My personal thoughts about life with a disability and all other things I consider important in my life.

Monday, April 14, 2008

More on Progesterone Allergy

I've gotten more than one person emailing me about this possiblity of hormones inducing an allergic response.

I've done a little more research using different words and have come up with some more links. I'm also thinking of a theory to state. Not that it'll be of any use, but you never know....

First, some of the articles I've found:


http://www.onlineallergycenter.com/treatments/hormone_imbalance.htm
While I don't completely agree with some of the observations and theories, the article makes some very good points.

Here's another:
http://www.clinicalmolecularallergy.com/content/2/1/10

And an excerpt:
While many women complain of worsening acne and water retention during their menstrual cycle, there exist a small number in whom the menstrual cycle is associated with a variety of other skin manifestations such as urticaria, eczema, folliculitis, and angioedema. This condition is known as autoimmune progesterone dermatitis (APD) due to the fact that progesterone is most frequently identified as the etiologic agent. In women with irregular menses, the diagnosis may remain elusive for years. We present a case of APD, and review the current literature in regards to clinical features, pathogenesis, diagnosis, and treatment options.

And another:
Current therapeutic modalities often attempt to inhibit the secretion of endogenous (body-made) progesterone by the suppression of ovulation. Table 2 lists some of the pharmacologic strategies used in APD. Oral contraceptives (OCPs) are often tried as initial therapy, but have had limited success, possibly due to the fact that virtually all OCPs have a progesterone component. Conjugated estrogens have also been used in the treatment of APD. These did show improvement in many of the patients, but often required high doses [2,16,22]. However, due to the increased risk of endometrial carcinoma with unopposed conjugated estrogens, this treatment is not commonly used today [39].

2 of the sources that might be of use:

Snyder JL, Krishnaswamy G: Autoimmune progesterone dermatitis and its manifestation as anaphylaxis: a case report and literature review.
Ann Allergy Asthma Immunol 2003, 90:469-77; quiz 477, 571. PubMed Abstract Publisher Full Text
totext()
Return to text
Slater JE, Raphael G, Cutler G. B., Jr., Loriaux DL, Meggs WJ, Kaliner M: Recurrent anaphylaxis in menstruating women: treatment with a luteinizing hormone-releasing hormone agonist--a preliminary report.
Obstet Gynecol 1987, 70:542-546. PubMed Abstract Publisher Full Text
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Another article excerpt that I had to sign on to PubMed to get to:

Alternatively, leukocytes have progesterone receptors, and progesterone, like many other steroid hormones, can affect immune function. Progesterone can potentiate immune responses to other stimuli, so it is possible that progesterone could be a factor in enhancing allergic reactions or skin reactions caused by other substances or conditions. For example, some women with chronic urticaria (hives) experience cyclical exacerbations of their skin condition corresponding with the menstrual cycle, and it is possible that progesterone plays a role in this process.

If this doc's theory is correct, I'm thinking Singulair might be a good treatment. Leukotrienes are produced by leukocytes and are the cause of allergic inflammation throughout the body.
Please note that Singulair is being watched for mood alteration - as in depression and suicide. Since I am already on an antidepressant, I'm avoiding Singulair.

However, since it has been approved for adult allergies (allergic rhinitis, sinusitis, etc.), and not just asthma, it might be worth it to see if your doc will prescribe it for a 3 month trial.

Another note about Singulair - I did take it before I was on the antidepressant. While I did not note a significant improvement while taking it, the rebound of symptoms worsening when I quit taking it was profound. If you take it and decide to stop, please don't stop suddenly. It might not be pretty.

One of the articles I read has a theory about the connection between hormonal birth control (the pill) and this progesterone allergic response. This makes total sense since prior to the recent SLEW of pills on the market, the incidence of this type of allergic response was virtually unheard of. When the pill first came on the market, it was almost completely estrogen and at very high doses. Since then, it has become a mix of hormones, mostly synthetic and at far lower doses.

Women are taking them for longer periods of time - decades versus a few years. My part of the theory takes this one step further. How many women go on the pill, go off, then start having issues? Mine actually started after my second round of birth control that lasted for a whopping 12 month period. Then WHAM - I was in the ER with hives allllll over my body.

I'm willing to bet there's a very link and the med companies will do anything they can to keep this from being found out. The bottom line, not the patient, is what they care about.

I'd like to work with someone who has the time and ability to go into women's chat rooms to ask if any of them have allergic responses on a monthly basis. I'd like to come up with a FAQs file for them, and I'd like to find out exactly how prevelant it is now. I'd like to know if there is a connection between hormonal birth control (and then subset it into the oral, transdermal and intradermal administration).

Anyone game?

Labels: ,

51 Comments:

Anonymous Anonymous said...

I am definitley interested in talking to you .My story with autoimmune progesterone dermatitis is so similar to you.

6/06/2008 10:25 PM

 
Anonymous Anonymous said...

My English is bad. Sorry.

I have a fertility problem for meny years now. Doctors could't find anything special. They send me on IVF and i was on the progesterone suplementation for four times now. Every time i had bad allergic reaction on my skin after few days of administration and my cycle started. I am wondering if enything was apsorbed from that suplementatinon. When i asked them about that, they told me "it's nothing!"

Now i am testing my natural progesterone (by my own) and it is very low. I also have autoimmune progesterone dermatitis. It started many years ago, but i didn't recognize it. After all i was going through i read about this disorder and i understand that
i have many of it's symptoms.

Now i am wondering, if i have progesterone allergy is it useful to do all that and can i ever achive pregnancy?

