I Survived Apd

I am 41 years old.  I have 3 daughters.  I was on birth control for 15 years 'til 30.  I started having kids at 33.  I had 3 girls within 4 years.  I took synthetic progesterone during first months of final pregnancy due to low progesterone readings.  I have/had no other medical conditions or allergies.  6 months after last child being born, I started suffering what my husband and I thought was the flu, although during the flu-like symptoms, my hands were red and itchy.  Separate experiences included hives and throat closing without warning.  Those symptoms would literally come out of nowhere.

Eventually, the flu-like symptoms of nauseau, diarrhea and vomitting would begin to coincide with hives, throat swelling and unconsciousness.  I found myself in anaphylaxis.  After battling this thing for about 3 1/2 years.  I saw primary care physicians, ER doctors, oncologists thinking I had carcinoid syndrome - (carcinoid is a form of cancer; the syndrome is metastisized liver from carcinoid), allergists and my gynecologist.  I was tested for food allergies, carcinoid and frankly, mental psychosis.  During the 3 1/2 years, I had anaphylaxis 4 times but until a doctor can prescribed an Epipen, my husband and I were on our own.  Thankfully, we are resourceful!  LOL

After scowering the Internet, I made a connection to a doctor in Washington, DC who referred me to an allergist in Atlanta, GA.  I finally found 2 doctors in Atlanta that knew or at least had heard of the condition.  HOWEVER, neither one of them had experienced symptoms this severe.  Most of their experience was with women who had been able to manage their APD.

The first step was to try to manage the symptoms from APD.  Triphasil birth control pills were prescribed and I felt back to being my spunky little self.  Even my husband noticed an immediate change in me.  I was also prescribed Benadryl, Zyflo, Xyzal and Singulair in the event I had any kind of allergic episodes.  After 3 months of Triphasil, the allergy then took a turn for the worse.  I tried to stay ahead of the allergy.  We could predict when the episodes would happen, usually within a day or so of the predicted date.  Finally, the allergist did progerstone testing in pill form and within 20 minutes of injesting 100 mg of progesterone, I started anaphylaxis.

On April 3, 2009, I went for a 5k run by myself.  (this event was not out of the ordinary)  I was at mile 2 3/4 when the first symptoms of an allergic episode began.  I finished the run to my truck and immediately took my trifecta - Zyflo, Xyzal and Singulair, then drove home.  I left the garage door open, the kitchen door open to the house, got my Epipen, got a portable phone and my calling list in case I needed to phone someone.  I had a plan of attack in the event an allergy episode progressed to a much worse event.  Hubby and kids were at store and I happened to be alone.  I went and laid down on the bed and timed the withdrawal of hives and itchiness while the episode was being counteracted by the allergy medications.  The hives and throat swelling had subsided within 40 minutes of ingesting meds.  There was no physical evidence of  hives and no itching when the gastrointestinal portion begin 40 minutes after ingesting trifecta meds.  After the gastrointestinal portion of the anaphylaxis hit, I passed out on the bathroom floor.  I briefly woke and no longer had the strength to inject Epipen.  I dialed 911.

When the first responders arrived, it was determined I had no blood pressure and no pulse.  The EMT lady arrived.  I was unconscious and unresponsive.  I was turning blue.  They placed me into the ambulance and some of my neighbors  had gathered by that point.  One of my neighbors asked the EMT lady if this was my anaphylactic episode.  That neighbors inquiry prompted the EMT lady to inject epinephren on the drive to the hospital.  My oxygen level was at 89%, no blood pressure, no pulse, unresponsive and blue.

I don't know how long I was in the hospital when I finally felt as if I could breathe again and I finally opened my eyes.  The first measurable blood pressure was 60/40 - coma state.  Nonetheless, within 3 weeks of that episode, I had a full hysterectomy.  I currently wear an estrogen patch and am back to my old self or dare I say, even better!  :)

I don't wish this on anyone and each woman who has this must make their own decisions and choices in conjunction with their family and doctor(s).  I can share my story and cannot tell you just how thankful I am to be able to share this story!

