Autoimmune Progesterone Dermatitis

Hello @lculbert, Welcome to Connect. I know it must be heart breaking for you that your daughter has severe eczema. Mayo Clinic does have pediatric specialists. 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.

Has her pediatrician suggested or offered any treatments to help with itching?

I found this page that may be helpful - Mayo Clinic Minute: Understanding childhood eczema
-- https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-understanding-childhood-eczema/

@ethanmcconkey may be able to share some suggestions with you from his experience.

Hi @lculbert I totally understand the feeling of having a child that struggles with eczema. My oldest kiddo is two as well and he struggled mightily with eczema on his face, hands, and some other parts of his body. What we found that was incredibly helpful was using vaniply lotion over his entire body before bed, and then put it on his face and hands in the morning. Then we also would spot treat the eczema spots with hydrocortizone cream.

We found the biggest exacerbation of the eczema was related to allergies, so we give him zyrtec every morning and that helps immensely as well.

Back to you @lculbert, what all have you done for your daughter? I hope what my wife and I have done for our son may be helpful.

We have used vaniply and the doctor has ordered prescription strength Benadryl and liquid steroids. But it only stays manageable with the drugs. We have been to allergists and dermatologists. Many allergy tests and results are different between the skin test and the blood test

Hi @lculbert, that must be so confusing to have different results between a skin test and blood test.

The only other thing I can offer is I have a family member who is a pediatric nurse and when we were working to treat our son’s eczema they said that kids with severe eczema are admitted on their floor all the time and are treated with wet wraps soaked in a diluted vinegar solution. We tried that with our sons feet when they were at their worst and it seemed effective. Here are some other treatment options from Mayo Clinic’s page on dermatitis or eczema: https://www.mayoclinic.org/diseases-conditions/dermatitis-eczema/diagnosis-treatment/drc-20352386

Back to you @lculbert, how has your daughter been since you last posted? Have you been able to find anywhere else you can bring your daughter for treatment?

@emily793
Can I ask where you were able to get a progesterone test done? I just had a dermatologist tell me today that this maybe what I have been dealing with for the past 7 years, but he said Oklahoma doesn't offer it and neither does Dallas. Since it's so rare, he mentioned this other pt had to go to Cincinnati to get answers. At this point, I'm willing to travel if I have to. Thank you for posting this, I'm glad you found out what you were dealing with. I hope I'm as lucky as you in the future!

@ame0810
Hi, for sure-I saw Dr Mariana Castells at Brigham and Womens Hospital in Boston. She is a well-known allergist/researcher who specializes in research and treatment of progesterone hypersensitivity. She told me that she and one other doctor in Cincinnati (may be the one your Dr. mentioned) are the only doctors who really specialize in progesterone hypersensitivity. She was able to see me and work with my allergist to do testing and try treatment protocols in my home state. (This was during the thick of Covid shutdowns so I'm not sure they could still do this now).
She is an extremely knowledgeable allergist and if your team is feeling like this is something you're dealing with, I would highly recommend having your doctor send a referral. I'm sorry you've been searching for answers so long-Best wishes!
https://physiciandirectory.brighamandwomens.org/details/1728/mariana-castells-allergy_and_immunology-boston-chestnut_hill-foxborough-jamaica_plain
Mariana C. Castells, MD, PhD
Director Drug Hypersensitivity and Desensitization Center
Director Mastocytosis Center
Professor, Harvard Medical School
Allergy and Immunology

Hi there!

I am struggling with the same thing and have had complete relief by taking OCP continuously for for the past 7 years. I’m looking into starting a family in the next few years and am searching for a specialist who can help me with this. Have you had any luck with this? The doctors in my area have been very discouraging and know very little about AIPD. Thank you!

Hi Emily, I also have autoimmune progesterone and lupus and have also had skin rashes and anaphylaxis. I just took my 1st dose of Zolair and am wondering if this has helped you as I am at a loss to figure this out and am scared to death. Any help, I would be grateful.

@ashmckie874 Welcome to Mayo Clinic Connect! I’m glad you found us. Diagnosing and treating autoimmune diseases can be such a long, frustrating problem. What kinds of doctor are you seeing? Did this doctor prescribe Zolair? Have you thought about going to a comprehensive medical center or university hospital? The doctors there usually have more knowledge than local doctors because they are also involved in research.
https://autoimmune.org/resource-center/finding-a-physician/ I’m sure the Autoimmune Association can help you.
Will you give them a call tomorrow. And, please, keep me informed about what you learned.

Hi all. I am just getting this diagnosis even though hives right before my period was the reason I started seeing an allergist/immunologist over a year ago. It has been a wild and not acceptable ride since then with lots of detours. Despite medical professionals believing it was something else, we are right back to where I started and I really need to find a doctor that knows this. I am in the Phoenix area. I have only found one in Tucson and she is not accepting new patients. Looking for any assistance. Not a single doctor has been able to perform the skin tests to confirm. I have been to a dermatologist at Mayo and they do not have anyone they can refer to here. Thanks in advance!