Possible autoimmune progesterone dermatitis

Good morning, new to this forum. I have been having some medical issues which have brought me to doing a lot of personal research on the internet. I have seen several DR's and specialist over the past year. I believe I may have autoimmune progesterone dermatitis but have yet to have this confirmed. New allergist thinks lupus, but I'm not convinced. I am looking forward to reading your posts.

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  • Hi What are your symptoms? rashes etc?can you post some pics and describe your overall symptoms

  • Symptoms: hives, fatigue, pain. These are the main symptoms I have smaller one's, headache, brain fog..... I do have hypothyroidism and was just checked for ana which came back positive 1:320 speckled. I am trying to figure out how to put pictures on here.

  • Thanks that is interesting I have same symptoms and I am taking a natural progesterone cream and wondered if I was doing more harm than good with it .My rashes can be pretty spectacular at times. ;)

  • Test came back positive

  • Sorry to hear that :(

  • I have just been diagnosed with this illness. The minute I get my period my face and lips swell, I get bad hives all over and excruciating nerve pain. It leaves me in an ice cold bath for a week to numb my body otherwise the pain and skin burning is unbearable. Ive tried all possible nerve pain relief but nothing helps, my endocrinologist is about to enduce menopause for me, at 21 years old.. I'm about to lose my job due to taking time off for this sickness which randomly developed 5 months ago. I'm wondering how you manage your case or what treatments you found helpful.. hoping to find someone who I can relate to as this seems to be really rare!

  • I'm so sorry that you are going through this. I have taken lupron shot. This puts you into menopause. I am much older so I opted to remove overies. There is a Facebook page with women who deal with this. It was very helpful and nice to find someone who relates. Some of the younger ladies have tried the desensitized route. Look up autoimmune progesterone dermatitis in Facebook. Feel free to message me if you have any questions.

  • Hi Brittanym,

    I have SLE and I'm at the natural menopausal age now. I believe progesterone has an immuno suppressive effect on the body. It helps stop the immune system of pregnant women from attacking the unborn child. SLE women have to be carefull of the projesterone drop after pregnancy - but I've not heard of it causing such serious problems when you go without it during your period.

    You could ask your endocrinoligst about this ?

    Speaking for myself - when I first flared - I always vomited and became unwell near my period.

    This was fixed with proper immune - suppression drugs. I think this might be something that needs to be thought about for you right now. Definitely listen to your endocrinologist as they are always a help for us when we flare - but also make sure you're getting proper and adequate treatment for your Lupus.

    When I went into early menopause at 33. I did take full on hormone replacement for many years - only to find out from a very unhappy Lupus specialist that this wasn't a good idea.

    I'm sorry you have to go into menopause - but it will help you feel better in the long run. And it might not have to be permanent.

    With proper treatment your current symptoms will reduce over time.

    X

  • I live in the USA. Sounds like you should ask your doctor if suppressing your immune system would stop all of this. I cant take prednisone but have done well on mycophenylate. Some people get side effects from it but apart from occasional diarhea I have been lucky. Also most lupus patients take hydroxychloroquine which helps a lot. For me, finding a rheumatologist or immunity doctor with experience in lupus has been everything. Good luck to you. It is scary when you feel your body is not your friend.

    Leigh Rice, loving the UK.

  • Oh I deactivated my Facebook about a year ago so I would never have known that! I'll reactivate it and check that page now, thank you so much. Nice to know I'm not as alone as I thought and I hope you're managing yours x

  • Freckle1000,

    Thanks for your reply, I will definitely look into that.

    I have tried prednisone at a high dosage to suppress my immune system but had no luck.

    I'm seeing my endocrinologist next Wednesday and will update the post on my page with the options she gives me to try so I can potentially hear from women who have tried those remedies and find out what my best option. Thank you again for your interest and care x

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