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Suspect hormone allergy induced recurrent dermatitis; cyclical flare up 2-3 days prior prior to menstruation; could this be APD?-reaction to progesterone in luteal phase?

By June 18, 2011 - 5:54am
 
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I think I may have Autoimmune Progesterone-induced Dermatitis, however it seems from posts online that many women experience trouble getting this conditioned tested and diagnosed, mainly because medical professionals do not know about it. How can I bring it to the attention of my GP, or would I be best to get a referral to a dermatologist? What should I say if the dermatologist has no experience with it? How can I best make them take me seriously and not just class it as a)atopic dermatitis b)irritant contact dermatitis etc. What are the possible treatments? As an infant and child I had quite severe atopic dermatitis or eczema of the knees and elbows which became more manageable as I grew up; topical steroids, emollients, baths, gloves to physically restrain me from scratching, allegen scratch tests, substance eliminating diets and for sometime between grades 3-5 morning visits before school for uv light therapy. While never completely gone from my life, it seemed to go into a 'remission', until I was a teenager and contracted hand dermatitis with intermittent flare-ups of old 'trouble' spots. For years I have struggled with embarrassment, anxiety and at some points depression. I noticed a connection between the 'flare' times and my period. I mentioned this to my GP. He didn't consider it to be relevant. Recently I came across a condition known as Autoimmune Progesterone Dermatitis, a milder form of Autoimmune Progesterone Anaphalaxis as I google searched for hormone-induced eczema. But sufferers say it is hard to find a doctor who will believe such a condition exists, or even how to go about testing or treating it. Women can leave a doctors office bewildered, with a referral that may or may not lead to someone else who is willing to accept and treat the condition. How can I get a scratch test for this? Why isn't is more advertised? Why isn't it more well known and researched? I don't think it is as rare as GPs may think. Of the dermatitis cases out there, how many with this chronic condition are women, and for how many of these women can better treatment be provided by identifying hormones as a trigger? Similar to if you identify a food allergen as a trigger. By simply connecting the monthly cycle with the reason for painful burning lips, cracked hands etc., a much better quality of care and life can be had. How do I advocate for it? How do I increase awareness and get information to help myself, and for others out there going through the cycle of unsightly, painful cracking skin again and again month after month for years on end. Help us find a way to better detect and manage it. The resources are there. The research and willingness is not.

Thankyou

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EmpowHER Guest
Anonymous

This sounds like me. The rash I get before my period is just like the yeast rash I got when pregnant. What worked for me... Even quicker then medicated creams... With no adverse effects, and no chemical... Organic coconut oil. Works wonders for me. Just rub it on twice a day! Eapecially at the onset of the rash!

April 5, 2016 - 6:23pm
EmpowHER Guest
Anonymous

So my story is this : Born with severe asthma, been on again/off again, mostly on, prednisone my whole life, fast forward through a miserable, abusive, to say the least stressful marriage and divorce, now with a wonderful man and happy marriage, all to eventually be sent to an Endocrinologist because of multiple miscarriages, told by him I had Adrenal Fatigue and was diabetic, to go off all sugar, synthetic and natural, no fruit, no starch, nothing that could turn in to sugar in the body, Great, 3 gorgeous, healthy girls later, blended family, ex's (mine and his) , life in general=stress . Ok, weight gain, hair loss, can't sleep, but oh so tired, dry skin,missed periods (no not pregers, my mans fixed) freezing all the time, yet weird hot flashes, go figure, see my GP, She brushes it off, 2 months later symptoms the same, maybe worse, start exercising, go back to endo's diet, anything green or protein, no change after 9 weeks, went off coffee, which was my only vice and still, nothing but feeling crappy! Go back to GP, beg for answer, she says BIRTH CONTROL, really ?, ok, I'm desperate, result: oh wow, gain 10 more pounds, periods are now never ending, lasting 17 days, her response: you need to regulate and have another cyle of BC, fast forward she finally orders labs, to find, I have low thyroid function, here comes the Rx again, Synthroid, within 2 hours of taking I break out in itchy, itchy rash on my hip, weird, call doctor, "I don't believe its any correlation" " It's probably fungal, get a jock itch cream" ok, no improvement! Rx for another cream after I notify her 5 times in a week, because I'm going crazy !, I itch so bad, in awful, unmentionable places, that I have bled, scratching in my sleep, I have bruised my legs, scratching, I went off Rx and had relief, not complete, but 50% better, now I break out every month just before my period and it lasts for a few days after it ends, I also develope a bad metal taste in my mouth, so I go back to my Doctor and tell her this, she "offers me Prozac and tells me that I seem depressed and have I thought of Counseling?" " That I am always complaining" WTF! I'm sorry, we're not dating, I'm not coming to take you to lunch, there's something wrong with my health! My body, sorry if you chose a profession were people really only come to see you because there's something wrong! It has now been 8 months since original "complaint" I demanded an answer, I went in when my Rash was in fullmode, she was utterly amazed at how bad it was, she immediately did a 3 mil "punch" biopsy, called me 4 days later and told me I have a very RARE condition, Estrogen Dominance Syndrome, "very easy to treat wish more birth control". Forget that! I honestly believe that somewhere she gave a Rx that screwed up hormones so bad, I now have this. I am doing all the research I can to educate my self, in this I have found that I suffer from 90-95% of the symptoms from this condition and My Doctor couldn't figure out what it was, I am a classic walking case of this! I feel for all the woman who have shared and felt my pain.

