I'm Allergic to My Hormones!-Awareness for Progesterone Induced Anaphylaxis-Autoimmune Progesterone Anaphylaxis, Part 3

Hoping to spread awareness for the autoimmune diseases, AIPA & APD, to help others that remain undiagnosed, untreated, and medically neglected.
Hoping to spread awareness for the autoimmune diseases, AIPA & APD, to help others that remain undiagnosed, untreated, and medically neglected.

Treatment Options for AIPA/APD

Due to the medical professions lack of knowledge on Progesterone Induced Anaphylaxis, the prescription drugs they were giving me throughout the years, caused more damage, conditions, and diseases. Although getting diagnosis was a huge milestone and relief, treatment was another problem. There are minimal treatments for Progesterone Induced Anaphylaxis and due to the liver disease, seizure disorder, and my increased severe reactions to prescription drugs, my treatment options were extremely limited. I was now reacting to most prescription drugs, a lot of foods and drinks, antihistamines began triggering seizures, and I could not tolerate any kind of synthetic hormone treatments. My Immunologist consulted my Gynecologist with his findings and suggested two treatment options.

The first was Lupron injections which would shut down my ovaries and kick me into menopause, stopping the production of Progesterone and Estrogen both. Not having estrogen at the age of 34 could cause other complications like Osteoporosis, severe depression, atrophy in female related areas, and I was warned that my mild seizure disorder could more than likely turn into Gran Mal Epileptic seizures. The other complication with this treatment is that it is a once a month injection and there was no guarantee that I would not have a severe allergic reaction because once injected, it couldn’t be removed. I can always just stop taking pills if I react but how would they stop an anaphylactic reaction to an injection that stayed in my system for an entire month.

The other option they offered was a Hysterectomy. Again, removing both Progesterone and Estrogen from my body and still facing the complications of removing Estrogen completely. I couldn’t have hormone replacement therapy after surgery because the purpose was to get rid of my hormones, and I have never been able to tolerate synthetic hormone treatments in the past. With both of these treatment options, I ran further risks with no guarantees. My doctors didn’t know what either of the treatments would do to me. They were purely experimental.

After having further tests done by Immunology, I was diagnosed as also being allergic to my own sweat (Cholinergic Urticaria). This made the treatments my doctors planned even more uncertain as to whether they would help or hinder. What do I do now, have all of my female organs and my sweat glands removed?! I was teetering on a double edged sword battling one vicious cycle after another.


Choosing a Treatment for my Progesterone Allergy

My husband and I had discussed the treatment options that the doctors were willing to try to decided that if I could not find a way to control the autoimmune diseases on my own, then I would have to take the risk of going through with the hysterectomy. We would just have to hope and pray that I didn’t develop further medical problems. We both understood that the surgery could help or could make things worse and once they removed my uterus and ovaries, there was no turning back if things ended up worse. In the mean time, while I researched further and tried various natural treatment options, my Immunologist prescribed Epinephrine injections (Twinject Epipens), Albuterol inhalers, and Dicyclomine for anaphylaxis. One Epipen is kept with me at all times and the other is kept at home. These are a few of the medications that my body will still tolerate and I didn't have much other choice anyway. I would just have to deal with the side effects. This bought me some time to research further, experiment, and make an informed decision.

I told my Immunologist that I would find a way to get better on my own using natural methods from my research. He looked at me with a smirk and replied that there was no way anyone could cure the Autoimmune diseases that I had and I was facing very difficult decisions. I was determined to avoid anaphylactic shock or put myself in further harms way by going through with possibly more dangerous experimental treatments. Back to the drawing board and I went researching what little information there was on the web about my medical conditions. I experimented repeatedly with various natural treatments one after another with improvement in some areas and failures in others. Before I was diagnosed, I was only able to research each individual symptom and natural treatments. Getting proper testing and diagnosis has allowed me to look for treatments for the actual autoimmune diseases, not just the individual numerous symptoms I was suffering. I filtered through the bits of information that I could find on AIPA/APD and started developing a plan for natural treatment options.

