Autoimmune Progesterone Dermatitis

Posted by emily793 @emily793, Mar 10, 2019

Hello everyone,

I was curious to know if anyone had experience with autoimmune progesterone dermatitis? I have had severe allergic reactions including anaphylaxis and skin rashes. After positive progesterone skin testing with an allergist and failed attempts to tolerate even tiny doses of progesterone, I was diagnosed with APD (allergic reactions to my own progesterone). My immunologist and I have not had success with desensitization and we are hoping Xolair injections will help. I also have Lupus which has been aggravated by these frequent allergic episodes.

Thank you!

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?

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@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

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@colleenyoung

@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

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

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@johnbishop

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?

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

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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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@emily793

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

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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

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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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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.

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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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@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)

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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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@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?

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

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@lculbert

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

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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.

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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.

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@ethanmcconkey

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.

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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

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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?

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