'Veda' first contacted me a year ago about her severe face flushing flares*. She explained how she had been dealing with rosacea for two years at that point, and to which extend she had to accommodate her life to this awful condition. How she took clonidine with some success, but noticed over time that her severe flushing mainly happened in the 7 to 10 days before her period. After seeing a good doctor and after several years of suffering, Veda found out that her facial flushing and burning were triggered by progesterone hormones in her system. After she had an hysterectomy and her ovaries no longer produce progesterone.. her flushing has as good as stopped. She was diagnosed in the end with a rare condition called autoimmune progesterone dermatitis. Below she will tell her own story. Rare as the condition may be, we hope that this will perhaps help some women who may flush, flare and burn for the same reasons as Veda did. 
My Health Journey "In October of 2016 at the age of 46, I suddenly, out of nowhere, received a large red welt on my left cheek. I went to my GP a few days later and she asked me if I ever had chicken pox because she thought it was shingles. After receiving some medication, she also suggested I check in with my dermatologist. The derm said it wasn’t shingles, it was contact dermatitis in which she prescribed hydrocortisone. Although that burned, after a few days it took the swelling and inflammation down some. Over the next several months I had bouts of this inflamed “contact dermatitis” in the same location and kept visiting the derm who suggested I have a biopsy. In March of 2017 I finally broke down and had it done. The results came back as rosacea. I was given soolantra, metrogel and oracea, none of which helped (in fact made it worse). I was confused as how I suddenly developed this condition after all the years of not having any sort of signs. In May of 2017, it spread to my right cheek. I thought maybe I needed a second opinion so I saw another derm 100 miles away. She suggested VBeam Laser. I saw some improvement at first, however I continued to flare and it began to spread to my chin, nose and forehead (not all at once though). In addition, I was waking up every night with red, burning, painful skin. I would be up for hours and not get any sort of decent sleep. By the morning it would be better. Over time the bouts got worse, I was out of work for days not only with red inflamed skin but I also had GI issues and body aches (I felt like I had the flu) and then it would just go away. The redness and burning feeling also spread to my eyes. At this point I stopped wearing any kind of face makeup which I have been wearing for 30 years! I began having panic attacks and bouts of depression. I tried to “fix” this by changing my diet and skin care products and I avoided any potential triggers. I also began seeing an acupuncturist and natural doctors who told me it was my liver or candida etc. I took the supplements they suggested and nothing changed, in fact it got worse. Physically and mentally I was a wreck. I couldn’t go anywhere or see anybody and I was still having panic attacks. I think my biggest fear was having a terrible flush while out. My GP gave me every kind of test known to man but I was “normal”. I almost wanted something wrong with me so I knew where this condition came from. The person who was once very confident, was now a mental “mess” and a secluded hermit.
I went back to my GP who put me on Zoloft and propranolol. He also suggested I see a psychologist. I tried these avenues, as well as other medications but my situation was getting much worse. At this point, I stopped taking the birth control pill that I have taken for years to see if that would have any affect. All my doctors including my gynecologist said it couldn’t be that but I wanted to try. To my astonishment I wasn’t flushing at night anymore. I was thrilled! I thought I found the answer! However after a few months (once my body got back into a natural cycle), I began flushing terribly every 3 weeks. This time, it kept me out of work for weeks each time. It also continued with the GI issues and body aches. Now when I flared, my face felt like someone poured acid on it. That is how painful it was. I went back to my GP who suggested I see specialists as my condition seemed that it was not in the normal range for rosacea. I saw several specialists and each one said they are sure it was an underlying auto-immune disease but they weren’t sure what is was. I started keeping track of my cycles at this point. I found that my condition worsened 3 weeks into my cycle. I made an appointment with a new gynecologist who ordered hormone testing. Of course I went on a day when I looked and felt pretty good. The results were normal. Again I slumped into depression but I tried so hard not to give up. I decided to have another hormone test done but during a flare up. So I waited and like clock work I had a started flaring 3 weeks into my cycle. I went for a second test and I remember the nurse asking “why are you so red”. Ugh I thought, I just want to get out of here. But I had the test done and a few days later the results showed that my progesterone was high which means I was ovulating. I did some research and found a condition called “auto-immune progesterone dermatitis”. It is very rare and those who had it seemed to have similar skin conditions. Issues begin in the second half of their cycle. So I met with my gynecologist again and we spoke about options. There are medications out there that could help suppress ovulation but my insurance wouldn’t cover them. I did try the cheapest one I could afford which was $150 a month. Unfortunately it didn’t work and again I was severely depressed. I met with my doctor and spoke about a more extreme approach which was having a total hysterectomy. And because he would also be taking my ovaries I would most likely need estrogen. I am only 48 years old and most people would have needed time to think about this major decision. But since I was constantly in so much pain it was a no brainer. I scheduled my surgery for May 10, 2019. The surgery went very well and the outcome was a success. I have not flared in 15 weeks and counting! My skin is slowing healing and getting back to being semi-normal. I am feeling better and getting back into doing some of the things I used to do including going on vacation (we haven’t gone in 3 years). This has been an extremely hard struggle but I am sharing my story because I want to help other woman."