December 5, 2015 - 4:18am

Oh my goodness. this is so me!!! I have not had a cycle in over 4 years. I have this horrible cyclic rash that appears in the genital area, and on the left side of one leg, and when i say horrible, I mean I am miserable for about 7-10 days. Lately I have also noticed that I cough, and am short of breath more during this time period. And in the last few days I have been experiencing some numbness in my lips. Any advice on how to approach this with my dr? I think my GP may listen and help, I just have no idea how to present anything to her!!!

June 5, 2015 - 12:14pm
EmpowHER Guest
Anonymous

many of you sound like you are suffering from estrogen induced auto immune disease's. Auto immune disease's occur in women 8 times more than in men oddly enough. An endocrinologist should test all your hormones to make sure everything is in a correct balance. DHEA's, progesterone, estrogen, cortisol. I have learned many things from my own auto immune issues and learned stress can even increase the severity or instances due to an increase of cortisol, estrogen and progesterone. It is important to try and detoxify your body as well to eliminate all the crap your body has accumulated that it could have become allergic to or sensitive to as they build up in your system and your hormones change. Avoid air fresheners, cosmetics and lotions and soaps with perfume or fragrance listed as an ingredient. some chemicals mimic estrogen and cause estrogen like problems but don't show up as actual estrogen so it interferes with your bodies natural hormone balance. Once your body has been thrown out of balance, it is harder for your body to calm back down as it is now more prone to a the same reactions. things often reoccur in your body after it becomes sensitive to something. kind of like every time I get poison oak it is worse than the last time. my body is now highly reactive to it. the more exposure to something you are allergic to or are effected by increases the more time it happens and the more exposure you have. systemic xenoestrogens cause many issues like hormone related autoimmune disorders and allergies.

February 14, 2012 - 6:18pm

Hi All:
I am newly diagnosed with APD and understand your concerns. I too had great difficulty finding one of my personal Physicians who had even heard of it. Thankfully, in weeding out Doctor's who did not "listen" to me as a patient, when I stumbled on APD and presented it as a possibility, they did investigate. While I can't recommend someone personally I had my allergist/immunologist do the testing. I went to his office armed with case studies and similarities that matched some of my symptoms. I would recommend going onto NCBI - National Library of Medicine and Institute of Health. Just google Autoimmune Progesterone Dermatitis and NCBI. The testing is relatively easy and requires an interdermal injection of progesterone. I too agree that this is a grossly under diagnosed. It appears that it can present in a variety of different ways. My symptoms are not like any that I have read about in any of the case studies. My symptoms seem to be more or less contained to the mucosa tissue in my body. I get hives orally, vaginally and swelling in my sinus cavity. I am in the throws of finding someone to treat me and to also understand how this has affected other processes in my body. I was also diagnosed with insulin resistance a few years back and feel it is directly related to my hormone fluctuations as well. I wish you all luck.

July 19, 2011 - 6:35pm
EmpowHER Guest
Anonymous (reply to gaines67)

The insulin is directly related as it controls and effects your hormones. I can trace all my troubles back to having been given massive amounts of prednisone (for severe asthma) most of my life, which led to adrenal fatigue and ultimately type 2 diabetes, and now this! good luck.

December 5, 2015 - 4:22am
EmpowHER Guest
Anonymous

I also believe I have a hormone allergy. I've been getting huge, painful hives for 6 months now and all my blood tests have come out negative for lupus and other autoimmune diseases. I've had eczema which started only a few years ago and now I also have psoriasis. A week before I get my period I flare up so bad I can't function. One instance my eye was swollen, another my lips were swollen.. I believe I may even have anaphylaxis. I live in NY and want to see a doctor who will take me seriously and not just prescribe me antihistamines and tell me to take allergy shots for dust and mites. Can anyone recommend any doctors??

July 6, 2011 - 9:29pm
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