Allergy Treatments

Typical allergies are treated with antihistamines or allergy shots (immunotherapy) for more severe cases. Antihistamines do not work for Autoimmune Progesterone Anaphylaxis because they don’t actually remove histamine from the blood and they were causing me to have seizures. Allergy shots work by injecting the patient with an allergen, which is the substance a person is allergic to, thus allowing the body to build up a tolerance to the allergen. The injections hopefully stop allergic reactions and autoimmune responses.

I remembered a time in my life when I was completely healthy for a while. These few times were during pregnancy when both my Estrogen and Progesterone levels were skyrocketing to be able to carry a baby. My hives and swelling increased during the first few months of pregnancy and then it all just stopped. For the first time since childhood, I was healthy! Yes, I was healthy but I also began having complications in 2 of my pregnancies and went into labor at 4 months and 7 months. Low Progesterone levels and an allergy to Progesterone can cause the female body to spontaneously abort. Somehow my body wasn’t producing enough Progesterone to maintain pregnancy but was producing enough to build up a tolerance and stop my reactions, just like allergy shots do. I was put on IV’s and prescriptions to maintain pregnancy and keep my own body from miscarrying. Thank God, it worked! My children are nothing less than miracles! Not long after giving birth, I began to suffer again from my autoimmune disease. After researching how allergy shots worked by increasing tolerance and knowing that the increase in Estrogen and Progesterone during pregnancy worked in the same manner, I began thinking. Maybe, if I gradually raised my hormone levels like what occurs during pregnancy, my body would build up a tolerance and stop reacting. How do I do that?

Self Medicating with Progesterone or Estrogen

Synthetic Progesterone injections (Depo Provera) used as birth control obviously wouldn’t work to build resistance since that’s what my Immunologist used to get my body to react and diagnose me. So I went and bought some Wild Yam Cream. It’s a cream the delivers a natural Progesterone precursor through the skin. It absorbs into the skin just like a nicotine or morphine patch.

Anything with a small enough molecular size that you apply to the skin goes into the body and blood stream. This method of treatment is called transdermal delivery. I applied a small amount of the cream and big mistake, within a few hours I had kicked myself right into anaphylaxis. Well, that certainly didn’t work out the way I had planned! Through my research I found out that increasing estrogen causes the ovaries to release more Progesterone. A slow increase of my OWN bodies Progesterone was maybe what I needed to build up a resistance and a natural source of Estrogen could quite possibly do just that.

When I read about other possible medical treatments, I read a few case studies of doctors who experimentally put women with Autoimmune Progesterone Dermatitis (milder form of the Progesterone allergy) on a synthetic estrogen. In some cases it worked just like when I was pregnant and in some it did not. Synthetic estrogen is an estrogen used to treat menopause symptoms or estrogen deficiency. It just so happens that treatment with an estrogen also increases the ovaries release of the bodies own natural Progesterone if your not going through menopause. The estrogen used in these cases were conjugated estrogens derived from the urine of pregnant female horses. They are responsible for many serious side effects and an increase in female related cancers like breast and cervical cancer. This form of estrogen was not a viable option for me either.

I’ve already had fibrocystic breast disease and fixed that problem naturally, so I didn’t really want to risk it coming back in the form of breast cancer. The prescribed estrogen patch is also a synthetic form and my body was not tolerating synthetic hormones of any kind. I have never been able to tolerate any kind of birth control containing synthetic hormones. The synthetic estrogens are very dangerous so I went looking for a more natural, beneficial form of estrogen. There are many sources of safe, natural estrogen called phytoestrogens that are derived from plants. Soy, Don Quai, red clover, and Fenugreek are just a few but there was one in particular that caught my eye...Continued in Part 4. (See below for Parts 1& 2 and my new website for awareness of AIPA/APD)

Preview of I'm Allergic to My Hormones!, Part 4

On a happier note, did I find a natural treatment for my "incurable" autoimmune disease? YES! As of today's date, I can honestly say that I am currently in remission and have been for about 11 months. I say remission instead of cured because I don't know if there is a possibility of relapsing. In my next Hub (Part 4), I will tell you how I've done it. Although I still suffer from stomach pain a few days a month, I'm no longer suffering weeks of horrible symptoms. I haven't had a major seizure in several months, no hives or swelling, no major infections, and I've had no anaphylactic reactions before my menstrual cycle. What I have had is some really great side effects from my treatments to add to my new lease on life. Many women may be very interested in what I have done to get my life back.