7/10/2008 9:24 AM

 
Blogger Leslie said...

Hi.
I have no clue if you can get pregnant or not. I do feel for you, however.
I doubt anything was absorbed from your IVF treatments, but I wouldn't doubt they made you far more sensitive to progesterone.
All I can suggest is taking an antihystamine for the dermatitis - and for the first few days after treatment - should you dare try again. I take benadryl all the time, and double the dose when I start itching from my natural progesterone.
Please stay in touch and let me know how things are going.
Leslie

7/10/2008 10:50 AM

 
Blogger Amberle said...

After the birth of my third son, I went on birth control pills because I was told getting pregnant would be life threatening. I had a severe reaction to the pills, which included swelling of my mouth and lips, and my hands and feet (bilaterally). I quit taking the pill, but continued to experience severe hives once a month, and two years in a row ended up using an epi pen and going to the emergency room for anaphylixic shock. I just got home tonight from the hospital, where I underwent a complete hysterectomy, and found this site. It is my hope that I will no longer suffer from the monthly swelling, as well as regain a better quality of life free from the terrible bouts of bleeding and migraines I was suffering from. I wish I had known Singulair might have been a treatment option.
I have no doubt in my mind that there are many more cases of this that are being suppressed not only by doctors who don't look into it, but by drug companies who wish to continue peddling their potentially harmful products.

1/18/2009 12:54 AM

 
Blogger Leslie said...

Hi Amberle.
I'm so sorry you've had such a difficult time. I'm hoping when you say "complete hysterectomy" you mean the ovaries as well. They are what produce the progesterone that makes you hive out every month.
But at least the heavy bleeding and migraines will be gone. Sometimes, just getting rid of one or two severe health issues will resolve others - the body can focus on those now.
Good luck. Let me know how you do.
Leslie

1/18/2009 8:26 AM

 
Anonymous Amanda_C said...

I just had my sixth stay in the hospital in three years, and I've finally encountered an allergist that thinks I may have a progesterone allergy. I'm glad we can stop talking about my detergent and what I had for lunch that day.

I'd be glad to speak to anyone and share information - I just don't have very much to share yet! My appointment is in two weeks, let the tests commence!

- Amanda
cuprysa at yahoo dot com

3/05/2009 1:56 AM

 
Anonymous Olivia said...

Finally, women talking about their allergy to progesterone! I found it really hard to find any info/stories on the subject.
I'm also undergoing fertility treatment and started taking Prometrium (progesterone supplement). Soon after I started taking it, I started to get covered with red marks (hives?). It's not as bad as some of you as it's only midly itching and I'm still taking it with Claritin once a day.
I was wondering what kind of tests can you do to figure out if you're allergic to progesterone? I'm just wondering if it could be something else...
Thanks.

3/30/2009 5:17 PM

 
Blogger Leslie said...

Hi Olivia.
Yes, it could be something else - and I'm sure the doctors have already told you that. However, having such a coincidence is pretty rare.
I don't know fertility treatment and what type of schedule there is with all of the meds, but if you are having the hives every time you take the Prometrium, you're either allergic to the progesterone in it, or the medium it's carried in. If it's an injection, you could be allergic to the liquid used - unlikely, but possible. If it's a pill, it's much less likely that you're allergic to the carrier than the progesterone itself.
And, if you've been taking the Prometrium for awhile and this is happening only about once a month, the prometrium is making you far more sensitive to your own progesterone production.
While it isn't advised that you take more than one antihystamine, consider taking some benadryl overnight, while you take the claritin during the day.
And if you're allergic to the progesterone, I'd have to wonder if the treatment will work. If your own body is acting like it's a foreign agent that needs to be destroyed, I'd think it wouldn't be able to help produce the eggs like they (and you) are hoping.
Let me know how it goes!
Leslie

3/30/2009 5:59 PM

 
Anonymous Olivia said...

Thanks Leslie for the quick answer. I'll see my specialist soon so I'll let you know what he says. As for the progesterone supp, I switch to another one 4 days ago and still the same reaction. I tried claritin and Benadryl last night (following my docs' advice) but it didn't do anything.
The thing is, it worked... the progesterone was effective: I'm not pregnant but didn't get my periods yet (I have a short luteal phase with spottings usually) so it didn't lengthen the luteal phase... I'll try and see an allergy specialist to figure it out.

3/31/2009 1:46 PM

 
Anonymous Olivia said...

I meant: it DID lengthen my luteal phase.

3/31/2009 1:49 PM

 
Blogger Leslie said...

Hi again Olivia.

I'd have to say the allergist won't know squat about progesterone allergy. You'll have to take him the literature to make him believe it.

I'm so sorry the benadryl didn't work!

How much did you take? You can take up to 50 mg at a time.

Also ask if taking a round of prednisone will interfere with the hormone therapy. There's a thing called a 21 pack of methylpred that would give you a very clear indication of how affective prednisone would be fighting the hives and itching. It's a 6-day run, but the affects should last about 2 weeks, if it works.

Good luck and please keep me posted!

Leslie

3/31/2009 3:13 PM

 
Anonymous Olivia said...

I saw a dermatologist last week and he said it was not an allergy but a pytiriasis rosea. He gave me an anti-viral pill and the rash cleared up very quickly. Itching stopped as well. I can still see some marks but it's pretty much gone... so next month I'll try again the Prometrium and see what happens. Hopefully nothing.
Thanks for all your suggestions :)

I confirm that my specialist in the fertility clinic told me that it was impossible to be allergic to progesterone... I didn't say anything as I first wanted to see the dermatologist...

