Diagnosed with Erythema Nodosum---Questions

Although I've had Crohn's for 8 years, 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 of days ago I got 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.

I've dealt with E-Nodosum since before my official Crohn's diagnosis.  The horrible, painful red lumps/bumps were my first symptom of what was to come.....CD.   The only time they actually got better was when I was on high doses of Prednisone.  Anytime I would get below 20mg they would come back again.  Finally after dealing with CD for 3yrs I had my bowel resection.  It's been almost 7months and so far I haven't had to deal with the EN again.  I did get some steroid cream from my dermatologist that helped the bumps not get as big as they would normally get without the cream but other than prednisone and the resection nothing else works.

The E-Nodosum is because you have an infection in your body. When you get your flare calmed down they will clear up. I dealth with them for over 6 months, ran out of places they had not been. Seemed they would not come back where they had been before, kinda interesting. Once I got myself under control again, they just went away and have not returned.

My dermatologist also gave me some cream, did not even make me feel better. My GP said that he did not know whey my derma did that. Said I needed to get under control. Turns out the GP was right and the derma just wanted to make me feel better. I have always felt better knowing the truth not being placated.

The best comfort I found was Sea Salt baths, hot as I could stand with at least 1 pound of salt, have gone up to 3 pounds. It eased the joints and the bumps. Could not really tell any help from Epsom Salt.

Good luck.

Blossom,
I am another one of the rare individuals who got EN from 6mp. In my case I had fever also. My doctor was very surprised but it was one drug side effect that he could actually see. So many times I'm not sure if he believes me when I report pain, aches etc. that are not visible. My case of EN resolved shortly after I stopped the 6mp. (I had taken it for less than a week.) You are the first person I've heard of who had the same side effect ------pretty rare.
Moodindigo

Hi Blossom,
Right now I seem to be tolerating Entocort. I too am allergic to Pentasa. I get skin issues with many drugs....including the contrast dye called Optiray. Huge rash lasting almost a month. My latest experience with a drug reaction was with Humira. I developed a severe case of psoriasis, a pretty severe skin rash, which has now mostly subsided after some intense therapy with ointments, baths, UV lights and more ointments. My doctor thinks I must have a predisposition to psoriasis which was triggered by the Humira. However I never had it before.

Psoriasis is also a pretty rare side effect especially since Humira is a drug that's used to treat psoriasis. Almost makes no sense. Although 6mp is another immune suppressant which should theoretically suppress EN rather than cause it. Much to learn about the immune system!

What symptoms do you get with Entocort? Perhaps you could try the biologics. Many people do extremely well on them. Someday they'll figure out which of us will do well on the different drugs without us having to get sick first.

I've had three resections and am grateful to be functioning with entocort. You were lucky to have your GI so responsive to the EN. Many doctors would say there's no connection to the 6mp.

Hope you find something that works with no side effects.
Moodindigo

Hi Moodindigo,

Wow, the rashes you've gotten from medications sound pretty bad!  So sorry to hear you had to go through all that!!  Glad to hear that Endocort has been working well for you.  I've heard that since it's a corticosteroid, longterm use is not recommended.  Will your GI be putting you on something else down the road?

I agree with you that it's so weird that some of the meds cause some of the things that they treat!  An example that happened to me is that I broke out in an itchy rash on my back when I tried taking Entocort---yet it's a type of steroid, and steroids generally HELP with rashes, not cause them!?

I recently read a research study about 5 individuals with hypersensitivity to alzathioprine (and 6-MP).  They tested out fine regarding their TPMT enzyme levels, which means they had the proper enzymes to properly metabolize the meds.  So, the study indicates that their hypersensitivity reaction (of EN and pustules) may be to the medication's metabolite (waste byproduct when the body breaks down the meds).

Thanks for your suggestion about the biologics.  My GI doc doesn't want to try that yet, probably because the risks of the biologics are greater than the severity of my disease.  I have moderately severe Crohn's (inflammation and strictering of my terminal ileum), but my outward symptoms are quite mild compared to others.  Sorry to hear you've had 3 resections already.

Yes, my GI doc is fantastic.  We have a great rapport, and I feel very fortunate to have him!  Of course, both he and I reading about case studies showing a link between 6-MP and EN helps!

Yes, won't that be wonderful when they narrow down the different variations of IBD, and which individuals will do well on what meds.  Hopefully that will be in our lifetime!

Blossom

Hi Moodindigo,

 

Thanks for pointing out about a stricture possibly leading to an obstruction.  That has been one of my biggest concerns, and at the same time I’m really feeling “gun shy” about meds right now.  I know I have to do something, though.  My GI said he may end up sending me to an IBD center at a research university for an evaluation.

 

Your GI may state a different timeframe, but my GI said that the normal length of time to be on Entocort is 4-6 weeks.  The CCFA website also has some information about Entocort---you can just go to their website (it’s a .org) and then type in “Entocort” in the search area (near the bottom, left side of the page).  It discusses such things as potential side effects, as well as the need to slowly taper off the Entocort.  Generally, a person does this at the same time they start another non-steroidal medication.  With your sensitivities and/or allergies to so many other IBD medications, I’m wondering what else they would try you on.

 

Blossom

Hi Moodindigo,

After your next appointment and your discussion about Entocort, I'm curious as to if your doctor will still keep you on it indefinitely.

It may be awhile before my GI makes a decision as to whether or not to send me out for an evaluation, but when he makes that decision I'll post it here.  For now, I think he's waiting for my EN symptoms to go away, and is also monitoring my marginally elevated lipase (pancreas).

Take care and I'll keep in touch.

Blossom

Hi Blossom,
I've been preoccupied with family so I had to put off my response. What good news you responded so well to Humira! I hope it continues for you. I had a few good months and then it stopped working---however I would have had to stop because of the Psoriasis.

I'm still taking Entocort and while it's not perfect, it's good enough. My doctor seems to think you can take it indefinately. I'll be seeing him again soon and will question him again. I always have some concern in the back of my mind. I know that most of the steroid stays in the gut (from 80-90 %). I would hate to have to stop taking it.

I just learned about a child with CD who also got Psoriasis from Humira. There are very few of us ---it seems not enough for Abbot to report it.

I'm not looking to try any new drugs right now, but you know when conditions change you can get desperate enough to try anything.

Again, so happy for your success. Keep it up!
Moodindigo