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Arleta
04-25-2019, 09:40 AM
Does anyone else have the rare skin condition called DSAP? I've had it for a long time...probably 30 years....way before Wegener's. It has gotten worse since Wegener's, though. I was reading an article about it recently that seemed to indicate that it can come along with auto-immune diseases. It is affected by being in the sun---it makes it worse, so taking Imuran doesn’t help.

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Alysia
04-25-2019, 02:12 PM
Hi Arleta,

I've never heard about it. Just googled it now. They write that it is genetic. My sister has another rare skin condition which is genetic. She was born with it. It is called Ichtiyosis. She also feels itching and irritating. I guess that rare things somehow comes together.

How do you treat it ?

My sister's condition looks different. Over the years she tried many creams, oils and ointments. Her skin is better then it used to be but she works hard to treat it daily.

gilders
04-25-2019, 07:19 PM
Hi Arleta,

I have not heard of DSAP on this forum before, so guess it's not very common with Wegener's patients.

I also googled some info. I'm sure after living with it for many years, there's nothing I've found out in a quick search that you don't already know. But there is one scenario that I hope you use extra care. As I'm sure you know, the brown patches are caused by precancerous cells, but fortunately it is considered safe and unlikely they will actually become cancerous. I have recently been advised about cancer (especially skin cancer) after my kidney transplant. Wheras the strong antirejection/immunosuppressants are described as increasing the risk of cancer, it is not the meds that actually cause the cancer. Throughout your body there can be many cells that potentially can become cancerous. Your own immune system prevents these cells from becoming cancrous.
But if you are on medication to stop your immune system working, then these potentially harmless precancerous cells can become cancrous.

Therefore my advice to you would be not to worry about DSAP causing skin cancer when you're in remission and only lightly immunosuppressed, but if you have a flare and you need to increase any meds that effect your immune system, make sure you cover up, avoid sun and use strong sun screen.

Arleta
04-26-2019, 02:07 AM
There's not much you can do. I see a dermatologist twice a year. She checks for precancerous spots and recommends using a moisturizer. I've tried a couple prescription things, but nothing really helps. It makes me wonder if there is some kind of genetic predisposition for Wegener's. My brother has no issues, though.

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drz
04-26-2019, 01:08 PM
I just thought it was a common side effect of GPA like several other symptoms. I see dermatolgists who freeze some spots although I don't know or see the difference between those they deem pre-cancerous and those they don't. But they often examine them with a magnifying glass to make their decision. I had one spot biopsied a week ago to find out if it might be a new type of vasculitis but it looked the same to me as the red spots I often see on my skin which seem to come and then sort of fade away.