Diagnosed with Erythema Nodosum---Questions

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 8/10/2008 2:51 PM (GMT -7)   
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.
53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic to Pentasa and Entocort.  FINALLY started Mercaptopurine on 7/23/08, but then had to stop on 8/7 due to flu-like symptoms.


potatoqwn
Regular Member


Date Joined Jan 2006
Total Posts : 355
   Posted 8/10/2008 5:09 PM (GMT -7)   
I have had this too although not in several years now. I have to tell you that mine would last a couple of months each. I sure hope yours do not take that long to go away. When they do go away they will leave a bruise like mark for many months and then go away completely.

I think I started getting them around 8 years after I was diagnosed too. I had no idea what was going on. They would come on when my symptoms were particularly bad. I was in a constant long, bad 15 year flare with unrelenting symptoms, so I can't say for sure why they came and then left at all exactly. My doctor said there was no particular medication for them, but that getting the Crohn's under control would make them go away. I was on every possible medication to try to control the Crohn's and so I cannot say what if any one could have triggered it. I really just think they are something that some of us get with Crohn's.

I am in a remission now for two years with Humira and I haven't had one since. I sure hope you feel better soon.

WantRelief
Regular Member


Date Joined Feb 2006
Total Posts : 261
   Posted 8/10/2008 6:52 PM (GMT -7)   
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.

31year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Unable/Unwilling to use immunosuppressents due to Melanoma history in 2000.
Illeocolonic Resection 1/08  (18 inches of terminal illeum, illeocecal valve, right colon and appendix)
Current Meds: Pentasa, Fosomax, Iron, Vitamin b12 injections, Vicodin, Flagyl


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/11/2008 6:29 AM (GMT -7)   
Yep, I've had them! Not fun...especially when I had toddlers that were constantly bumping into my legs!

Personally, I dont think the nausea and D are symptoms of the EN....they are symptoms of your flare, and once you get your gut calmed down, your EN will go away. I was put on 60 mg. of pred., and that seemed to help it.

RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 8/11/2008 6:32 AM (GMT -7)   
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.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 8/13/2008 8:37 PM (GMT -7)   
shocked 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!!!  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 for your responses to my original posting!!


53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and now 6-MP!  I had started Mercaptopurine on 7/23/08, but had to stop on 8/7 due to it causing E. Nodosum with flu-like symptoms.  VERY RARE causation!!


wanthealth
Regular Member


Date Joined Feb 2008
Total Posts : 78
   Posted 8/14/2008 5:23 AM (GMT -7)   
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

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 8/14/2008 4:12 PM (GMT -7)   

Hi Moodindigo,

Thanks so much for responding!!  I am fascinated to know of others who also got EN from 6-MP.  I also had a fever with mine---plus diarrhea, cramping, overall body aches, nausea, headache, and fatigue.  (I think that about covers it!!)

There was a very fortunate and lucky circumstance that occurred at the same time that this was happening to me----He had one other patient at the same time that was also experiencing this!!  This great timing is what led my gastro. to begin making the connection between my EN and 6-MP.  I had only been on the 6-MP for about 2 weeks when the EN appeared.  Looking back though, my flu symptoms actually started about 7 days after starting the 6-MP.

Just curious---are you now on any meds for your IBD?  My gastro. isn't sure yet what he's going to do.  As you can see in my signature info below, I'm allergic or have sensitivities to just about all that's available for Crohn's.

Thanks again, Moodindigo!

Blossom

 

 

 


53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and now 6-MP!  I had started Mercaptopurine on 7/23/08, but had to stop on 8/7 due to it causing E. Nodosum with flu-like symptoms.  VERY RARE causation!!


wanthealth
Regular Member


Date Joined Feb 2008
Total Posts : 78
   Posted 8/14/2008 6:59 PM (GMT -7)   
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

RedAdmin
Veteran Member


Date Joined Aug 2003
Total Posts : 1017
   Posted 8/15/2008 6:07 AM (GMT -7)   
I take Cade and Imuran for the CD.
Red (Lee Ann)
 Happy Bunny 
      When life gives you lemons, squirt juice in your enemy's eyes.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 8/15/2008 7:18 AM (GMT -7)   

