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

Tuesday, September 26, 2006

An Answer To 1 Question

Every 5 weeks, almost to the day, I got "anaphylactoid" symptoms. What WILL the medical community think up next for terminology?!

My doc thinks I'm crazy, but the first one brought about an ER visit. No airway involvement, but my body was pretty swollen and ITCHING. Ever since, I've had varying degrees of symptoms, but never that severe.

Well, I started itching tonight. I've become used to it. My sister was looking at me, so I went and took my starter dose of benadryl and zantac. Sounds stupid, but stomach acid is triggered by a hystamine receptor. H2 to be precise. Allergies are H1 receptors. So - both get a kick in the pants when allergies rear their ugly heads. Knock both down with the appropriate meds and life is much better.

Well, I decided to look around. After a couple of different wordings, I came up with one that worked and found this:

Summary Statements
Unexplained episodes of anaphylaxis may be caused by unusual reactivity to progesterone. Anaphylactic symptoms tend to be premenstrual but may occur anytime during the menstrual cycle. [this part makes sense for me because I'm perimenopausal.] In one report, lactation caused complete remission of symptoms. The pathogenesis of this disorder is unknown, but laboratory studies have shown that progesterone may either induce histamine release from basophils directly or make mast cells more susceptible to other mast cell degranulators. Treatment options include a leutinizing hormone-releasing hormone (LHRH) agonist analog (e.g., Naferelin) or oophorectomy in particularly resistant cases.
A differential consideration that may be confused with progesterone-induced anaphylaxis is catemenial anaphylaxis, which is not related to progesterone reactivity. Anaphylactic symptoms occur during menses, and full recovery after oophorectomy has been reported.
Among the causes of recurrent anaphylaxis in females is an uncommon syndrome caused by hyperreactivity to progesterone. It should be suspected in any female who is menstruating or pregnant and experiencing unexplained recurrent episodes of anaphylaxis. Although the anaphylactic episode tends to be premenstrual, it may occur anytime during the menstrual cycle.
This syndrome was first recognized in the evaluation of a patient who had unexplained recurrent anaphylaxis with total remission during lactation.
1 When the patient became pregnant, the frequency and severity of the attacks became worse. After delivery and the institution of breast feeding, she had complete cessation of the attacks. When lactation stopped and her menstrual cycle resumed, this patient had a recurrence of severe anaphylaxis, including laryngeal edema.
As part of her subsequent evaluation, she was provoked with both progesterone and luteinizing hormone-releasing hormone (LHRH), both of which induced anaphylactic events. Progesterone was suspected as the inciting agent because provocation with follicle-secreting hormone (FSH), LH, and estrogen were uneventful. She was treated with a long-acting analog of LHRH, which competes with LHRH at a receptor level in the pituitary gland. Treatment with an LHRH analog causes the pituitary gland to become unresponsive to endogenous LHRH, with subsequent reduction in the secretion of FSH and (LH), which in turn leads to a reduction in estrogen and progesterone secretion. LHRH analog-treated patients cease menstruating and enter a temporary state of menopause. This agent caused a complete cessation of her attacks. After a period of time on an LHRH analog, this patient underwent an oophorectomy with sustained remission of her attacks, which was still the case at follow-up 5 years later.
To determine if other women with unexplained recurrent anaphylaxis might have progesterone-induced anaphylaxis, four women experiencing recurrent anaphylaxis were recruited into a 4-month, double-blind, placebo-controlled cross-over study of the effects of LHRH analog on their anaphylaxis.
2 All four women thought that their attacks occurred more frequently during the premenstrual portion of their menstrual cycle and that the attacks during these times were more severe. In preliminary screening of the patients, two of the women experienced systemic reactions after challenge with methylprogesterone and LHRH. Only one of the patients who experienced anaphylaxis after provocation had a positive skin test response to progesterone. These two women improved during treatment with an LHRH analog, whereas the other two women did not. Urinary histamine levels, which had been elevated before treatment, were reduced in the two responsive women but not in the unresponsive women. Both women who responded subsequently had an oophorectomy with complete remission of anaphylaxis.
Patients with idiopathic anaphylaxis that worsened during the luteal phase of the menstrual cycle did not release histamine after incubation with progesterone.
3 However, a subsequent report demonstrated significant progesterone-induced histamine release in a patient with documented anaphylaxis after challenge with both synthetic and natural progesterone products.
4 In addition, incubation of her basophils with progesterone appeared to augment anti-IgE induced histamine release.To confirm progesterone-induced anaphylaxis, a controlled challenge may be necessary. After insertion of an intravenous line and with life-saving equipment immediately accessible, the usual approach is to inject progressively 1, 2, 5, 10, 25, and 50 mg of progesterone in oil in the arm every 60 to 90 minutes while keeping the patient under close supervision. Reactions usually are restricted to urticaria and flushing, although systemic anaphylaxis can occur.Treatment choices include an LHRH analog or oophorectomy. Most of the patients treated with an LHRH analog had total remission of anaphylaxis. However, side effects such as loss of secondary sexual characteristics and osteopenia may limit long-term use of this agent.
One woman has been reported to have episodes of anaphylaxis only during menstruation (a low progesterone state), with full recovery after hysterectomy with oophorectomy.
5 This apparently represents a syndrome of catamenial anaphylaxis not caused by progesterone.