To get testing and diagnosis

List of Doctors and Clinics that are aware of, test, and diagnose Autoimmune Progesterone Dermatitis / Autoimmune Progesterone Anaphylaxis:


Dr. David Wright (Allergy, Immunology, Internal Medicine)
Central Illinois Allergy and Respiratory (AIR)
543 W Miller St Ste A
Springfield, IL
(217)522-5596

Dr. Andrey Leonov, MD
Allergy and Asthma Clinic
229 Hammes Avenue
Joliet, Il. 60435
Phone: 815-744-2300
***on a side note, if anyone traveling a distance to be tested, I would call and talk to him and let him know ahead of time. The progesterone is not something they have in stock at the clinic to test. Also, my sample was in sesame seed oil, so if you are allergic to nuts, ask for a different base. Hope this will help some people.


Dr Peter Lee (Ching Sang)
Allergy and Immunology
(250) 370-0318
Suite 250, 1641 Hillside Ave, Victoria, BC V8T5G1 Canada
***There are two Dr. Lee in Victoria who both practice Immunology , so make sure you have the correct one:)


Instituto Universitario USP Dexeus
C/ Sabino de Arana, 5-19
08028- Barcelona. España (Spain)


Dr. Katheryn Brown
Allergy Clinic of Tulsa, OK
(918) 307-1613

Mayo Clinic

Arizona
800-446-2279 (toll-free)
8 a.m. to 5 p.m. Mountain time, Monday through Friday

Florida
904-953-0853
8 a.m. to 5 p.m. Eastern time, Monday through Friday

Minnesota
507-538-3270
7 a.m. to 7 p.m. Central time, Monday through Thursday
7 a.m. to 6 p.m. Friday

International Appointment Offices

Mayo Clinic in Florida
904-953-7000
904-953-7329 (Fax)
Intl.mcj@mayo.edu
Office hours: 8 a.m. to 5 p.m. (Eastern time) Monday through Friday

Mayo Clinic in Minnesota
507-284-8884
507-538-7802 (Fax)
Intl.mcr@mayo.edu
Office hours: 7:30 a.m. to 5 p.m. (Central time) Monday through Friday

Mayo Clinic in Arizona
480-301-7101
480-301-9310 (Fax)
Intl.mcs@mayo.edu
Call toll free from Mexico: 001-800-010-1390
Office hours: 8 a.m. to 5 p.m. (Mountain time) Monday through Friday
Required Information

When arranging an appointment, please provide:

* the patient's name as it appears on the passport (last, first, middle)
* patient's gender
* patient's address
* patient's date of birth
* direct patient telephone number
* direct patient fax number
* patient's email address (if available)
* a brief explanation of the current medical problem (in English)
the preferred date of appointment
* whether the patient will need an interpreter, and if so, what language


Please check this list frequently, as I will update when I find new docs/ clinics!

More by this Author


Comments 16 comments

Pamela99 profile image

Pamela99 6 years ago from United States

Your story of autoimmune disease is horrible, but I'm so glad you have found a cure, at least I hope your good health lasts. Your situation is very unusual which is why the doctors probably couldn't figure it out. I have done a lot of research about autoimmune diseases but I have not read about one as bad as yours.

I am anxious to learn what you have done as a cure. I am so glad you have 2 healthy children and I would say they are a miracle considering the shape you were in. Good hub.


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Thank You So Much Pamela! I should have the last hub done in a week or two, giving my brain a rest, lol. I've only suffered the life threatening symptoms for the last 3 yrs. or I probably would have never been able to carry my children. I had my tubes tied to avoid heartbreak of losing a baby at 5 or 6 months due to female problems. I actually was successful at having 3 healthy children and only 2 were complicated, all 3 were premature. That was my biggest drive to get diagnosed because I was horrified of passing this on to my children. At least now, we have an idea and know what tests to run if they start having serious problems. Yes, my situation is very unusual and I probably shouldn't have been so hard on the doctors in my writing, I got a little heated when I was writing about my experiences which is why I added what I did at the end of this hub. I have a few different treatments but 1 major one that has stopped my reactions so far, keeping my fingers crossed. Have you done any research into natural treatments for your conditions? I have read about yours quite a bit, especially the Lupus, and a lot of my symptoms were very similar sometimes. I've read a great deal of information about others that were actually able to cure Lupus naturally. Let me know if there's anything further that you would like to know about. Best Wishes!


suzanne 6 years ago

I see where you say: On a happier note, did I find a natural treatment for my "incurable" autoimmune disease? YES! As of today's date, I can honestly say that I am currently in remission and have been for about 4 months. I say remission instead of cured because I don't know if there is a possibility of relapsing.

