharing of your experiences with it!!  Thanks.

 Reply posted for concerned.

Hi Concerned,

Thank you for your input.  I am so sorry to hear about the horrendous suffering your daughter had to go through before they finally found out what was wrong.  It amazes me how much it takes, sometimes, before a person can get a referral to a specialist!!  Geeeez!!  Getting a diagnosis like UC is serious, but fortunately for the both of you, your daughter now has a GI, you now know what's wrong, and the proper treatment can be given and monitored. 

Take care---

Marie 053

 Reply posted for Marie 053.

my daughter was diagnosed with EN also last Oct.  she was very sick with bloody diarrhea, vomiting, the works and after being in and out of ER several times, finally referred to a GI.  It wasn't until she was diagnossed with UC that they think the EN was related.  Due to the extreme inflammation within her body for over 2 months.  Before being diagnosed with UC her regular dr just told her to take ibruprofin and hot compresses on the bruised spots.  That was just 'fueling" the inflammation!  It took months to finally get rid of all the spots, which were confined to the shins and feet.  I think she had around 20 spots and it was VERY painful for her to walk as well.  Once diagnosed with UC and put on prednisone the symptoms started to get less painful and spots stopped appearing.  She also went to the wound clinic for treatment and bandaging for at least a couple of months after.  She has a few nasty scars, but what a story she has to tell about her ordeal with UC.  It's never a dull moment!  Good luck to all who suffer from this nasty disease.  I hope a cure can be found soon.

 Reply posted for marcie.

Hi Marcie,

I've never had pyoderms gangrenosum, so don't anything about the symptoms that go along with it.  You might want to post a reply to chelle on this thread since she's had it.

As for ED, the lesions looked and felt just like bruises, and were mostly on my shins.  Some of them were raised, and all started off reddish in color. 

Hope this helps.  Take care.

 Reply posted for Marie 053.

My mom, who had colitis, got those bumps under the skin on her shins and the doctor said it might be ED, but then a lesion broke out on her left ankle and the doctor thought it might be pyoderma gangrenosum (sp?).  Whenever she was weaned off of prednisone, it would flare up again.  She went to a wound care specialist and he was able to clear it up and get her off the steroids.  Now she just has sore shins and occasional diarrhea (as well as nausea, as she has an ulcer).  The doctors aren't sure if it was PG or not.  Does that sound right?

 Reply posted for chelle.

Hi,

I am so sorry to hear about all you've been through!!!  My heart goes out to you. 

Thanks so much for the "heads up" about watching my ED lesions to make sure they don't actually become pyoderms gangrenosum.  I'll definitely keep an eye open!  So far they seem to be turning color like a bruise; the tenderness and swelling has subsided; and them appear to be going away.

How long have you been on 6-MP?  Do you take the generic form?  Sure hope you find something else that works better for you!

Marie 053

 Reply posted for Marie 053.

Just thought I'd update everyone on what happened.  According to my gastro (and per research references) I am one of those extremely RARE ones in which 6-MP actually caused my E. Nodosum and flu symptoms (fever, diarrhea, cramping, overall body aches, nausea, headache, and fatigue---I think that about covers it)!!!  I have a hypersensitivity to mercaptopurine, even though I tested out fine with the TPMT enzyme.  Doctors learn something new every day.

After stopping the 6-MP on 8/7, my E. Nodosum lesions and flu symptoms have subsided greatly.

Thanks to all of you for your responses to my original posting!!

Marie 053

 Reply posted for Marie 053.

I have had Crohn's disease for over 20 years. I started deveolping the ED this March for the first time. I was told by my Gastro doc that ED usually coincides with a flare up of the Crohn's. However, I wasn't experiencing any Crohn's symptoms at the time.

I was being treated with 40 mg of prednisone. Every time I was weaned off the steroids the lumps came back. The lumps I had originally have gone but I have dark shadows on my legs where they were.

On June 7th, I got a flaming red patch on the inside of my right ankle. By that Monday it blistered. It was forming black spots and just kept spreading. It was horribly painful. I was in and out of the emergency room 3 times that week. On June 17th I was hospitalized and had to stay until June 23rd. I had to see an infectios disease doc & a dermatologist. They are saying it is probably pyoderms gangrenosum - related to the Crohn's. I don't mean to scare you, but if the lumps start out as aflaming red patch that starts to develop black spots - make sure you get it looked at. By the time I was hospitalized I could barely walk from the pain.

I still have not healed from that. I am on 40 mg of prednisone (down from 60 mg) and am using a cortisone cream. My gastro doc is looking into changing my other meds (currently on 6-MP).

 Reply posted for ducks.

Did you also have the flu-like symptoms with it?  I know that some of those symptoms are typical of a Crohn's flare, but they also typically accompany E. Nodosum.

Did the break-out areas occur on your legs and hurt like bruises?

I really appreciate your input!!  I have a fantastic gastro, and while he knows that E. Nodosum can occur with IBD, he hasn't heard of 6-MPs triggering E. Nodosum.

 Reply posted for Marie 053.

Your symptoms sound very familiar to what I experienced several years ago shortly after I began taking 6 MP.  I never actually knew what it was called.  At the time I went to see my PCP rather than my GI since I assumed it had nothing to do with my Crohn's.  He said it looked like an allergy to something.  When we ruled out that I hadn't come in contact with anything like poison ivy, he asked if I was on any new meds.  I told him I had recently started taking 6MP for my crohn's.  He suggested that I try discontinuing it and see what happens.  Sure enough when I stopped taking the drug, it cleared up right away.  My brother who also has crohn's had very similar symptoms when he took Asacol.  His skin cleared up as soon as he stopped taking it.