4/17/2009 1:00 PM

 
Anonymous justagirl said...

i have been diagnosed with a progesterone allergy - after years spent with rheumeaologists for joint pain, migraine, explosions of canker sores, malar rash, fatigue, and kidney problems. i was on birth control for years and had low level reactions, but after i got pregnant my body went nuts. when i went back on the pill afterward it continued in a downward spiral until my kidneys started to fail. i was evaluated for every autoimmune thing you can think of with many of the results being inconclusive. most of my doctors thought i was crazy when i kept telling them how everything would come and go with my period. coming off the pill made a huge difference, but i still have to turn to steroid treatment during some cycles. i was finally evaluated by a specialist who sent my case study to several other specialists studying hormone allergy. it is a newer area of study but many doctors now beleive that autoimmune hormone issues are real and that they may be the reason for the gender disparity in autoimmune diagnosis. if you have a milder case i would talk to your doctor about low level daily steriod treatment. if you have something more serious high level steriod "rounds" help tremendously, but there are side effects. my doctors have also discussed the option of ovary removal as a means of treatment, but i am not personally ready for that yet.

best of luck - i know it's hard but putting a name on it really does make a word of difference.

4/18/2009 7:46 PM

 
Blogger Leslie said...

Just A Girl,

I am so thrilled you've got the actual diagnosis and that you didn't have to tell the doctor it was the correct one.

I fully believe between The Pill and fertility treatments, we are making ourselves allergic to progesterone. I had no issues until I used NuvaRing. I'm not saying it was that specific form, but it was the second time on birth control for me, and it created profound depression, along with a host of other symptoms.

I went off it and had such severe allergic responses I was amazed and confused. I would LOVE to be on low level steroids, but my doc is too scared of that due to the osteoporosis factor. So I live with the monthly heightening of symptoms and the daily crap.

Please stay in touch. We are the first to know and can only help each other by staying in contact.

Leslie

4/18/2009 8:35 PM

 
Anonymous Theresa said...

Progesterone Allergy is real, girls!

About 4 or 5 years ago now, I was undergoing fertility treatments. In the process, I found out I was allergic to progersterone...hives with the pill AND with the suppositories (used those when I got pregnant). We assumed it was something in the synthetic form at first, but after the allergy was triggered, it happened almost monthly. Because I don't ovulate every month, I don't have the reaction every month. I can tell you if I feel ovulation that around ten days later, I'll get itchy hives. It's not rocket science. Both my endocrinology/fertility specialist and my obgyn acknowledge that allergy. I take Singulair for asthma, but when my progesterone level spikes, out comes the Benedryl! I hope you find what you're looking for...maybe just a doctor that listens? That's a good place to start. You know your body...you need a partner to help you maintain it. :) Good luck! ~ Theresa

4/23/2009 3:14 PM

 
Anonymous Anonymous said...

To Teresa from 4/23/2009:

My wife broke out with severe hives right after embryo transfer (IVF) and she almost gave up on the pregnancy a couple of days ago because the rash and itch was so bad she didn't sleep for a whole week.

We saw a dermotologist and allergist and neither knows what it was except that she had an allergic reaction. At first we thought she was allergic to the progesterone shots and suppositories so we stopped it. Now the hives are starting to subside but wife is starting to bleed a little so we may have to start progesterone again (maybe even increase the dosage because of the bleeding?)

Anyway, last night it dawned on me that wife could have had an allergic reaction to the low dose aspirin she was taking daily to prevent possible blood clot from the progesterone although she has never had any allergy to aspirin/nsaids before. A web site said that 67% of drug reactions could be attributed to aspirin and it could be triggered more easily under certain conditions (pregnancy?). So I would like to ask everyone who had severe hives durng IVF if you also took aspirin during the treatment?

5/03/2009 5:02 PM

 
Blogger Leslie said...

Dear Anon, I know I'm not Teresa,
but wanted to comment just the same.
Anything is possible for allergic reactions. You can be fine with shell fish one night and severely allergic the next. So, allergies are not at all cut and dried.
Did the docs say anything about using antihystamines or pred to counteract the reaction?
I don't know if they are contraindicated while attempting IVF, but it's worth talking to the OB about.
Good luck and let me know how it goes.
Leslie

5/03/2009 6:24 PM

 
Anonymous Anonymous said...

Thanks Leslie,



Wife first took Benadryl then switched to Zurtec (allergist approved it), but both did little to alleviate the swelling and itching. Since the symptoms occurred right after wife starting aspirin and Progesterone supporities, the culprit should be one of them and I sure hope it's not Progesterone since it's needed for wife maintaining the pregnancy (fertility doctor said so). So back to my question, did anyone take aspirin along with Progesterone as part of the IVF?

5/03/2009 6:47 PM

 
Blogger KristyM14 said...

This site has been really helpful for me. I've been suffering with eczema for about a year or two now and I've tried to pinpoint a certain food that causes the eczema but had no luck. Finally, I've realized that it happens every month right before my period and lasts a few days then goes away until the following month. I was on birth control pills from age 18 until age 22 (I'm now 25). I've done some research, (my dermatologist was no help at all) and I've diagnosed myself with autoimmune progesterone dermatitis. I still have a lot of research I want to do on this, but as for now I am worried that I may not be able to become pregnant in the future. My aunt was unable to get pregnant and I believe it was due to pregesterone levels (I know she also had an eczema problem). If anyone has any info that would be greatly appreciated.

5/13/2009 9:43 PM

 
Blogger Leslie said...