Veda during flushing flare ups
What is Autoimmune Progesterone DermatitisAutoimmune progesterone dermatitis is a rare allergic reaction to a woman's own progesterone hormones. These hormones are created in the female body in the last week(s) before menstruation starts. So during the second half of the menstrual cycle. This period is called the luteal phase. So us women go through this every month again and again. Women who suffer from this condition show a variety of symptoms and conditions as a result, including erythema multiforme, eczema, urticaria, angioedema, and progesterone-induced anaphylaxis. Other symptoms can be deep gyrate lesions, papulovesicular lesions, targetoid lesions. Symptoms usually occur three to ten days prior to the onset of menstrual flow and resolve 2 days into the menstruation. And going by L's case, flushing and redness of the face seems also a possible symptom that falls under the umbrella term of autoimmune progesterone dermatitis. There are examples, for instance of a 38-year old woman who experienced erythema multiforme and urticarial rash every week before her period started. First she was seen by an allergy specialist and dermatologists for evaluation. Allergy testing was done and was reported negative. The patient was placed on antihistamines for treatment, which she reported did not help her symptoms. Then the patient was told her symptoms were due to stress. Later doctors started to get a better idea of what could be going on. The patient reported that during pregnancy and while breast feeding that she did not have any episodes of a rash and/or hives. The patient also stated that she was on oral contraceptives for one year at age 23 where she noticed her symptoms decreased. Now she was treated with oral contraceptive pills and the symptoms went away. Doctors concluded that hers is a typical case of progesterone autoimmunity. The diagnosis is based on cyclic nature of the dermatitis. This differentiates the condition from other allergies or systemic diseases with skin manifestations. Once she started taking the pill, she no longer ovulated as a result and therefore had a decrease in progesterone secretion. Therefore her
symptoms went away. There are some disorders similar to autoimmune progesterone dermatitis. One in particular that should be considered when evaluating a patient is mastocytosis. Mastocytosis is a group of disorders characterized by excessive mast cell accumulation in one or multiple tissues. It is subdivided into two groups. One group is cutaneous mastocytosis which is limited to the skin. It can cause flushing and redness of the skin .The second group is systemic mastocytosis where mast cells infiltrate extracutaneous organs. The typical presentation for mastocytosis is pruritus, epigastric pain, nausea, vomiting, chronic diarrhea, and arthalgias. It can also present at neuropsychiatric changes such as irritability, depression, and mood liability. Systemic symptoms can occur in any form but the most common is flushing. The most dramatic symptom is anaphylaxis with syncope or even shock. However, the symptoms of mastocytosis are not cyclic.More information on auto-immune progesterone dermatitis:
https://www.aarda.org/diseaselist/
https://rarediseases.info.nih.gov/diseases/diseases-by-category/13/immune-system-diseases
Excerpts from Veda and my communication over the past year, and her slow discovery of what caused her severe face flushing and burning. Convo starts in August 2018"Hi Scarlet
I hope you don’t mind me emailing you. I was reading your blogs and I am going through the same thing except I got this terrible condition at 45 probably due to being pre-menopausal. I literally woke up with it one day on one side of my face. It has since migrated to the rest of my face and my neck and ears. I am receiving VBeam laser treatment but don’t really know if its helping. Also my skin feels really dry and I am getting awful flushes two to four weeks afterwards. I changed my diet (low carb, no dairy etc), Got a food sensitivity test done and avoid those foods I am allergic too, no alcohol, trying acupuncture for anxiety, seeing a psychologist for anxiety, etc etc. I can’t tolerate any of the topical meds. I currently use products from the Rosacea Treatment Clinic in Australia which are expensive. I am at my wits end and I have a GP who agreed to put me on 1 mg of clonidine however he wants me to take it once a day due to having low blood pressure. [..] I am currently on Zoloft too. Also I flush mainly when I sleep (if I sleep). I get up several times to put the air conditioning up or down or off and reposition the fan etc. [..] I cannot be in heat either. Sorry so long and I have so much to ask you but I won’t bombard you in this one email. Thanks for helping me out. Veda"