IsurvivedAPD IsurvivedAPD
41-45, F
7 Responses Mar 16, 2010

Don't know if I will have any luck of you seeing this as it was written 3 years ago. I have been suffering from undiagnosed severe anaphalaxis for about 1.5. Years. I have been intubated several times and had a tracheostomy placed. They just tested and found I am allergic to progesterone and wil most likely opt to have a hysterectomy preformed (29 years old)

I am recovering now from my full hysterectomy, I am still dealing with the "rash" as I call it or hives too. I do caring an epipen with me at all times. I have been miserable since all of this started 2 1/2 years ago. With researching and finally getting a female Dr to listen to me regarding with the break outs worsened... I went into anaphylactic a handful of times myself, it is very scary. Not only for me but for my kids as we lost their Dad, my husband a few years back. I am hopeful that the itching will subside, but as I lay here, I am loosing hope as each day passes. I am going to talk to my Dr about the estrogen patches, because now the hot flashes and sweats have kicked in on top of everything else. So grateful to hear I am not alone fighting this battle. Thank you for posting your story, I now feel like it will ease up soon.

I am so glad you made it through the horrible experience and thankful you shared your story. I just recently posted my "short" story of whats been going on with me. Im hoping I find the answer soon....

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 />
<br />
loricody1@comcast.net<br />
<br />
My facebook account devoted to APD/AIPA sufferers with all of my links, website, story, research, treatment is:<br />
<br />
http://www.facebook.com/home.php#!/profile.php?id=100001460848651<br />
<br />
or you can do a search for me: Lori Cody (Springfield, IL)<br />
<br />
Hope I don't miss anyone!

I appreciate you posting your experience for our benefit. You traveled a long hard road. I've only been ill for 2 years and it's been such a hard 2 years. I'm ready to move on and get surgery. You are wonderful for sharing and I appreciate your story very much. Its inspiring to hear from you. My own daughter can't wait to get the new me after surgery. She makes the point that at least their is a cure with surgery. In that way, I do feel better.

Thank you again!!!

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 />
<br />
http://hubpages.com/_4forums/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-1<br />
<br />
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

I am quite certain that the rash that I have dealt with for the past nine years is caused by APD. Being from the Atlanta area, I would love to get the name of the docotr you worked with. As you can imagine, I am having difficulty finding a doctor who has experience with this condition. Please contact me at charityshaw76@yahoo.com. Thank you!

Wow that is some story. I am pretty sure I have APD also. I had it as a teenager but went on birth control early so never recognized a pattern and I think the birth control may of kept it at bay. I have been on the pill off and on in my life. Finally went off of it about 2 years now. I had my severe reaction but not as severe as yours. I was off work for a week due to the itchiness and swelling of my hands. The doctor I saw asked me about Autoimmune disease, so he was on the right track but no history in my family so it was dismissed. My doctor and I figured it was either stress as my job can be stressful and also an allergic reaction to something. I noticed a pattern though that everytime I got my period I would get dermititis on the palms of my hands so I googled dermititis and menstrual cycle and APD came up. I went to my doctor and she had to look it up as she had never heard of it either. I am being referred to a dermatologist and also I let my fertility doctor know since I have read it can cause miscarriages. My periods are not regular. My last cycle was 41 days but prior to that it had been 28 days for about two months. I think I may be going through menopause early. In September, October and November of last year my periods were way off and I think it may of been the start of something. I became very irritable and noone wanted to be around me. Just not like myself at all. I still feel down and blue sometimes. My hormone levels were checked and everything came back okay. WIth this last menstrual cycle I never got no dermitits and the last few have not been severe. So I am hoping maybe it will go into remission again. I am glad that you had children it gives me hope especially since your reactions were so severe.