Hi Kristy - I hope someone answers your questions.
As for your dermotologist - doctors are still in the dark on this. Please don't worry about the pregnancy issues yet. I can't speak from personal experience, but usually when you relax, it has a far better chance of happening.
What you're experiencing isn't truly excema, so might respond to meds other than excema meds.
Try a few different things - antihystamines a day or two before the symptoms usually start, until the day after they usually end. I use benadryl at night, but you can try any of them. Remember they don't all act the same, so you may have to try a couple of different ones before you hit the right one.
And you can try an OTC steroidal cream, as well as benadryl cream.
You can also ask your doc about Singulair. I'm wondering if that would stop the process before it started.
Please stay in touch.
Leslie

5/13/2009 10:07 PM

 
Blogger Kelly said...

Hi,
I came across this blog while searching google for answers to my problems.
No doctor will listen as mine is not severe, they just tell me I have psoriasis, or some other skin condition. When I started taking the pill at 16, I started getting redy itchy skin and hives on my elbows, knees and some parts of my fingers. The dr. told me I had psoriasis and that was that. I stopped taking the pill and noticed everything went away, until I got my period. Then I get the hives again. I then got pregnant with my first daughter at 23, and got the hives again. It isn't severe, but I'd like to know whats causing this? Does it sound like autoimmune progesterone dermatitis? because doctors won't listen.

6/03/2009 8:27 PM

 
Blogger Leslie said...

Hi Kelly.

From what I've read, the dermatitis doesn't have the hives - just has the itching, scaling, red skin.

So it sounds more like the "anaphylactoid" reaction caused by your own hormones. Most likely the progesterone.

There isn't very much you can do about it - sorry to say - except work to control the symptoms. Since you are a milder case - and be glad! - it should improve with something like benadryl or another antihystamine. You can even try using the benadryl topical ointment - I've found it to help me a lot.

I've also found that mine has subsided with time, after having stopped using the Nuvaring. Hopefully, the same will be for you. There's just no real way to tell.

Since it's not really an allergic reaction, but more of a mob mentality ruled by rumor - one cell reacts for some strange reason, and the surrounding cells get the signal to react as well, and it cascades from there - it's difficult to work with. Nothing really causes it other than the hormones, so an external trigger won't be found - like drinking milk making your asthma kick up.

Work on controlling your symptoms by yourself. If your doctors don't listen now, they won't listen later. All I can suggest is read the other blog posts about this, print them out and take them to your doc. Document when you itch, and how much you itch to prove there is a pattern. It's the only way they might listen.

Good luck and let me know!

Leslie

6/03/2009 8:36 PM

 
Anonymous Anonymous said...

One thing is certain, as with other problems regarding women's health, it takes a back burner for awhile. I have had cyclic hives for 12 years, I'm sure I've bought numerous vacation homes for my dermatologist. I went to a gynecologist the other day, and he actually mentioned a possible link between my progesterone and hives. I have, on more than one occaision, mentioned the correlation of hive outbreaks to my dermatologist. Odd how that worked out! I'll be taking a topical sensitivity test for this- at my gynecologists office- in a few weeks. You have to wonder just how many women have been putting up with this for as long as I have- 12 years- when the cause could be as simple as this! I won't know if I truly have a progesterone allergy until early July, when I take the test, but I'm relieved that someone finally came up with this as a possible cause.

6/17/2009 1:33 PM

 
Blogger Leslie said...

Hey Anon,

I hope the test comes back positive. Just know it may not. BUT - you have 12 years of proof. And since there isn't much that can be done other than treat the symptoms, you can do that without an arrogant doc's diagnosis.

I'd love to hear back about how the test goes. Please let me know if you can.
Leslie

6/17/2009 8:13 PM

 
Anonymous Anonymous said...

My name is Pam. I am undergoing my 6th round of IVF. We had one baby from the 5th round. Thankfully, I am pregnant again but after 2 weeks on the injections of progesterone in olive oil, I broke out in a rash, itching all over. Yesterday the doctor switched me from an injection to Crinone, a vaginal suppository, and prometrium, a progesterone pill. I've been on benedryl for the last 48 hours, but just woke up and am itching like a madwoman again. As for the man asking about baby aspirin, my doctor did not have me take it. I'm now fearing I am allergic to the progesterone, but need it for the pregnancy. Will discuss with my doctor.

6/20/2009 5:59 AM

 
Blogger Leslie said...

Dear Pam - blessed and cursed at the same time. Wow. I'm thrilled you have 1 child and are expecting another. That's wonderful!
From what I've read, benadryl will not harm the fetus, so just keep taking it.
AND - if you get the liquid children's benadryl, you can really work on the dosage. If a 1/4 teaspoon keeps you from itching, then why take a full teaspoon or even 2 teaspoons?
You can try a benadryl cream on the spots that are itching - it may calm them down - it has for me.
Please let me know how it goes, OK?
Leslie

6/20/2009 9:00 AM

 
Blogger Leslie said...