**"Hi Scarlet, I only had the dreadful condition for the last two years. They think it was caused by pre-menapause. I am 47. I never had any symptoms before until literally one day. Up until that day I was able to eat and drink what I wanted, although I have always been into fitness and ate healthy. I am struggling to find peace and have a “normal” life. [..] This condition has crushed my self-esteem. But I am trying. [..] I have a floor fan and sometimes I wake up with my face stinging like its irritated. I thought maybe the fan was too close or something. [..] I think I told you that I had my hormones checked a few weeks ago and the tests even showed my hormones are ok and that I am not going through menopause. I was shocked. [..] I have been off for two weeks due to a bad episode with a V-Beam laser treatment. I have had 6 so far and most were fine but the last one left me red and irritated in areas that the laser didn’t touch. I thought the V-Beam was helping to a point but now I am nervous to get anymore. I may wait a year and see what happens. I think I am done with laser for a while. So I have had bad flushing at night while I sleep and I feel the clonidine has helped in that respect. I just want to get to a point where I am semi-normal and can sleep the night and have some good decent days. Hope all is well with you. Veda"
**"Hi again!! The clonidine has been increased to every 8 hours and last night I was able to sleep during the night so I really hope it helps me. Regarding work, I have a lot of stress [..] the redness is embarrassing as it is on my cheeks, nose and chin. But its not so much that as I get patches of swelling which make me looked like I was punched. The pain is incredibly painful too as it feels like acid was poured on my face. I told this to my GP and he set me up to go to R. (strong hospital) as that is a large city and has more state of the art testing. He wants to test for auto-immune diseases. Because something is wrong I feel it. I had food testing done and eliminated any possible allergies. I eat organic clean food. I don't drink or smoke. I used to love wine too and I gave that up. But I changed every possible thing I can do and I am not even somewhat better. I know I have rosacea but it was caused by something and continues to fire up. I have friends to have mild rosacea and if they cut out gluten, or sugar or alcohol then they are fine. Nothing seems to help me. [..] - My GP said something interesting today. I have been on the pill for 20 years and was fine. Around when this started I started getting cystic acne and was switched to a different pill. 3 weeks after doing that I got rosacea. She wonders if I developed an allergic reaction to the pill. Have you heard of this? If so I'll stop it but I'm scared to wonder what will happen too. Veda"**"I just got back from seeing a new derm. My husband came with me and showed her the pics of the bad flushes. She said (and she is not the only one) that what I have seems extreme for rosacea especially me just getting it a year and a half ago. So she ordered a test (urine test) that I have to do for 24 hours. Fun fun. Then I have an appt with a huge hospital in the city of R. that deals with rheumatology and they are a teaching hospital so they use a lot of experimental drugs and such. I stopped the clonidine and the Pill (ugh) so I am determined to control this thing! I am really on no meds right now except trying doxy but oracea. I know it doesn’t work for everyone (and I read it made you worse) but I have to try it to see if it will keep the swelling down. I asked about the propranolol and they want me to wait until after the pee test. Its turned cold here (40 degrees F) so we have the heat on. I actually do better in the fall/winter. Why?? I have no idea.."