I can't find where you say what medications or treatments put you in remission. Was it the natural estrogen you started taking? I'm 47 yrs. old still having periods, diagonosed with Fibro and Chronic Fatigue about 10yrs.ago I started birth control NuvaRing almost 3 months ago, had miscarriage 2008, and 1/2010. My symptoms; bad heartburn, nauseau, anxiety attacks, depression, brain fog(can't even complete thoughts, words or sentences sometimes, like the brain has been drugged) trouble sleeping, itchy very dry skin, dry itchy eyes, blurred vision, low blood sugar, itchy scalp,bad heavy fatigue, burning aching pain in muscles, many loose bowel movements with cramping, I'm sure there are more. These symptoms got worst when I was pregnant, but I didn't know I was pregnant until about the 4 month. I was spotting during this pregnancy so I just thought maybe I'm starting menopause, but I wasn't, I was pregnant. I have tried very low dose progesterone drops in past and I got immediate cramping and loose bowel movements, and nausea and indigestion. Never thought about this again until now. Its been 3 1/2 months since my miscarriage/D&C and on NuvaRing almost 3 months. The 1st 2 months on NuvaRing all my symptoms were bad but I figured it could still be pregnancy hormones. But, when I took the NuvaRing out on 2/24/10 and my symptoms started getting better, no more cramping and loose bowel movements or dry itchy skin, eyes and lips until I put the NuvaRing back in on 3/3/10, within 1/2 hour of putting the NuvaRing in I started cramping and having many loose bowel movements and itchy dry skin. I live in Kentucky and I have researched trying to find a doctor who knows about allergy to progesterone, but I'm not having much luck until I ran across your info. Could you please tell me the doctor and his phone number of who helped you? Do you know where you can buy or what kind of testing should be done to see if you are allergic to progesterone. I have asked many doctors here, OB/GYN, and Allergist if they could test me for the progesterone allergy, and they don't know what I'm taking about. Do you know the name of the progesterone allergy test? Any info or help you could give me would be so greatly appreciated. Thank you so much, Suzanne (newton.suzanne@yahoo.com)


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Suzanne- Thank you so much for your comment! I appreciate your ability to put all of the personal info that you have here on my hub. It helps other women with problems like this! So sorry to hear about your miscarriage! I will contact you further via email since it is a sensitive, personal subject. Sorry I haven't been able to publish Part 4 of my journey with the good news as to my treatment but I'm working on it. Time is hard to find right now since I'm back to work, Yay, back to work! My current treatment that has put me into remission for the last 5 months is one that I made on my own to avoid toxins in prescriptions and derived drugs. Mine is all organic. I'm highly sensitive to prescriptions and synthetics. Just wanted to let you know that most women who suffer with Autoimmune progesterone dermatitis/anaphylaxis have usually had exposure to some other form of progesterone before, like birth control, mainly Depo Provera. I have never been able to take birth control. I'm pretty sure the nuva ring is triggering symptoms. The autoimmune disorder is extremely rare and/or most doctors do not even know it exists. I believe many, many more women suffer with this condition and it just never gets diagnosed due to the medical professions lack of knowledge. I will explain more in an email!


Cheeky Girl profile image

Cheeky Girl 6 years ago from UK and Nerujenia

Wow, if I ever get some ailment, I will remember that some ailments like autoimmune can be so much worse. You done some amazing work in researching this condition and it must have been hell trying to figure things out so you could develop a treatment. You have done an amazing job of taking a subject that could be difficult and explaining it easily. Well done! Thanks for this!!