Hi Leslie,
funny my name is Leslie and I'm from NY also. Anyway, I was diagnosed with APD about a year ago. I've had this 3.5 years now and had a heck of a time getting diagnosed. I didn't initially make the connection of my outbreaks with my period until about a year into it. I started breaking out after I stopped taking birth control pills. I was on the pill for 9 years. I used to only get this red rash on my arms and legs and it didn't itch at all but it felt very tender to touch.. almost like bruises. Every month is different in severity. For almost a whole year the rash was mild. Some months I'll break out really bad and will get swollen ankles too. This month I broke out all over my body and it itched a little. Once in a blue I'll break out twice in a month. My cycle is more like a 45 day instead of 28-30. I'm really bummed out because I'm just turning 30, married with no children. It seems the only treatment is to take meds that will stop ovulation or ovary removal.. menopause in other words. I'm too young for that. I'm also worried about having children. I've read that it can become worse with possible miscarriage or it can go into remission. I've tried taking benadryl and zyrtec with no results although I onnly took a standard dose of benadryl. I have to ask my hepatologist if it's safe for me to up my dose and see if it helps. I have autoimmune hepatitis as well. I believe APD is underdiagnosed. Most drs have never heard of it and there is no medical literature on it. There needs to be more awareness of this disease. I'm sure if this were put on tv people would come out in droves. How is your fight against this? are you taking meds? how old are you?

7/28/2009 12:30 PM

 
Blogger Leslie said...

Leslie~ Hello!
Sorry it took me a while to respond.
Standard dose - 25 or 50 mg of benadryl? And for how long did you take it?
Since the mechanism is more one of "rumor" than an actual allergic reaction, it doesn't always respond to antihystamines. That's why I'm wondering if it would respond better to Singulair or other lukotriene inhibitors (if there are any). There is some official material on this, but not from the US always, so US doctors don't believe it. If it isn't double blind or within their 'accepted' standards of research, it's bunk.
I'm 43. No kids. Meds are benadryl 50 mg daily, with some affect, but I still have itching and sometimes hives. My doc believes me, so I'm lucky.
And yes, I believe you - that this would be recognized if they put the word out.
I'm going to transfer all of what I have to a new blog just for this and hopefully will get more attention. We can hope!
Leslie

7/29/2009 10:18 PM

 
Anonymous Tari Harris Furey said...

Success after APD/Anaphylaxis/Death

I had APD for 4 years. I am 41. I have 3 daughters. Took birth control before kids and progesterone during last pregnancy. After last pregnancy, I had a tubal ligation. I have no other medical conditions. We thought initial symptoms were flu because they occurred during winter months. They progressed. After A LOT of documentation of episodes that I tracked on Excel, my husband (eye doctor), figured out there was a cyclical nature.

I went through allergists, oncologists, dermatologists, gastrointerologists, obstetricians and the funniest part is that my hubby figures it out! An eye doctor! LOL. Anyway, we started "googling" and found APD mainly from european medical journals.

Long story made short - my symptoms were so severe I came within inches of death 4 times. The final time came after a 3 mile run when an episode commenced. I took my meds, Xyzal, Zyflo and Singulair and waited. The episode seemed to subside when I was "punched in the gut". I collapsed and blacked out. I regained consciousness enough to dial 911. EMTs came to house (I don't remember much of it) and thankfully they listened to neighbors saying this is her anaphylactic allergy episode. Thankfully, again, the EMT lady listened and injected me with epinephren during the ambulance ride to the hospital. I had no Blood Pressure and no pulse. I had turned blue. Oxygen levels were below 90% and falling.

This is a SERIOUS condition and believe me, it's not in your head! It's really happening. Unfortunately, medications, such as birth control and allergy medicines, that help mask the symptoms muck up the waters in determining the initial cause of the symptoms.

Ultimately after recovering from that episode, I had short term memory loss and had difficulties recalling words and had damage to the language part of the brain due to lack of oxygen. Nonetheless, the body has an UNBELIEVABLE ability to heal itself. I am fully recovered today.

In my case, I opted for a complete hysterectomy due to the severity of my allergy. For 4 years, I was in a constant state of fog, allergy mess and confusion. Today, I am ALIVE! I was dead April 3, 2009. After that date, I celebrated another birthday and am still kickin' it! :)

3/13/2010 9:31 AM

 
Blogger Mrs. LeBlanc said...

Just two days before the onset of my first menses, I started wheezing and sneezing, so bad I could barely breathe. I never had an allergy TO ANYTHING in my life. I eventually went to allergy testing as I would miss school as my symptoms were so severe. The allergist called me one in a million, I was allergic to my period, and that BC pills would help...OH NO he was wrong...that was by far worse!!! Needless to say, I have a progesterone allergy, thank heavens for late onset PCOS I no longer suffer every twenty eight days for 6 days straight. They wanted to treat the PCOS with progesterone, it cause bloating, pressure swelling in legs, arms, and face, severe allergy symptoms: sneezing, breathing difficulties, and the like. The Gyno thought I was faking despite my begging and pleading for removal of the medication and seeing firsthand the severe symptoms. He told me to lose weight and it would all be better. He dropped me as a patient saying that would not follow his course of medical advice...I still need the hysterectomy...but for him it was not an option, I was willing, but he sadly was not.

I tried singulair and love it, but I still will not take progesterone as Singular only assisted with the Asthma symptoms and not the other side effects of progesterone. I am glad to see I am not alone, I am not crazy like the Gyno said...and I am glad you have your life back. Someday, I will get mine back too! :o)

4/09/2010 4:27 PM

 
Anonymous Anonymous said...

Wow, so I;n not crazy after all! After suddenly breaking out in severe rashes and hives at 53 years of age, I had to diagnose myself through trial and error.. I have been on Estrogen, Progesterone and Testosterone bio-identical creams for 3 years now, but now any application of the Progesterone creme causes severe rashes! I have tried taking it via troche under my lip and pills but the reactions are the same. I am either nearing menopause or going thru it and will have to subsist on no progesterone, I guess, tho I don't feel as well as I did when on all three hormones.. anyone else out there with this issue? Any suggestions! My docs have no idea.... Duh

5/11/2010 5:59 PM

 
Blogger Leslie said...