**"Hi there again. My doc wants me to be weened off of clonidine and then will consider another which I will mention the propranolol. I am sorry you are having a bad week too. I hope it gets better for you too. I have been home from work this week with the worst flush I have ever had. I kind of hope it was the clonidine because I just hope its not the new norm. Having this major painful flush every other week sucks. [..] I just started a probiotic. Just wondering because you see to be just as sensitive as I am. [..] I have been weaned off clonidine now and I do see a diff but I have also stopped the birth control pill. Hope you feel better. Veda."**"Hi Veda, oh that sounds like a proactive derm who takes your symptoms serious. That is great. I hope something comes out of the tests. Yeh it is extreme to flush this bad and the few people I know who have it too, all seem to balance on the edge of different possible diagnosis. For instance, one of the derms I see thinks I have a mast cell disorder, hence the violent flushing. I also know a bad flusher whoms doc says she must have erythromelalgia. I joined an EM facebook group on her suggestion and there are many more people there with extreme face flushing and burning! More on average than in our rosacea groups. However they tend to also have burning hands and feet. My hands do burn but that has been diagnosed as Raynaud's syndrome in hospital. But the division lines are blurry. But... at the end of the day they are labels and EM doctors also struggle to treat the facial burning and flushing, so we end up either way with a flushing problem that is hard to treat; both for dermatologists as well as for neurologists as well as for a rheumatologist, or a vascular specialist... OK, very curious what comes out of the tests. Yeh doxy/oracea is a good anti-inflammatory and works for many people with our skin issue so it is trial and error :)"
**"Hi Scarlet, well knock on wood, so far so good. My rosacea has settled and I have been sleeping at night. I would flush horribly at night with burning and pain and during the day when it wanted to come out like during stress. But its nice to get some sleep. I have been taking the propranolol but just at night as it makes me so very tired. My body hasn’t adjusted yet to it I think. [..] Yes I will let you know for sure what comes out of the tests. It is so depressing really going through all these tests too and then to find nothing wrong. I mean I don’t want to wish a disease upon myself but I want something causing it so I can try to fix it or at least make it better. My skin does better now, in the fall and winter. It does terrible in the summer and it was a hot one this year. My skin does not like forced air conditioning but it’s a necessary evil cause it doesn’t like the heat either. My skin does well in the natural cold but I do cover up in the deep winter when it gets down to 10 degrees and with the wind. [..] So my results came back and my doctor wants to do follow up testing. I did research before I spoke to the Doc and it looks like it could be a tumor on my adrenal glands or around there. Maybe but it gives off a lot of hormones and me taking the birth control pill adds added hormones so I’m wondering if all that made me flush horribly. Hmmm"
**"Hi Veda. Oh, that is worrying! I really hope there is another reason for the higher hormone blood levels. Have you managed to speak the doctor already at this point? I hope the doctor can soon give you some more certainty!"**"Hi there, I have a new derm (third one) and this one is proactive and wants to get to the bottom of my aggressive flushing. So she ordered these tests and now sent the results to my GP. I have an appt with him next week and I guess we will go from there. [..] I had a really bad flare up two weeks ago during my period as well. My two cheeks from my eyes to my jaw were covered including swelling, welt looking areas and severe burning. Took me out of work for a week. Now when you have a bad one do you feel like you have the flu? My body aches, I am so fatigued that all I do is lay around and because of the severe pain my doc gave me valium. It helped me sleep since I had a hard time doing that. My face looked like it had welts on it and was giving off major heat. My derm says that isn’t a normal case. Well as you know my tests came back with high adrenal hormones so they really think that is the issue so they are trying to get me into endocrinology. They called me and I have an appt in February 2019! ugh. My rheumatology appt is this Friday and is 3 hours away. I hope they can help me… Veda."
**"Hi Veda. Sounds like a thorough doctor.. I hope you are not very worried at this point? I really hope there is another explanation for your hormone imbalances.. Keep me posted and yes, it would be great if they went to the root of this flushing problem. I'm in the same boat still! Oh that sounds like a full (body) system response yes.. My face flushes often and I just feel hot, in pain and tired then. But after cooling for a while, things can go back to normal again. In the long run, a long and intense flare can make me very tired also, and I just go to bed with fan on usually then to sleep it off ideally... I know about the heat radiating face thing... Welts, could that be an allergic reaction? Have you ever had full allergy tests done? Have you already been tested perhaps for mastocytosis? And ANA blood levels and related blood work, to rule out auto-immune diseases? There are a lot of conditions that can cause flushing and burning of the face. My derm says my flushing is so severe that he suspects something else going on, on top. Mastocytosis (but that one is hard to diagnose) in my case or perhaps erythromelalgia as my hands are flushing and getting hot too lately.. It is a huge jigsaw puzzle, getting proper diagnoses.. Yes first suspect now is the adrenal hormone abnormality! Geez louise.... February?? That is such a long wait :( Are there waiting lists where you are? Or does the doc not think your levels are worrisome? Did your rheumatologist come up with anything new? Best wishes!"