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hello Again CG! Thanks so much for all your wonderful compliments and comments! I'm so glad you think I explained my situation well. I'm editing this series constantly trying to make the condition, diagnosis, and treatment as easy to understand as possible. It's so difficult to try and explain 24yrs of my life and living with this rare entity in 4 little hubs, lol. Trust me, this is the very,very short version. The hell I have been through has already been so worth it, it's amazing being able to help others that suffer with AIPA and/or other rare and unusual medical problems. The medical profession can really beat people like myself into utter hopelessness and I hope my story motivates others to stay strong in their search for diagnosis, self help, and treatment. It can be a very long, painful, and, lonely journey. I know that many, including your friend, can relate to these feelings very well and I'm sure she will soon find resolution.


Pollyannalana profile image

Pollyannalana 6 years ago from US

Welcome to hubs, sounds like some interesting stuff here, I have had doctors as well as call me a liar all through my life, some finding a problem eventually but never any apologies[ maybe I will find some answers with you, I am allergic to everything!


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

Hello Pollyannalana, Thanks so much for your comment! I have another hub called "Explanation of Allergies" which touches on the underlying condition of all allergies. One that I truly believe in and the medical profession fails to acknowledge. I know exactly what you are talking about and help others with very complicated medical problems that doctors can not figure out. I've done a great deal of medical research into rare and undiagnosed medical conditions. Especially allergies and autoimmune diseases/disorders. Please take a look at this hub and I also have a website devoted to helping others that suffer similar medical problems as you. My website is www.awarenessforaipa.com. The link is above. There is a blog/forum section that you may find very interesting (still have many stories to import because it's very new) but there is some great info on there and other stories. Please feel free to visit my website and post your comments/ questions and I will do my best to help in any way that I can!!!


Ben 6 years ago

Great post. I am so sorry to hear about all that you went through. I too have cholinergic urticaria (http://www.cholinergicurticaria.net/). I have had this for nearly 8 years on/off, so I can relate to some of your frustrations and troubles.


She-rah profile image

She-rah 6 years ago from Springfield, IL Author

HI Ben, Thanks so much for your comment! No apology necessary, my experiences have given me great insight to help others and it's very worth it. Yes, the cholinergic urticaria is a real pain. Have you looked into the condition called histadelia (born with naturally high histamine levels)? I believe it to be the main source of my autoimmunity but still ponder on that one a bit. The supplements recommended for the condition do help, know from experience. Do you find that you build up a resistance to the hives during repeated exposure to heat/sweat? I do, was just curious. Feel free to visit my website and participate in the forum at www.awarenessforaipa.com. Lots of people like us and really great info. from others with similar stories if your interested.


Meljce 5 years ago

Omg, I'm glad you are doing better. I have been searching the web to help refigure out what is wrong with me. About three years ago i had a complicated pregnancy and delivered my son early because of a severe allergic reaction. Then about two weeks later i had an anaphalatic reaction, went to er barley breathing had to get epinephrin.the reactions started regularly after that, always the same, vomiting, diaharrea, hives, hot red skin, swelling then trouble breathing. I kept a food log and never could find a common food that happened, then the er doc suggested that i might be allergic to my own hormones. So i started noticing that i have the reaction always towards the end of my period every month. I don't have medical insurance so I just take benadryl every four hours during my period, it hasn't prevented my reaction completely but has helped them become less severe, i have not needed my epi pen in almost three years. But i never go anywhere without benadryl. When i was younger i always had severe diaheria during my periods and my doc said no milk, or i had irritable bowel syndrome, and the he said i was a hypochondriac and never took me serious about anything. Im glad I'm not crazy, reading your story has giving me hope. Im trying to find a doctor to see.