1. Meggs J, Pescovitz OH, Metcalfe DD, Loriaux DL, Cutler G, Kaliner M. Progesterone sensitivity as a cause of recurrent anaphylaxis. N Engl J Med 1984;311:1236-8.
2. Slater JE, Raphael G, Cutler GB, Loriaux DL, Meggs WJ, Kaliner M. Recurrent anaphylaxis in menstruating women: treatment with a leutinizing hormone releasing hormone agonist, a preliminary report. Obstet Gynecol 1987;70:542-6.
3. Slater JE, Kaliner M. Effects of sex hormones on basophil histamine release in recurrent idiopathic anaphylaxis. J Allergy Clin Immunol 1987;80:285-90.
4. Scinto J, Enrione M, Bernstein D, Bernstein IL. In vitro leukocyte histamine release to progesterone and pregnanediol in a patient with recurrent anaphylaxis associated with exogenous administration of progesterone. J Allergy Clin Immunol 1990;85:228.
5. Burstein M, Rubinow A, Shalit M. Cyclic anaphylaxis associated with menstruation. Ann Allergy 1991;66:36-8.

Basically, there are two cycle related anaphylaxis symdromes women can get. I don't know which I have and I don't care. It's just nice to know there's a reason and I'm not nuts. Well, at least not about this.


Anonymous Anonymous said...

I'd be interested in getting more information on this progesterone-induced anaphylaxis.
The Dr.'s I have seen (both the General Practitioners and the Hospital Emergency Dr's) think it's crazy and cannot exist.
I have the symptoms of the anaphylactoid reaction and have had worse reactions where I had to be intubated in the ICU, and it has taken 3 years to at least come up with some logical explanation for it myself.
Anything information you've got, or links to sites would be very helpful.


3/12/2008 3:16 PM

Anonymous Anonymous said...

Hey Kat! I am so sorry I didn't put the link to that study on the post. That's very unlike me.

Anyway, here's one on the skin part of the reaction (like what I had)

I think this is the original link:

And another article:

This might be of use when "discussing" this with your doc:
In the second report,2 the patient was a 35-year-old who had experienced previous attacks of urticaria for which no cause had been found. She too had normal complement levels during an attack and negative skinprick reactions to progestagens and oestrogens. She had a one-month trial of non-steroidal anti-inflammatory therapy with indomethacin but then elected to have a hysterectomy.
It's from the medical journal of Australia

I spoke with my PCP rather than my Gyno - and he fully believes me. WOW. So - Print out the stuff that seems to be YOU and present it to your doc. All too often people are blown off by their docs. Very rude.

I hope this helps.

Email me @ OneDndyLyon @ if you want to talk more...

3/12/2008 4:21 PM

Blogger cake_designer said...

Hey there,

Thanks for the links....quite interesting to read.
There is not much stuff to be found on this APD and progesterone-induced anaphylaxis, online.
The Dr.'s I have dealt with have diagnosed me with "idiopathic anaphylaxis"...which, I think, is an easy way of saying that they don't know what it is and are not going to further investigate.
Our Canadian healthcare system, although free, may not always be the best.

Something else I have questions on is this hormone hypersensitivity and pregnancy. The OBGYN I have seen recently just brushed me off, and said in all her research she has never heard of such a thing....Yes I agree how rude some are.

