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Autoimmune Progesterone Dermatitis

Autoimmune Diseases | Last Active: Oct 3, 2023 | Replies (17)

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@anniem1650

I have autoimmune diseases in my family for generations. I have been experiencing strange skin conditions for 3-4 years now and no Dr. has been able to give me answers. I began to notice that it seems to coincide with my menstrual cycle. I read a study about AIPD and it sounds like it could be it, all of the dots connect. I would like to see someone that is an expert in this area. I've been to dermatologists, rheumatologists, family practitioners, Endocrinologists and I've been told all kinds of things, but nothing that makes sense or is concrete. Has anyone heard of any Doctor's that specialize in this disorder or study autoimmune skin conditions?

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Replies to "I have autoimmune diseases in my family for generations. I have been experiencing strange skin conditions..."

Hello @anniem1650, Welcome to Mayo Clinic Connect. I don't have AIPD but I am a Rochester Mayo Clinic patient and think that they are excellent at diagnosing hard to diagnose health conditions from my experiences.

Here are a few links that may give you more information:

Dermatitis care at Mayo Clinic -- Advanced diagnosis and treatment
-- https://www.mayoclinic.org/diseases-conditions/dermatitis-eczema/care-at-mayo-clinic/mac-20352390

Autoimmune progesterone dermatitis
-- https://rarediseases.info.nih.gov/diseases/9139/autoimmune-progesterone-dermatitis

Three Cases of Autoimmune Progesterone Dermatitis
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5500715/

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@anniem1650 Have you seen an allergist? It is possible to do skin testing with progesterone to help confirm diagnosis. After diagnosis, some patients have been able to control symptoms through use of OCPs.

"Definite treatment of AIPD is suppression of ovulation by inhibition of the secretion of endogenous progesterone during luteal phase. Combined oral contraceptive pills with low dose progesterone is first line of treatment for AIPD. Other effective agents includes GnRH analogues, which suppresses ovulation by suppressing the hypothalamic-pituitary axis."- http://www.anncaserep.com/full-text/accr-v2-id1452.php

Other suggestions I have been given are desensitization (attached article), antihistamines, Xolair, danazol, lupron, or surgery.
Best of luck

Shared files

Progesterone Hypersensitivity (Progesterone-Hypersensitivity.pdf)

@anniem1650 This site from @johnbishop would be a great place to start https://rarediseases.info.nih.gov/diseases/9139/autoimmune-progesterone-dermatitis. You might be able to find an organization in your area. You sound like you have been very proactive! Have you thought about seeing a gynecologist? He/she would be knowledgeable about hormones. Has anyone in your family had a similar rash?