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Ulcerative Colitis
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Posted 12/3/2007 8:27 PM (GMT 0)

Hello,

Has anyone experienced a facial rash due to UC? Here is my story...2 1/2 years ago I started with a little red spot under my eye. It was tender & painful. It spread under the other eye. I went to the dermatologist & he prescribed a steroid cream. It didn't work. I went back to him & he prescribed Protopic. That didn't work either. I neglected to tell him I have UC. I know...DUH!!! All of my doctors should know. (I know this now) I'm in remission & have been for some time. So, none of the topical creams have worked. The rash has gotten very severe & spread around my nose, above my mouth & all over my chin. It looks like red bumps & just red all over. For some reason, it stays in these areas. It has not spread any further but it has gotten MUCH worse.

It got so bad, that I finally went to my general doctor & told her what the deal was. She agreed that it was probably caused by the UC & told me to visit my GI doctor. I have an appt at the end of December...but I'm still in remission. The rash was so bad that she wrote me out of work for a week! She put me on Prednisone for 9 days. It helped keep it at bay, but as soon as I went off of it, it came back. 2 months later, here I am, still on the prednisone & feeling absolutely miserable from it. I have to get off of it, but everytime I wean down the rash comes back full force within a day or so & I can't be seen like this...plus it hurts.

Within 2 months, the prdenisone has taken me from 125 lbs to 140 lbs. It has given me facial hair, a huge tummy & a generally disporpotioned body. It's awful! I guess my question is, has anyone else had a facial rash that won't go away? If so, what was used to treat it besides steroids? I am so sad because before I just had a red face & now I'm fat & have a red face. It's destroying my self-esteem & quality of life. The saddest part, my UC is in check. Can you still have skin manifestations even when you are in remission?

Any help is much appreciated. I have no where else to turn. By the way...I hate Prednisone. :)

HMD

Posted 12/3/2007 9:05 PM (GMT 0)
Hi..welcome to the forum. Are you on any UC meds? Is your UC throughout your colon or limited?

I think your doc should be doing some blood testing for autoimmune, liver enzyme tests..etc.

What other supplements are you taking?

I've never been on pred...are you still an it for the facial rash?

Have you been checked for allergies? Maybe an allergist is your next stop.

Does this sound like it could be what you have?

http://www.medicinenet.com/script/main/art.asp?articlekey=364&pf=3&page=1

quincy

Posted 12/3/2007 9:44 PM (GMT 0)
Going off prednisone has caused a rash for me. Something about steroid withdrawal. Usually dermatologists see it after someone has used cortisone cream topically for a while. When they stop, the rash (red bumps) develops.

I got mine under control with MetroGel and some other cream, um, Elidel. But it was just little bumps all around my mouth and chin. It took about 3 months. But mine wasn't as bad as yours. My doctor said mine was called "perioral dermatitis." Apparently it can get bad and there's no known cure or understanding of what causes it. I wonder if that's what you have, although the eye symptoms sounds like it's something different.

I had just gotten out of a flare when my symptoms started. So my colitis was better but my face was not.

I think you need to see the best dermatologist you can find. Is there a big research hospital anywhere near you? The dermatologist should definitely look at it as possibly related to the UC and not just a skin condition.

Good luck. Even though mine was a lot less bad, I remember how awful it was not to want to go outside and not to know when it was going to get better.
Posted 12/4/2007 1:45 AM (GMT 0)

Hi Julee,

I researched online "perioral dermatitis" & I think that is what I have. It looks exactly like what is affecting my chin, under my eyes & around my nose. After researching, it is common for it to affect the tender skin under the eyes. I am calling my dermatologist tomorrow to make an appointment. I'm so crazy, that I'm going to print out pictures & bring them with me. Each time I go, my condition isn't nearly as bad as it had been & he can't get a good idea of what I have. Did your doctor say it could be from the UC? I only found one website that said GI issues could result in POD. (from malabsorption) Thank you so much for your information. I'm glad I found this website. :)

Here are links to what looks exactly like what I have:

nose/chin: http://content.answers.com/main/content/wp/en/thumb/a/a7/250px-Pod2.jpg

eyes: http://www.visualdxhealth.com/images/dx/webAdult/perioralDermatitis_5304_lg.jpg

Quincy,

The link you supplied is not working. To answer some of your questions:

I am not currently on any UC meds. My UC is fairly limited. My last colonoscopy showed very minimal progression. I have a stash of Rowasa enemas, in case I have a flare-up. They tend to work well for me. Each time I see my GI doctor, he runs blood work. When I went to see my regular doc for the rash, she ran blood work too. She was especially interested in my iron & B12...they both came back normal. As far as supplements, I usually just take a multi-vitamin & sometimes an iron pill...just to make sure my iron levels stay normal.