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! yeah

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


53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and now 6-MP!  I had started Mercaptopurine on 7/23/08, but had to stop on 8/7 due to it causing E. Nodosum with flu-like symptoms.  VERY RARE causation!!


wanthealth
Regular Member


Date Joined Feb 2008
Total Posts : 78
   Posted 8/15/2008 1:08 PM (GMT -7)   
Hi Blossom,

Even though your outward symptoms are mild, a stricture at some point can lead to obstruction. As much as a medication hater that I am, I would think it would be a good idea to be on something to try to prevent that scenario. I can't believe I'm saying that because at almost every visit to my GI he practically yells at me to take something---anything! I've taken many drugs over the years and have gotten more bad effects than good ones.

Thanks for bringing to my attention the question of the longterm use of Entocort. I will bring that up at my next visit. I already have osteoporosis---don't know what else I could be in for.
Moodindigo.

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 8/15/2008 2:28 PM (GMT -7)   

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


53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and now 6-MP!  I had started Mercaptopurine on 7/23/08, but had to stop on 8/7 due to it causing E. Nodosum with flu-like symptoms.  VERY RARE causation!!


wanthealth
Regular Member


Date Joined Feb 2008
Total Posts : 78
   Posted 8/15/2008 4:48 PM (GMT -7)   
Thanks Blossom,
I checked out the CCFA site and other entocort sites.  I learned that "continual treatment for more than 3 months has not been shown to provide clinical benefit".  Apparently it's not a maintenance drug contrary to what my doctor thinks, though for me it seems to be very helpful.   I've been on and off it for a number of years.  By the way, the rate of skin rashes was 6%.  For sure I'll be questioning my doctor at my next visit.
 
If you do wind up at one of the large medical centers I'd be interested to know what they recommend.  I went to one of the top rated GI's in my area for a second opinion about starting Humira and he told me without hesitation that I shoud take it.  Noone has a crystal ball!
 
Thanks again for your suggestions.
Moodindigo
 
 
 

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 8/17/2008 11:02 AM (GMT -7)   

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


53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and now 6-MP!  I had started Mercaptopurine on 7/23/08, but had to stop on 8/7 due to it causing E. Nodosum with flu-like symptoms.  VERY RARE causation!!


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 1/2/2009 4:09 PM (GMT -7)   
Hi all (and Moodindigo)!
 
I don't know if anyone is still following this thread that I originally started back in August 2008, but I wanted to update my outcome.
 
Since I was allergic (or had hypersensitivity) to all the other Crohn's meds I tried---including 6mp which gave me Erythema Nodosum---my GI and I weren't sure what we wanted to do next.  My GI had considered sending me to an IBD center at a research university for an evaluation first, to make sure there weren't any other alternatives, however, he knew they'd recommend trying biologics. 
 
The idea of taking biologics was VERY scary to me, considering the "bad luck" I'd had with the other meds.  However, my GI and I didn't really see any other alternative, and I finally accepted the choice.  I started on Humira in early December, and so far I haven't had any bad side effects.  HOORAY!  I'm hoping that my body will continue to accept this medication.
 
Moodindigo---if you're reading this, I'm wondering whatever became of your GI appointment to discuss long-term Entocort.  I'd love to hear from you.
 
Take care everyone, and thanks again for your input and support!
53 year old female;
 
Have had Crohn's of terminal ileum for 8 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and now 6-MP!  I had started Mercaptopurine on 7/23/08, but had to stop on 8/7 due to it causing E. Nodosum with flu-like symptoms.  VERY RARE causation!!


wanthealth
Regular Member


Date Joined Feb 2008
Total Posts : 78
   Posted 1/4/2009 8:00 PM (GMT -7)   
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
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 1:54 AM (GMT -7)
There are a total of 2,733,979 posts in 301,164 threads.
View Active Threads


Who's Online
This forum has 151298 registered members. Please welcome our newest member, FrankByMonster.
208 Guest(s), 2 Registered Member(s) are currently online.  Details
THE HAPPY TURTLE, Stetsonva


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer