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07-28-2015, 01:52 AM   #1
Kiwiindubai
 
Join Date: Jul 2015
Location: Dubai, United Arab Emirates

My Support Groups:
Erythema Nodosum

Hi all,
I am on week 5 of my first episode of EN and I am going out of my mind.

Here is a quick timeline:
11 June - one EN appeared a day for about 4 days and then went away.
22 June - About 50 appeared on my legs overnight
22 June - Started 40mg of Prednisone. Stayed on this for 9 days but they kept coming.
29 June - EN has appeared on face, arms and legs
4 July - Saw new gastro who scheduled a colonscopy
10 July - Colonscopy which showed no inflammation. Started Entocort and Asacol 800mg (2 pills, twice a day)
25 July - results of colonoscopy biopsies - still no inflammation. Started Imuran
27 July - about 60 EN spots over my legs, back, arms, eyelid...

Does anyone have any ideas on how to get rid of these or get relief. I am putting lidocaine on them so I can sleep but I am miserable.

I am living in the UAE. I have insurance. My previous gastro is in New Zealand.

Thanks
Lana
07-28-2015, 04:33 PM   #2
lilac
 
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Join Date: Sep 2014

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Hi, EN is common for me. The only thing that has ever cleared it was IV steroids. However, I've been trapped in a cycle of IV steroids, then tapering off oral steroids, only for everything to return once stopped.
07-29-2015, 05:25 AM   #3
Kiwiindubai
 
Join Date: Jul 2015
Location: Dubai, United Arab Emirates

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Hi Lilac,
Thanks for your reply. I hate to say I am pleased someone else has had EN because it is an awful disease but I am relieved I am not the only one.

My gastro hasn't mentioned IV steriods but when he saw me on Saturday (before I started the Imuran) the EN looked like it was going away. Maybe it will disappear when my body gets used to the Imuran.

I am just feeling very housebound because when I get hot I can feel new lumps coming. Hard when I live in Dubai and it is 46 degrees C outside.
07-29-2015, 11:49 AM   #4
Farmwife
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Join Date: Apr 2012
Location: Michigan

My Support Groups:
Hi, sorry to hear about the EN
My 6 year old also suffers with them (she has IBD).
She's had to have steroids also.
2 other things that help are elevating your legs and pressure wraps like ace bandages around your legs.
You don't need to do it tight but tight enough that you feel it's helping.
At first my dd said it hurt but after awhile she said it helped....a lot.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
08-02-2015, 04:29 AM   #5
Kiwiindubai
 
Join Date: Jul 2015
Location: Dubai, United Arab Emirates

My Support Groups:
Thanks Farmwife. I have been trying to keep my legs up and keep out of the heat.

Fortunately the Imuran seems to have kicked in and I only have 3 spots. Fingers crossed!
08-02-2015, 07:25 AM   #6
Farmwife
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Join Date: Apr 2012
Location: Michigan

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I'm glad it's getting better.
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