Dear Anon,
You're not crazy! It's nice to know, isn't it?
You can try benadryl or other allergy meds to reduce your symptoms, but at some point, they could become life threatening. I'm not sure it's worth it.
I'd suggest going to a homeopath. While a homeopath will insist you get off all meds and do their therapies, just listen to what they have to say. It might prove valuable to you.
You might also try to find an endocrinologist to at least speak with about this. They aren't easy to find and are even harder to get an appointment with, but might prove vital to an adequate answer.
Good luck and keep me posted!
Leslie

5/11/2010 9:18 PM

 
Anonymous Anonymous said...

Wow guys, I am amazed that physicians don't believe that progesterone is a potent hormone. I had many go rounds with it to normalize periods after I stopped the pill at age 28. When I began perimenopause at 41 or so, I was put on unopposed progesterone again. No traditional "allergy" symptoms (I have enough of those from the environment, or so I thought), but I felt like jumping off a cliff from depression and finally had to quit. The coup de grace? I was diagnosed with breast ca at age 42. It was not estrogen sensitive, but it sure was progesterone sensitive. I feel that we little women are wee guinea pigs. I'm still alive, but with lots of issues. Luck to all. And thanks, L. - S

5/13/2010 6:10 PM

 
Anonymous Anonymous said...

Hi, my name is Nicki and I'm 20. Thank goodness I'm not alone! NuvaRing was my first birth control and I was on consistantly on it for almost a year and a half. I never experienced any kind of severe craps or water weight before hand, but while on the Ring it was horrible. When I decided to stop taking it, I immediately started having reactions monthly when I ovulated. It progressively got worse every month. The doctors knew I was going through anaphylaxis every month, but they were convinced it was some kind of food. Finally I went to a Reproductive Endocrinologist and even though he couldn't test me specifically for a progesterone allergy, he tested me for so many other things that progesterone was the only thing left. Now the solution he has me on, is to take active birth control pills every day. I'm on one called Kelnor. I've been doing this for about 5 months and so far no more reactions, but I'm concerned about the long term effects of this. The doctor says its completely healthy to stay on active pills, but if I ever forget a day I start bleeding and have severe abdominal pain. Something tells me thats not good. Is there very many options for me to have kids? Do other women have problems getting pregnant when they are allergic to progesterone? The only thing my doc would tell me was that pregnancy will either cure me or make deathly ill and he didn;t know which. Should I just save myself the time and money and familiarize myself with adoption? What do you think?

5/14/2010 5:13 PM

 
Blogger Leslie said...

Hey Nicki,
Leslie here.
If you're only 20, you have options other than adoption.
Personally, I'd stop all chemical forms of birth control for a couple of years. I *know* this makes for a real lifestyle change, and I'm sorry. But if you truly want a family down the road with the fewest complications, that would be the best option.
Since you are able to be on a birth control with no reactions, you're lucky! But if you start having reactions, you may run out of luck.
You can take benadryl (the best anti hystamine for anaphylaxis) to help you get through the reactive times, and singulair may help since it deal with allergic reactions differently.
It's a matter of having a doc believe you and willing to work with you.
But I do think you'll be able to have kids naturally.
Keep in touch!

5/14/2010 6:14 PM

 
Anonymous Emma David said...

Torture, hell and self harming is now on my list. I have been to doctors, psychiatrists and dermatologists. I have been diagnosed with pompholyx. Hands and soles of feet. My dermatologist said I was just one of those unfortunate people. I don't and won't accept this. It is so obvious now that I have this disorder. I have suffered for years. It is getting worse and my doctors have put it down to my stress. I have gone through divorce and such. I never believed this was the cause. I have started noting that it is nearly nothing for two weeks and then goes absolutely wild for two weeks and as soon as my period starts it is heaven as it drops down to nearly nothing. Then the vicious cycle starts again. I am on 60mg prozac every day. Two different anti histamine and when the itching bad these don't work. I have taken to trying to cut my feet to release the itching, this is insane and I am now going to get to the doctors with this new evidence (and hope) found. I am truly grateful for your site and hope that my doctor will read this info I have printed and actually do something to help me. Emma 07854 424 364

4/09/2011 3:36 AM

 
Anonymous Melody said...

Hello, I have had angio endema for 42 years. I found out that I am allergic to my progestrone. I had body swelling every month. It varied every month to different parts of my body. I was on an allergy cocktail of seven pills a day. I took prednisone and bendryl for 1 1/2 years. I realized what was wrong with me from watching Medical Mysteries on TLC. I was tested, it was positive and my allergist called my GYN. My GYN and I spoke and she gives me a Lupron shot once a month. So far the shot is slowly reducing my break outs and my period has stopped.

5/04/2011 1:01 AM

 
Blogger Stacey said...

Hi all, my comment is for Leslie, not the blogger, but a fellow APD female who commented on 7/28/2009 12:30 PM I too am 29 and turning 30 next month and I am trying to get pregnant just like Leslie was in 2009. I am battling hives for 6 months that randomly appear throughout the months but turn severe the week before my period. I am almost positive I have APD (since docs can't diagnose anything besides "an allergic reaction to something") and I've had irregular cycles and been on contraceptives for 11 years. I am now married 2 years and we want to have a baby so we're considering seeing a specialist. I would love to know what happened with Leslie and if she was able to have a baby?

6/30/2011 2:21 PM

 
Blogger becca1235 said...

