Autoimmune Progesterone Dermatitis

Hello @emily793, welcome to Connect. I can imagine how frustrating it must be trying to find a treatment that works. I don't have any experience with autoimmune progesterone dermatitis but found an article published Dec 2018 that may be related.

Progesterone hypersensitivity: Case report with favorable evolution
-- https://www.spandidos-publications.com/etm/17/2/1125

@zena, @smbryce1, @jimc522, @leilanis and @mscott1029 have discussed Xolair as a treatment in a post in other discussions and may be able to provide some information for you.

Have you and your doctor decided to try Xolair injections?

@emily793, I add my welcome to Connect. I noticed that you tried to include a link in your message. You will be able to add URLs in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post was not spam. Please allow me to post it for you.

About Autoimmune progesterone dermatitis (APD) from NIH https://rarediseases.info.nih.gov/diseases/9139/autoimmune-progesterone-dermatitis

Thanks Colleen. My link was similar to what you posted but thank you!

Thanks @johnbishop Yes we have done three months of Xolair but it has yet to be effective.

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?

Hello @emily793, It's been awhile since you've last posted. How are you doing with your Autoimmune Progesterone Dermatitis? Are you still on Xolair or have you found another treatment that helps you?

I did find an article using Google Scholar (https://scholar.google.com/) that talks about using Danazol as a treatment.

Case of autoimmune progesterone dermatitis presenting as necrotic migratory erythema successfully controlled by danazol
-- https://onlinelibrary.wiley.com/doi/abs/10.1111/1346-8138.15180

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

@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?

Does Mayo have pediatric specialists? My daughter is 2 and has severe eczema.. she doesn’t sleep well and scratches until she bleeds.