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Erythema Nodosum advice

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Posted 8/27/2009 1:35 PM (GMT 0)
I have been dealing with erythema nodosum on and off for a few months.  My GI wants to send me to a Derm, but I have read others said all they got from a Derm was a cream that didn't work.  Does anyone have any advice on how to deal with this and what I can do to get some relief?  Should I spend the money and see the Derm?

Thanks!

Diagnosed Feb 2009.  Currently taking: Pentasa (500mg) 8 pills a day, Humira every other week.  Xanax as needed.  Been on Prednisone off and on since Feb.

Posted 8/27/2009 1:47 PM (GMT 0)

I suffered with them about 1 year ago, my GI doc put me on prednisone for a few months and sent me to derm...but she didnt do anything amazing, they eventually went away...

good luck :-))

Kelly

Posted 8/27/2009 2:20 PM (GMT 0)
My son's GI put him on Prednisone to get rid of the erythema nodosum.  It worked, but it took a LONG time for those bumps and bruises to go away entirely.

Best of luck to you.

Nancy (son Ben,15,CD dx 3/06;  Remicade, Sulfasalazine)

Posted 8/27/2009 2:58 PM (GMT 0)
Yes, it took a very LONG time for mine to go away too...I really dont think the dermatologist did anything, as long as he is on Prednisone, it just takes a while to completely heal...

Kelly
Posted 8/27/2009 3:24 PM (GMT 0)
I never went to a derm...you need to get your crohn's under control...for me that meant pred. Once I started that, they started going away....not fun, those bumps are so painful!
Posted 8/27/2009 5:18 PM (GMT 0)
Thanks. I have been on Prednisone 3 times since Feb and my Dr doesn't want to keep me on it so he trying to think of other options. I guess without the Pred, I will just have to suffer through it while we wait for this junk to get under control.
Posted 8/27/2009 10:42 PM (GMT 0)
What mg of pred were you on? I was started on 60mg.
Posted 8/28/2009 1:35 AM (GMT 0)
Ask for SSKI (super saturated potassium iodide) - dosage is 0.3ml three times daily - mixed in about 6 ounces of juice or water.  It's taste is HORRIBLE - but it WORKS!

I was finally diagnosied by the dermotologist after 2 trips to the ER, not being able to walk for weeks because of the swelling, etc.

I took the Potassium (which had MUCH less side effects compared to the prednisone), for about 6 weeks the first time, and felt great after about a week and a half - the bumps and bruises took a while to dissapear, but I could walk again!  I've had a few flares since then, and it just takes about a week to reduce the swelling (none as bad as the first flare).

So - point is - ASK FOR SSKI - it's awesome!!

Posted 8/28/2009 4:49 AM (GMT 0)
Just curious - who suggested the SSKI? I haven't heard it used for this particular problem before, but I know it has a lot of different applications.
Posted 8/28/2009 5:10 AM (GMT 0)
Are you allergic to shellfish,,seafood? and have you had any recently which might have contributed.
Posted 8/28/2009 12:47 PM (GMT 0)
I had to deal with it before and I learned a lot. Where the bumps are the hair will grown more, something about the hormones. Also, the bumps tend to not come back in exactly the same place. I ran out of spots on my legs and was starting on my arms before I got mine to stop. There is nothing that will stop it except what someone else said you have to get your flare under control. The bumps are a result of an infection in your body, once the infection is gone or under control the bumps will go.

But to find relief I found a pound of sea salt to a tub as hot as I could stand really helped with the pain and itching. I did those about twice a day for as long as I could. No I have never found epson salt to be as effective as sea salt. If you get the food grade and fine grind it will disolve very nicely.

Best of luck and my you find some relief.
Posted 8/28/2009 2:38 PM (GMT 0)
My Pred tapers started at 60mg and then decreased by 10mg every 6 days til I was off it. I have no food allergies that could have contributed to it. I will ask about the SSKI. It can't hurt!
Posted 8/28/2009 3:14 PM (GMT 0)
Wow, you've been through an awful lot the past 6-months haven't you?  Fortunately, I haven't had to deal with your latest symptom - yet.  Since it's been 15 years, maybe I won't.  Good luck with finding the cure ASAP.  :)

Posted 8/29/2009 1:03 AM (GMT 0)
I had them constantly before I had my bowel resection.  The GI was convinced that when I went into 'surgical remission', that the EN would go away and she was right.  Unfortunatley for me, as soon as the Crohn's came back, so did the stupid EN. Prednisone did help, but as soon as I would taper off, they came back.  I saw a derm about them and he recommended the SSKI, however i'm allergic to shellfish so it turned out to not be an option for me.  I feel for you, they are very painful and leave bruises on your legs that take a very long time to go away.
Posted 8/29/2009 1:13 AM (GMT 0)
I've had them twice the first time was the worst. My gi increased my pred and gave me two remicade treatments which seemed to get things under control.It takes the bumps along time to clear up all the way. I wish you well.
Kay
Posted 8/29/2009 1:50 AM (GMT 0)
Keeper - The derm recommended the SSKI to me. Like I said, it's been a lifesaver!
Hope it works for others.
Posted 8/29/2009 2:06 AM (GMT 0)
Maybe you need to be at 60 mg longer.  I was on it for a couple of months before we started a taper....
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