Finally.........

I finally know what is wrong with me!  After 4+ years of mysterious and incredibly itchy hive-like outbreaks, I found a Doctor who was able to identify it.  I know that she has correctly identified it, but am going to have the Dermatologist do a patch test to confirm the diagnosis before starting any treatment.  I had several outbreaks of red, itchy, hive-like spots from my neck to my thighs.  The rash was extremely uncomfortable and had to be covered if I went out in public.  It was very unattractive.  The rash usually lasted 1 to 3 weeks.  I had several outbreaks in 2004-2005 and then several with my second pregnancy.  I had an outbreak the day after I took my pregnancy test, one in the middle of the pregnancy and then a really bad one during delivery.  When I felt the symptoms coming, I told my Doctor to schedule an induction to get the baby out, but she didn't believe my "rash" could be that bad.  As if delivery wasn't bad enough, I was itching, scratching and uncomfortable beyond belief.  This one affected my face too so that I looked like I was sunburned and puffy.  Thank goodness a Doctor said "This isn't normal" and made an appointment for me with a dermatologist.  So, I was released from the hospital with my 2 day old baby and went right to the dermatologist.  He told me my rash was "impressive" too (just like someone else wrote).  Unfortunately, they were never able to identify it.  I did, however, track my period and symptoms for the next 2 years.   I just went to the doctor again this week because I knew it was directly related to my cycle.  I know when I ovulate and my symptoms always start at that time and then go away when I get my period.  I didn't have any real horrible outbreaks during this 2 year time, but I had ridiculous pelvic itching and redness that was embarrasing and well, just plain unladylike.  This information was able to help the Doctor identify Autoimmune progesterone dermatitis.  She kept saying, I'm sorry.  It's not a good thing and the treatment may not be very good.   I didn't care though, I was so happy to just have a name for it.  It felt good to know I wasn't "crazy".  People suggested the outbreaks were from stress, and I refused to believe that.  It also explained why I never had any problems while I was breast feeding. I didn't have my period so I didn't have the progesterone influx. 

Thank you to all of you who wrote before me.  It does feel good to know I'm not alone.  Does anyone have any suggestions for treatment?  After I have the patch test done, I'm going to an OB/GYN that is familiar with this disease to talk about treatment.  Thanks!

ihaveaipd ihaveaipd
36-40, F
4 Responses Mar 5, 2009

I've received over 50 emails since posting here but for some reason they all keep coming thru blank at the address I left, not sure what's up with that. Here is my personal email to contact me:<br />
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loricody1@comcast.net<br />
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My facebook account devoted to APD/AIPA sufferers with all of my links, website, story, research, treatment is:<br />
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http://www.facebook.com/home.php#!/profile.php?id=100001460848651<br />
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or you can do a search for me: Lori Cody (Springfield, IL)<br />
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Hope I don't miss anyone!

Hello! I have AIPA, autoimmune progesterone anaphylaxis! It is the life threatening form of the progesterone allergy and I survived 24yrs without diagnosis or treatment. I ended up having to do all of my own research, natural treatments to survive, and demand testing and diagnosis of this rare condition. Actually not as rare as doctors think and they seriously need to educate themselves. My treatment options offered by the docs were extremely limited with possibly more severe complications. I developed my own natural treatment that is currently patent pending and has maintained remission for me for a little over a year. No ER visits, multiple organ failure, massive hives or swelling, breathing distress, etc. I still have some very minor glitches simply from being autoimmune but my treatments have enabled me to have quality of life and health for the first time since puberty. I am now 35 yrs old! Other women with the milder form, APD, have also been using my treatments with great success and complete remission of hives and swelling. Here is my full story about my battle with AIPA and the treatments that I developed.<br />
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http://hubpages.com/_4forums/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-1<br />
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I published my story to spread awareness for this "rare" medical condition. I hope this helps and Please feel free to contact me at: info@awarenessforaipa.com

Unfortunately, I have been to a Dermatologist and an Allergist, but neither were able to help me. They didn't know about AIPD so I was very frustrated. My appt. with the OB/GYN isn't until May so I'm waiting patiently for treatment options. As far as treatment options go, I've heard everything from using certain birth control pills to removing the ovaries. I'm anxious to see what my Doctor recommends. (I've already checked with her and she does at least know what AIPD is so she should be able to help)

I have the same thing I do believe. Right before my period--a couple of days--and sometimes in my period I either have hives, face swelling with tingling of the lips. Only with my period. Have you found out a treatment yet? I am really tempted to try to get a hysterectomy with ovary removal. Please help