She-rah profile image

She-rah 5 years ago from Springfield, IL Author

Hello Meljce! So glad my story has given you hope! Definitely sounds like some sort of hormone allergy but your symptoms are not exactly in line with timing. Most APD/AIPA symptoms occur 3-10 days before your period. There are cases where the anaphylaxis took place during menses but usually in women with irregular menstrual cycles, also making testing and diagnosis very difficult. There are other hormone related allergies that cause catamenial anaphylaxis where symptoms occur during a woman's period instead of right before. It is also considered very rare and the only real medical treatment option is oophorectomy. I was diagnosed with IBS many years ago and that symptom of mine actually occurred during my period with other symptoms occurring mostly before my period. It is VERY difficult to find a doctor to test or treat this condition, most are unaware of it's existence. You may want to try Allergy/Immunology or Dermatology in that order, lol. Most of the women I work with have to self diagnose and never do find a doctor to test or treat. They are pegged as hypochondriacs just like I was for 24 yrs until I found an Immunologist that was familiar with the autoimmune disorder. The docs treating like I was a hypochondriac or psychosomatic ultimately caused the progression of my disease to become almost fatal on numerous occasions. Your complicated pregnancy and continuing progressive symptoms is a big clue as to your anaphylaxis/autoimmunity being hormone related. You will probably have to draw a picture in crayon for the docs to get them to make this connection, lol. And make sure you take them all the info you can find on the condition so you are somewhat armed for battle. Don't let them get you upset or feel like your crazy, your not crazy, they just DO NOT understand and are not knowledgeable of APD/AIPA or catamenial anaphylaxis. Very frustrating, I know! You may want to call several different doctors offices and find out if the doc is even familiar with the condition before you set up any appointments. Just saves time and lots of $$$. Hope you have a great day and feel free to ask me anything!


Jennifer Hogan profile image

Jennifer Hogan 3 years ago from San Marcos, California

I am glad to see that you shared your story. I was diagnosed with progesterone allergy several years after I completed my 7th IVF cycle.

I wanted a child and suffered through the IVF process even though I suffered excruciating migraines. During most of the 3 1/2 years that I was going through IVF I was also kept on prednisone. About 6 months after my last cycle I developed hand eczema, and like you, it would flare 10 days before my period. The hand eczema grew to be flares that involved my entire body, the plaques would get so bad that my fingernails and toenails would lift off the nail bed and fall off and my face looked like I had gotten a bad chemical peel. I would be miserable for 10 days, get my period and heal until the next cycle began.

Other discoveries during IVF were that I had cystic ovaries (up to 40 cysts would develop during ovulation), my T-cell count was off the chart (literally above the laboratories measurements) and I was allergic to my husbands sperm - my body attacked it like a virus.

It took 3 years of going to dermatologists that offered no relief before I found an article on progesterone related dermatitis after IVF.

After finding the articles and taking them to my dermatologist he sent me to an OBGYN who didn't believe me. He told me he was going to give me an injection that would stop my periods for 6 months and if my symptoms disappeared I was right, but that he didn't think they would go away. He told me eczema is not hormone related. The shot he gave me was depo provera. By the time I got home I had weeping rash from the top of my head to the bottom of my feet. My entire body blistered and peeled.

Like you, I did not want to go through a hysterectomy at 38. But I worked with my IVF endocrinologist and we found that if I could control the spikes in progesterone I was symptom free. I went on birth control pills and stayed on them, no 7 days off each month - just a steady one pill a day until I was symptom free for 6 months. Then I went off the pill and was clear for about 3 months and started getting symptoms again, so I went back on the pill for another 6 months. Each time I went off the pill I went longer symptom free, but the symptoms always returned until I went through menopause. I have not had a period or eczema in over a year.

Side Note - I remember my mother having severe hand eczema when she was in her 40's and it went away after menopause and my niece, my mother and I all suffered hormone related migraines.


Amanda 2 years ago

Hi,

I recently, as in for the past year and a half, have been suffering from terrible symptoms related to my menstral cycle. They appear at the onset of my period and last a few days. I get terrible hives all over my body that are so itchy and on fire I feel like my skin is crawling. After doing a bunch of research, I believe I have Catamenial Anaphylaxis, however, have yet to visit a doctor who has remotely helped. Most say I'm having a reaction to a food such as peanuts which I guess is possible, however, I eat peanuts all the time and I only react when I have my period. Most also say that taking drugs to stop my menstrual cycle would be the best route for me, essentially making it impossible to have any children, which is a terrible thing for me (an otherwise healthy 25 year old) to hear. I would love any insight you have to these terrible, terrible symptoms and how you have controlled them.


Weronika 2 years ago

Hello! You are a very strong woman as you managed to survive all of those horrible events and didn't stop fighting for a true diagnose!

Can you tell me if the 4th part of your story (the cure:) is availibe to read online?


naomichamhene@yahoo.com 2 years ago

It was along this story i finally hopefully you will try to help me on how i will go through this devastating condition that takes me almost 4 years now.

Thank you in advance

Naomi

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