I'm on the prednisone strictly for my facial rash. WORST mistake I ever made was agreeing to take it. I thought it would clear it up in 9 days...boy was I wrong. Prednisone is prescribed for UC, so at least while I'm on it, it's hopefully helping even more with my UC. Can you repost the link for the rash? I'm always looking to further my knowledge about my UC.

Thanks again!

Posted 12/4/2007 5:29 AM (GMT 0)
Hi. Wow, you think it's the same thing? I'd be happy if your mystery is solved!

Here's what I know:

The perioral dermatitis wasn't CAUSED by UC. Some people get it out of the blue. Others get it when they stop using cortisone (steroid) creams on their faces. (I would assume for a prior condition.) My brilliant dermatologist figured that if people can get it from stopping steroid creams, then my case was probably from stopping steroid pills. I'd just gone off Prednisone the month the rash showed up.

My dermatologist told me that it's usually treated with yet more steroid cream but that's kind of catch-22. Every time you stop, it gets worse.
Ask your doc about MetroGel or MetroLotion. Also Elidel helped the parts that were getting dry and flakey. (yuck, I know!)

Mine felt "prickly"... it hurt in a strange way. The medicated lotion really helped.

And I also found that as soon as I got to the doctor it would look better!

NOW-- this is important. Don't believe all the stuff online that says it never goes away. Mine went away a year ago and hasn't been back since. I got myself all crazy about having it for the rest of my life. Big waste of time worrying about it.

Good luck with the dermatologist! :)
Posted 12/4/2007 5:19 PM (GMT 0)

I'm so glad I looked in on the forum this morning!  I've been experiencing this same type of red rash around my nose, mouth, and chin.  I've also used the steriod cream and a couple of other topical creams to try to clear it up...nothing has been of much benefit.  The rash will start clearing up a little and then come back...usually spreading even more.  It's been very frustrating.  It's bad enough that we all suffer on the inside...now I have this right out there for everyone to see!

I was on prednisone this past summer and fall during a flare.  After tapering off, I noticed the rash.  At first it was just a small area at the corner of my mouth.  Then it appeared on the sides of my nose and under my lower lip.  I have never had this before and have been on prednisone several times in the past.  I had wondered all along if it could be related to my UC. 

At least now I have a name (perioral dermatitis) to research and ask my doctor about.  Once again, having all of you to share experiences with has paid off.  Thank you.

Posted 12/4/2007 7:44 PM (GMT 0)
I have Rosacea and when I was on prednisone it actually cleared the Rosacea right up. So that was a weird reaction because I know steriods can really break out your face.

Then, when I came off prednisone, wham! the rosacea got real bad again.
Posted 1/22/2012 10:19 PM (GMT 0)
I've got a different rash. I've got UC and my tests for Lupus and other AID come up negative.
It started about 10 years ago, before my UC diagnosis and after first child. It is a red discoloration, with some roughness to it. It doesn't itch or flake.
It is on the lower half of the side of my face, started on one side and is on both. It also extends down onto my neck.
It almost "matches" on each side. It is NOT on the top of my cheeks or my nose or forehead.
It also gets red bumps occasionally that itch but if touched, they kinda hurt, so I keep my hands off them.
Nobody knows what it is or what caused it. Don't want to use steroids!!
anyone else?
Mary A.
Posted 1/23/2012 1:37 AM (GMT 0)
hmd, i usually ALWAYS get rashes when i am on medications. the worst medications that i got rashes from were lialda and prednisone. the rash goes everywhere though- my face, my hands, arms, feet, ankles. just totally itchy. my doctors said "oh it's probably from your detergent" but i'm not dumb enough to go along with that. you basically have to get the drug out of your system for the rash to go away.
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