3/12/2008 7:54 PM

Blogger Leslie said...

Hey lady!

From what I've read, pregnancy and milk production actually help STOP the symptoms.

And while there isn't much on the subject, there is. The problem is, with all things female, docs don't listen. "Hysterical" cames from Hystero - womb. If we're upset, it's because we're a woman. Very hunter-gatherer in philosophy, but it's still there.

I know for me, indoor allergies make it worse. Some people, it's outdoor allergies. Some women, it just happens no matter what. When my upper arms start itching, it's time to take more benadryl.

My doc won't allow me to take any type of hormones - birth control. Period. Why risk it? And I'm fine with that.

I have found that since I completely omitted soy products, it isn't as bad either. Soy = phyto estrogens.

And like I said - my Gyno just looked at me. But my family doc believes me. Chart it if you have to. Mine lasts 3-4 days slowly building up and then retreating.

The itching starts, my asthma gets worse and my stomach just churns out the acids.

To answer about the pregnancy question, we'd have to really delve into the hormone production during each stage of pregnancy - ugh. Endocrinology. Hate it.

Just keep searching under different key terms you read in the different texts. My results started with the dermatitis, and continued on until I saw "anaphylactoid" - an android allergic to everything?! - but, that got me where I needed to be for information. And much of the info is from other countries - Australia, Ireland, etc.
You're NOT alone!

3/12/2008 8:26 PM

Blogger Amy said...

If anyone can help out there. I have experienced repeated anaphylactoid episodes. I have been through every allergy test and Dr.'s have found nothing. I am on Yasmin (birth control) and found this site with information on progesterone sensitivity. I approached my endocrinologist and he said "no way...not possible" since I am on bc it would suppress any progesterone. I am not so sure...every body is different and the timing of my reaction is when I go off my pill?? I would appreciate hearing from anyone who is on bc and experiencing progesterone sensitivity/reactions. Thanks..

4/05/2008 10:31 PM

Blogger Leslie said...

Hi Amy.
Give me a couple of days to do some research on Yasmin - it's new enough that I haven't looked. My doctor refuses to allow me on any BC since it disrupts, but doesn't eliminate progesterone production.
Since you're having reactions, PLEASE start marking them on a calendar. The more details you can tabulate, the better. I'm not a doctor, but I'm willing to help you figure it out.
I find that anything hormonal and anything dealing with the female sex has to be solved amongst ourselves first before any doctor (maile or female) will listen.
Send me your email address to OneDndyLyon @

4/05/2008 11:14 PM

Blogger Leslie said...

Hi Amy - did some quick research. All of the following is from Wikipedia...
You'll be interested in the primary ingredient in Yasmin:

ethinyl estradiol
Ethinylestradiol, also ethinyl estradiol (EE), is a derivative of estradiol. Ethinyl estradiol is orally bio-active and the estrogen in almost all modern formulations of combined oral contraceptive pills (the Pill). It is one of the most commonly used medications.

The compound is part of certain birth control formulations. Drospirenone differs from other synthetic progestins in that its pharmacological profile in preclinical studies shows it to be closer to the natural progesterone.

4/05/2008 11:27 PM

Anonymous Anonymous said...

I have spent my entire adult life, from onset of menses experiencing hives periodically at the time of my menses. As a teen, it was only red palms with red dots. Through my 20's, 30s and early 40's, it was random bouts of hives, once so bad I was in the ER. They never found a cause, just treated the symptoms. I did not experience this reaction every month, but it was when I was 44 that I realized it was when I had very heavy flow. I do not have APD, the hives come when my flow starts, not before. I have spent the last 13 months telling doc after doc that I am allergic to my menses. It has taken 13 months to get anyone to listen. They finally believe me. Just be persistent, and keep talking. The key; there are two kinds of allergic reactions - APD and catamenial anaphylaxis.

They first started to believe me when they inserted an IUD to stop the menses, and then the hives stopped. Until of course my menses broke through the IUD and voila, hives. Of note - I have had horrible pains my entire life before/during menses, and this IUD was a terrible idea. However, I am hyper sensitive to birth control hormones, so that wasn't an option.

I am now heading in to have a hysterectomy, as the bleeding/pain with the IUD is unbearable. IT has been a very long 13 months from start to finish.

10/18/2017 9:58 AM


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