I would like to give all of you my story. Six weeks after my son was born I had the mirena iud inserted at my ob/gyn. A few days after it was placed I developed yeast infection symptoms and was at that point already slightly concerned since I had never had one before. My doctor prescribed a pill and after several days with no change he put me on microgel which seemed to help. A week and two days after the mirena was placed I woke up with a weird rash in the middle of my palms that were small clear fluid filled bumps that ITCHED so badly. I thought I had come in contact with something took some benadryl and headed to work. By that afternoon the itchy horrible rash had spread to most of my palms and up my arms. I left work and headed to my moms so she could help me with my son. Let's just say I will never forget the next four days. The rash that was on my hands spread over my entire body by the next day and all I could do was take 50mg of benadryl every 4 hrs to help with the itching and burning. That next Monday morning I went in to my gyn and told him to take it out! He was in shock at my condition and agreed but said that there was no way it was the device. Three days later my mysterious rash was almost gone. I thought I was cured. Yeah right. Two and a half years later I have different levels of the reaction during my menstrual cycle. I am just now getting them to believe that I have something very wrong with my hormones. Even though I would never wish this on anyone I am so glad that I have other people that know it is not contact dermatitis. I will try and let y'all know what treatment I receive. It hopefully will come to an end soon and I will be free of this terrible reaction that has caused problems with not only my skin but mood swings, hoarseness, headache, and sex drive. I am always grateful though that I have something that is not life threatening and try to remind myself of that each month. My husband and I hope for results soon.

9/21/2011 9:31 PM

 
Anonymous gaines67 said...

Becca:
Sure sounds like you have APD to me. I am newly diagnosed and have been suffering with some level of APD for 13 years. The last 8 have been the worst. I had a similar reaction to being taken off BC and then being put back on them. I had something change in my body when I was pregnant with my son 13 years ago. Developed what I thought were severe allergies with oral hives that affected me year round and the start of some minor vaginal symptoms. My allergist frankly could not explain why I was having such reactions. I had taken BC since I was 18 until I was 39. (minus my 2 pregnancies) When I went off BC I began to have vaginal symptoms that resembled a urinary tract infection & was coupled with an intense sense of vaginal itching. After a month or two, I noticed that I was having a vaginal hive occur in the same location as the itch and also made the connection that these events were occurring when I was ovulating. I told ALL my doctors that is was linked to my hormones but no one made the connection. Fast forward 7 years replacement of several new doctors and admittance into a pelvic pain clinic at a major Medical Center. I have had no improvement in my symptoms regardless of treatment. I am bumped up to one of the head doctors. They ask when the symptoms first occurred? I state, when I was taken off BC pills. Solution, let's put you back on and see if you have any improvements. Well, the opposite happens. My oral allergies with daily hives occurring 5-7 times a days were back with a vengeance !! My vaginal state slipped from one week a month of painful urination and intercourse to the inability of having intercourse. The "wheels came off the bus" as they say. I knew that what was occurring was tied to my hormones, but none of my doctors had ever heard, or treated anyone with this, so I went undetected. I was labeled with Vulvodynia. After much research on my end, I pressed for a vaginal biopsy of the affected tissue where the hive appeared years before. The biopsy revealed inflammation in the layers of tissue. One of the possible reasons listed was some type of contact dermatitis. I literally put "hormones & contact dermatitis" into google and APD appeared. I basically was poisoning myself daily. While my symptoms are different from other women, there were too many similarities to ignore. I had myself tested this past June and within 10 minutes, I had a positive reaction. I am still in the throws of trying to treat my symptoms but am looking at a full hysterectomy. Wish the best of luck to you.

10/28/2011 12:48 PM

 
Anonymous KMK said...

OMG, thank you ladies!
My swelling started out of the blue the year I turned 40. I have confused emergency dept.'s and many Doctors in the last 5 years (I'm now 45). My husband and I tried to conceive naturally the time I turned 35 until I turned 41 (I lived in a small village far from fertility Dr.'s). As soon as we moved to the city I began (42 years old) started Fertility treatment and have had 3 IVF attempts. Throughout the entire IVF struggles the allergy has loomed. Generally I get the allergy (angiodema only) once/month anywhere from 3 days before a period to the week of a period. I've actually had Dr's tell me it's in my head but thankfully I've had some brilliant Dr.'s lately who really care. I'm frightened of aniphilaxis because tongue and throat swelling is commen. The very worst "week" I've had was when I started a bcp with estrogen & progesterone in it - the next day I started feeling extremely anxious about, well, life and then the swelling began. Each day there was a new & even uglier swelling on my face. Eye, forehead, lips, throat ...
When I ceased the pill the swelling went away - I knew it was the pill but Dr's wouldn't believe it. Thank goodness their listening now. Is it a perimenipause thing also do you think?

3/24/2012 10:46 PM

 
Blogger Leslie said...

It could easily be part of perimenopause, but that isn't the cause. the cause is most likely becoming allergic to the synthetic forms you've ingested off and on through the years.

Please consider taking benadryl when you know the swelling is due - even if it's only a half a pill (12.5 mg). And, if it comes on unexpectedly, take a half pill as soon as you notice and add to it as needed, until the symptoms are controlled.

Good luck KMK!

3/25/2012 7:26 PM

 
Anonymous Anonymous said...

