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Mid-dermal elastolysis (MDE): What treatment did you get?
Hi! Today I got diagnosed with mid-dermal elastylosis. I am 31 years old and feel really scared of what I will look like in a few years.. My chest is already wrinkled and my stomach is full with bumpy rashes. It’s also spreading on my back. I went to the doctor today expecting to get treatment to get rid of the rashes, but instead I found out I have a disease with no good treatment. Meaning I will probably always look like this, and it will get worse.. I am really torn and sad. I will start treatment in a few days with Isotretionin (a medicine primarily used for acne) to try to slow it down.
Does anyone have experience with this disease? What treatment did you get?
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@gabo317, I moved your post to this existing discussion on MDE:
- Mid-dermal elastolysis (MDE): What treatment did you get?https://connect.mayoclinic.org/discussion/mid-dermal-elastylosis/
I did this so you can read previous posts and connect with members like @millie10 @ocean85 @fiercebully9 and @geryzarandy.
@gabo317, is this a recent diagnosis for you? Have you been to see a dermatologist?
For full transparency: The condition is with my wife, and I am really involved, trying to help her find good information that will help with whatever she has. So far, she had 3 biopsies, and all had different results. First was sclerederma, then the second biopsy was useless, totally off. The third biopsy shows no sclerederma, but indicates possible MDE or PXE. For the PXE, the next step is to do a genetic test. I did an AI search posting all of the biopsies, and most came back as MDE She has seen several dermatologists, and they have no clue. We still don't know for sure what it is. She has the condition on the midsection of her inner arms (elbows) and the neck. It is like chicken skin with lots of little small bumps. She is trying different moisturizers and even castor oil (not taking it - just rubbing it where the bumps are). She claims it helped a little. Stress seems to trigger it to show more. Bottom line—we still don't know what it is!!! same as the dermatologist. Sorry for the long explanation.