**"So we drove to R. Friday morning during a snow storm! They were very thorough and spent an hour and a half with me and then took 7 vials of blood. We will see. The pain is all over my body…… in my bones as I told the doctor. The endocrinologist here cannot take me in until February and yes I am on a waiting list but my GP just put a referral into R. for Endo now and they said they could take me next month. We will see! [..] I just got back from a derm appt and I told her about the new flushings I’ve had and she really thinks my issue is coming from within. She is trying really hard to get me into an endocrinologist. I had another flush last night and my skin right now feels like someone took a piece of glass to it. I really hope they find the issue and it can be fixed at least to a point where I don’t flush as much. I do everything right, eating wise, meditation, I don’t drink alcohol, I stay away from sugar as much as I can but I love chocolate.. Stuff like that. And I still flush worse than anyone I know that has rosacea. Actually its not many people but the few I know have the normal flushing due to exercise, cold, food etc. its just sooooo frustrating. My sister in law was in town so she came down and I showed her what I look like and she said that it doesn't look like rosacea but looks like welts! I get so inflamed that my eyes get to the point of looking like they are closing. The inflamed parts are hot and red and then the rest of my face gets a "patchy" light red look to it. I really do look bad, to the point I can't work because I need to put ice packs on my face. This is getting worse for me and in just two years. I do have yet to see a new derm who specializes in lupus rashes, and I still have some tests they want me to do (one is a hormone test). I don't disagree this is rosacea but its an inflammation coming from somewhere else."**"Hi Veda. Glad you made it despite the horror weather! Really hope something tangible comes out of the blood work and good news that you can be seen earlier for the other out of whack hormone levels. Yeh I know all about the intense pain after and during a flush.. I hope your face has calmed down by now? Even touching my skin is painful at this stage.. Same for me... I do everything right on paper, and still.... We both need super thorough, out of the box thinking types of tests I feel to get to the bottom of this thing."
**"Hi Scarlet, My tests came back fine except for a few things that imply an autoimmune condition like lupus. But since not ALL the test were positive they say I don't have lupus. This process has been tiring. But more tests on the way! So I will keep you updated. They did mention to me about me trying plaquenil. I was reading your blog about it but I wanted to get an update opinion from you about it. Is it worth trying?
**"Hi Veda. ugh that sounds a bit like my own results :( Sort of positive ANA and inflammatory substances but not high enough or not precise enough to mean lupus. In a way its a positive that you don't have lupus, because that is a nasty condition that can spread to organs and even the heart. But on the other hand... something is not right with our bodies! And all that crazy flushing needs to be explained somehow. I see an immunologist mid January and will bring all my test results along and hopefully get another opinion or more tests... I will update you of course. Plaquenil can really help. It is a strong anti-inflammatory for the skin. I know several people with flushing and redness who are seeing big improvement with it. It has the downside of staying in your system very long (long half-life), so if you have side effects it can take 2 months or so until all is flushed from your system. I used it 3 different times but every time my eyes got very painful on it :( I did feel it made me more pale at some point. The eye side effect is rare though. I would say; definitely worth a try! They're not steroids so no long term risks about trying.
**"Hi Scarlet, I got home late last night from R. I finally have a light at the end of the tunnel. Based on my tests, my symptoms and history I have Erythromelalgia. The doctor prescribed gabapentin and pentoxifylline. And then he wants to work in plaquenil. Never heard of the first two but he says that my nerve endings are shot basically and I have severe burning pain from it. This is all new to me! I wanted to let you know.**"Hi Veda. Very curious how you will do on those meds!!! Gabapentin is a nerve pain med. Its also called neurontin (brand name). be aware that it has the very small possibility of causing blood vessel dilation (vasodilatation) as a side effect, but this is rare. Pentoxifylline is also a med to numb nerve pain. Plaquenil reduces inflammation in the skin. I wonder if you also need a med to reduce flushing. But doc probably wants to see first how you do on this combo? Exciting! Would you say that nerve pain is your worst symptom, and then flushing? or the other way around?"
**"Hi Scarlet, I would say yes, nerve pain is the worse. It feels like someone poured acid on my face. If I was just red without the pain I could cover it but with the intense pain AND swelling I cannot. Oh by the way, I went for blood tests the other day to check my hormones. I am 48 so everyone says to me “its your hormones causing the issues”. They called me yesterday and according to my tests my hormones are normal and I am NOT going through peri-menopause. I was shocked. So its not hormones driving this problem. Veda."
