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  • Autoimmune Progesterone Dermatitis

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    Old 02-26-2016, 06:53 AM   #1
    CameraGirl1112
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    Autoimmune Progesterone Dermatitis

    Does anyone have this? It happens during menstruation- your body is "allergic" to progesterone. I get VERY BAD mouth ulcers, and VERY BAD eczema "hot spots" all over my face right before my menstruation begins.

    If anyone has this, or has heard of it, please help! I need to know what to do, or where to begin with this!
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    Old 03-02-2016, 03:29 AM   #2
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    Re: Autoimmune Progesterone Dermatitis

    Hi. Since this is new to me, I read up & learned that it's considered a rare condition. Have you looked for resources for the "rare diseases"? I think there's at least one "clearinghouse" organization---maybe NIH, I can't remember for sure (sorry). Really sorry this is happening. Hey, we all want to be considered unique & somehow special, but NOT this way! Let us know how you're doing, and good luck.

     
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    Old 03-02-2016, 05:25 AM   #3
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    Re: Autoimmune Progesterone Dermatitis

    I appreciate your reply! Yeah, I've done some research myself and saw that it's considered a rare condition. It's starting to get better, actually, now that it's toward the end of the "cycle". However, this time my eczema turned into full on psoriasis. Yay! (Insert sarcasm here). Anyway, I should be hearing back from the doctor sometime this week about where they're sending me. As I continue my research, I realize how little doctors actually know about this; although, it's not as rare as it might seem.
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    Old 03-02-2016, 05:55 AM   #4
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    Re: Autoimmune Progesterone Dermatitis

    If I see or think of anything potentially useful, I'll certainly post it. And keep us posted about what steps come next, OK? I get the feeling you'll likely be the one to teach us about this. I hope you're referred to a large teaching hospital, as they tend to see rare conditions more often than local & regional hospitals do, just due to the law of large numbers. Good luck!

     
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    Old 03-02-2016, 06:58 AM   #5
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    Re: Autoimmune Progesterone Dermatitis

    I will keep this updated with the upcoming steps that are taken. I need to actually call the doctor and find out if they've found anyone yet, but, my mouth sores are so bad that it makes it painful to say more than a few words. Yikes.
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    Old 03-29-2016, 06:23 AM   #6
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    Re: Autoimmune Progesterone Dermatitis

    Well, my appointment with the allergist was on 3/15. They are trying to figure out where they can get the progesterone from to do a "scratch test". They said that they'll call when they have the progesterone in. I'll keep you updated.
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    Old 03-29-2016, 06:45 AM   #7
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    Re: Autoimmune Progesterone Dermatitis

    Hi. Was that full-blown skin reaction confirmed to be psoriasis? And do you also have the type of joint pain (etc.) so common in the inflammatory AI's? Just curious b/c when you wrote "psoriasis", I wondered about Psoriatic Arthritis. BTW, that, as luck would have it, is a "diagnosis of exclusion", I think---meaning it's also tricky & involved. I hope you achieve a breakthrough soon!

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    Old 03-29-2016, 08:33 AM   #8
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    Re: Autoimmune Progesterone Dermatitis

    Hello! I'm supposed to go back when I have my next flare up so that she can see the mouth sores and the spots on my face for herself. She's only seen one other patient with this, and she said that she had completely different symptoms. I do not have joint pain. The spots on my face start out EXTREMELY itchy, and the more that I itch them (or even touch them, for that matter), the redder, hotter, and bigger they get. But now, after a few days, the spots will turn scaly. They're yellow-ish, but scab-like, and very painful. Gross, but if I peel it off, it just comes back. I now have scars where they were the last time. It's embarrassing, actually, having these red marks on your face.
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    Old 05-18-2016, 11:25 AM   #9
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    Re: Autoimmune Progesterone Dermatitis

    Okay, so I had my progesterone allergy testing done, and according to my allergy doctor, it came back negative- I'm not allergic to progesterone. So. Back to square one. I don't know where to go from here.
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    Old 05-20-2016, 05:04 AM   #10
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    Re: Autoimmune Progesterone Dermatitis

    I'm sorry you haven't gotten answers. Have you seen a dermatologist? If it's a form of eczema (I'm wondering that because it starts out dry & itchy), maybe prevention involves extra attention to moisturizing and avoiding irritants (like perfumed products)? Or if it's more like a seborrheic dermatitis (because it eventually turns crusty), I think treatment for that might be ointments...?

    But I'd want to try something---anything!---to quell itchiness. I used to get tiny blister-like bumps on my hands which seemed to appear before periods. I remember getting up at 3 AM, running hot water on my hands (useless), and scratching until I bled, so I know how impossible it is to not scratch when your skin is that itchy. I think my derm prescribed cortisone ointment & the occasional shot, but I had to take care not to over-do the ointment because cortisone can dry your skin.

    I've read that "menstrual acne" is relatively common and that there's a variety of treatments for it, yet what you describe seems different than what I've read about it, or seen in pictures. (But I'm so NOT a doctor.)

    Re mouth, is it your gums, or elsewhere? (My gums used to puff up at a particular point in my menstrual cycle.) Has your dentist weighed in?

    I hope others chip in. Looking forward to updates.

     
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    autoimmune, dermatitis, menstrual cycle, progesterone, women



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