I went on and off birth control in my early 20s. Nuvaring caused facial discoloration from sun exposure. But I'm realizing a correlation now with a sudden onset of upper respiratory allergies. I remember reacting for the first time to cats I grew up, with upon visiting my parents. I eventually switched to Mirena for low dosage/low incidence of conception. My allergies progressively worsened over the following five years, steadily and intensely. I got to the point where there didn't even need to be triggers, though pollen, animals, mold, woodsmoke, hops and dust all made it worse. It took up to 2 allegra a day to be functional, and no allegra meant complete dysfunction. Recently, I decided to have mirena removed and my allergies cleared up almost instantly. Some triggers still make me sneeze, but nothing like before. Interestingly, I did have an allergic day or two about 10 days before menstruation, probably from my body's own hormone? I've also had recurring red, rashy swelling of the face for no apparent reason. Have you seen many cases of upper respiratory reactions. (itchy, watery eyes / intensely burning, stinging, itching nose and throat?) Sorry for all the brand names...

3/21/2013 11:11 PM

 
Blogger Annamarie Oconnor said...

Hello :) i also think i have this i have hyper-thyrodisim and at first thought it may have been thyroid related (not that the doc's would listen) ive been checked for the usual allergies with nothing i started to notice it always happened a week before my period calms down a little then flares right back up during ovulation but i get it on my arms neck and worst of all face very large red raised out itchy lumps which drive me crazy and also depresses me as i have a few auto-immune desease's i cant show my face in public it gets that bad im now 31 and i have never taken the pill or ever fell on pregnant ive had all the fertility tests where nothing was wrong all my hormones are normal but since the age of 16 ive never got pregnant ive told my doctor that its only when i have my periods but they dont listen i decided to google it and found APD which i really believe i have ive told my doc but hes never heard of it and told me to come back another day :( so keep going nowhere and in circles i also have recently been told i have breasts cyst which progesterone is meant to protect against if this helps can anyone relate or help me ive tried every steriod cream anti histamines and ive found that steroid tablets helps but started to have a bad reaction to the steroid tablets i couldnt sleep got paranoid and my heart kept having palpertaions please please help i dont know what to do nothing stops the itch or flair up luv annamarie xx

4/19/2013 7:17 AM

 
Blogger Annamarie Oconnor said...

If anyone can help in any way please do as my doctors arent very good he doesn't even know whhich department to send me to thanks x

4/19/2013 8:07 AM

 
Blogger Annamarie Oconnor said...

Also emma david i have often thought the same 9 yrs ive had this aswell as other immune problems and thyroid but no one helps im now on disability because im constantly poorley and also never sleep with thyroid disease and have often had the same thoughts of ending it as i cant live like this anymore not only do i get it on my arms neck cheast all over my face very very bad but also the odd ones on my legs belly and feet and fingers dont knw how long i can go like this for :( if u need to talk my email is leedslass1982@live.co.uk by the way is this a uk site ? X

4/20/2013 7:50 AM

 
Blogger Annamarie Oconnor said...

I also have post traumatic stress disorder so i have alot of problems too xx

4/20/2013 7:52 AM

 
Anonymous Leslie said...

Anna Marie
I'm so sorry you've had this many difficulties throughout your life.
First off - this is not a UK blog - I live in the US. But I would suggest you print the posts or the studies that are linked and show your doctors. I don't know if you live in a small town, but it might be time to see a specialist in a larger city if you can possibly manage to. I have found that by writing to them first, they are much more likely to assist and set up an appointment for you. Look for an endocrinologist and when you write, work on making the letter as well written as you possibly can - at least 3 drafts. They won't take you seriously if it's written as you have posted here.
And if nothing else, find help for the PTSD. There are techniques now to help reduce the symptoms. Do a search on books for reducing PTSD symptoms.

4/20/2013 9:35 AM

 
Anonymous Anonymous said...

I have suffered with chronic urticaria and related stomach problems for about the last 5/6 years. To the point where it became a disability - I couldn't walk or stand because the soles of my feet would swell up so badly I couldn't use them again for a day. I've been treated for everything from scabies, to acid reflux. And just today, I've realised that I've got a progesterone allergy.

Linked to oral contraceptives. I'm absolutely sure of it. I discovered relatively recently that if I stopped taking the oral contraceptives for a few months, it would all go away. I'm sure this has caused my skin issues. I look forward to trying to find a way around this and an end to not ebing able to ride a bike, or sit on a bench. Now to make my Dr believe my diagnosis...thank you for your forum.

12/09/2013 11:48 AM

 
Anonymous Anonymous said...

After years of torture and increasingly worse symptoms, I am beginning to think I have some type of allergy or autoimmune response to progesterone. During my pregnancies I would break out in the hive like rash. When I am not pregnant, I have autoimmune like flares that coincide with my cycle. My PMS has become intolerable. A week to two weeks before my period I feel like I have the flu. Swollen and sore lymph-nodes, sore throat, headache, debilitating fatigue, anxiety, hot flashes and low grade fever. I have gotten to the point where I just cry I am so sick. As a single mom to three kids under 10, I cannot afford to have the flu two weeks out of every month. It's finding someone to help me that seems impossible.

6/25/2014 12:36 PM

 
Blogger Leslie said...

Dear Anon from 6/25/14 - It doesn't sound as if it is all progesterone, but it could certainly be a trigger for even more inflammatory stuff.

If you are on hormone birth control, get off it. That should help reduce your symptoms, even just a little.

Second, stop eating soy and anything with a larger amount of soy in it. That should also help. This will most likely include fabric softeners, candles and some air fresheners.

3 - Buy some OTC antihistamine and start taking it regularly. It doesn't have to be benadryl (that's what I happen to use), so you have many choices. And be willing to play with them to see what works the best for you. One may have no affect and another may be like magic.

4 - show your doctor (or the childrens pediatrician) the studies outlined on this blog. They may have no answers for you, but having someone believe you is very important.

Good luck

6/25/2014 3:51 PM

 

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