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Me Again - Sorry - About My Daughter

macocha

By macocha
in Dermatitis Herpetiformis

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macocha Contributor
macocha
Posted

I posted a bit ago and need some more follow up. I was looking at some of the photos and daughter's don't look exactly like. Her rash though is getting worse and no meds are working :( She has it on her eyelids, inner elbows/arm, and neck. The photos are poor quality because of the camera phone, but you get the gist.

On the eyelids - on the left side you can see a small bit in the crease, but tonight it has spread to be even redder (inflamed) and goes beyond the eyelid to the side of her face. (sigh) on the right it is in the upper eyelid and somewhat the crease. These areas burn a great deal and she is suffering :(

On her neck, they are 1 to 2 inch patches. Photos don't catch it all. those don't bother her as much, but they aren't as inflamed.

The ones on her arms (only including one side) are heck-a inflamed. they are horrid and hurt her a great deal too. the photo doesn't show how much it is inflamed, but it is...badly.

Do these even look like any cases you have seen? She doesn't get into the derm for a few weeks, so I am struggling with what to do for her to ease the pain.

leftarm.webp?t=1292571222

leftneck.webp?t=1292571222

eyes.webp?t=1292571222

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ravenwoodglass Mentor
ravenwoodglass
Posted

The lesions on her arm look much like the lesions I had as a child, but mine covered my entire legs and arms and at times my face.

After you see the derm if you are done with testing do try her on the diet.

Nothing topical they ever gave me helped either except for once a year when they would give me prednisone. They wouldn't give it to me more than once a year because of the side effects and of course the lesions would come back after a month or so. I was told as a child that I had 'poison ivy' in my blood stream to explain why I had the lesions all year.

Jestgar Rising Star
Jestgar
Posted

Can you remind us what you think it is and what meds she's tried?

macocha Contributor
macocha
Posted
  • Author

She has tried:

Elidel - 1% cream

mupirocin - 2%

Hydrocortisone 2.5%

and one other - an ointment her allergist gave her

What do I think it is. I am leaning towards DH. She has fructose malabsorption already. Her brother has celiac. I want to know for sure because if it is this and that makes the FM worse than what it is. This has never fully gone away like sometimes exzema does in diff weather. It has always been a problem.

ravenwoodglass Mentor
ravenwoodglass
Posted

I would give her a trial of the diet after testing is done. You never know the FM may be a result of the celiac impact and it might resolve after she has been gluten free for a bit.

tarnalberry Community Regular
tarnalberry
Posted

Dose anything else go on her skin? Soap (she could try avoiding it)? Shampoo (try baking soda & vinegar, perhaps)? Lotion (try olive oil?)? Detergent from laundry? Is there any other doctor you can get to sooner?

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