**"Hi Veda. Great that your hormones are fine. Yesss that is one less worry. Ok well you can always try and see how it goes? Good thing of meds like these is that they are well studied, safe and if you don't like what they do, you stop taking them and all should go back to normal. I would give it a try and just see it as another step towards improvement? EVEN if for whatever reason your skin doesn't respond well, even then because then you know that these two meds are not for you, and the doctor can probably suggest something else. Unfortunately it can take a good few med trials for some until something clicks and works a bit.... Yeh meds are never nice but no meds is also detrimental at this stage to your body, your skin, your blood vessels, your nerves.... Flushing like ours needs to be controlled in the end :("
**"Hi Scarlet, you're right about the meds. What we have needs to be controlled. I can see that the redness is becoming permanent too. So any VBeam I did is gone! Money out the window….. I think I will try one for one week then add the other. I don’t see the doctor for 4 weeks so I think that should be fine. If I flush then I know what it is. He claims that the meds are supposedly harmless. We will see!! Thanks for the idea!!**"Hi Veda. Yeh haha I have heard that one before too. These doctors mention often that meds have no side effects blabla, well tolerated. But when you flush at the drop of a hat and even from smelling someones perfume (me at least), there really is no saying and many meds can worsen the flushing actually... But some can also help :) Trial and error! I used to keep a small diary when I tested new meds. Made daily skin photos and just described the symptoms a bit. It becomes a big blur soon afterwards when too much time has passed. Fingers crossed."
**"Hi Scarlet, My rosacea isn't typical because one day I can have all the triggers in the world, food wise, and be fine. But stress and heat are the issues. Right now I am spraying my face and have ice packs wrapped in cloths on my face. It sucks! Oh I wanted to ask you about the med I am on, trental. It opens my capillaries. He said that should help if I have Erthromelagia. That shouldn't cause flushing right? Sorry your having issues too. Your pic looks painful too. This really sucks for us!
**"Hi Veda. I wonder indeed if this is something else than classic rosacea! Because a rosacea flushing flush usually lasts a few hours tops. Then cools down again. It is possible to have longer lasting redness (inflammation, background redness) though, but the intense pain.. yes it could be erythromelalgia or lupus even? Doc needs to be able to tell you. When do you think your test results come in? YES anything that dilates blood vessels is a no no for us, in principle. The issue with erythromelalgia is that the pain comes not just from the vessels excessively dilating, but also from them constricting. I know a girl with severe flushing who has erythromelalgia and she actually gets better from calcium channel blockers, which dilate blood vessels also and are top of the not to use list for rosacea flushing. In her case, they help keep her blood vessels stable. But with normal rosacea flushing there is no issue of constricting blood vessels and nerves (causing the typical white pale thing you sometimes see with cold fingers). All we usually need to do is prevent blood vessel dilation. So mildly constricting them is the way to go, I think. Not opening them up."
**"Hi Scarlet, sooooo, my gynecologist called and we discussed my test I had as soon as my rosacea came back really bad this last time. (so as soon as the symptoms came in, I went for a hormone test the same day). He said my progesterone was elevated and I was going through ovulation. So to make a long story short(er), he is putting me on a medication to suppress the progesterone. As soon as I feel my symptoms coming in, I take the pill until I get my period. It makes sense because it gets so much worse about 3 weeks into my cycle and gets better during my period. So I will try this. The strange this is I asked the doc so why now?? I have been on the pill for 20 years (getting more progesterone) and I was fine all those years until 2 years ago…. He just said “why does anyone get anything the way they do? Psoriasis for example when they never had it”. He is right. I guess I need to stop asking why why why. Veda."**"Hi Veda, Yes makes total sense! I think its a good move, on paper at least :) Progesterone is responsible for many women's rosacea flaring the week before the period starts. Progesterone stimulates the sweat glands and can cause acne, or heat rash and pruritic urticarial papules. Progesterone also prevents vasoconstriction by increasing levels of nitric oxide, which causes blood vessel dilation. It can also worsen inflammation. Perhaps you respond particularly bad to it? It is one thing I look forward to after menopause; progesterone will drop a lot then, but estrogen as well.. (which can help again with rosacea for some).
**"Hi Scarlet, I am ok and my guess is I will be until I go through ovulation again. I meet with my gynecologist again in April and I’m seriously thinking of having a hysterectomy. I have other issues too but if this is linked to progesterone then that made my decision a little easier. I am 48 so I think its time. Oh By the way, an allergist can test for a progesterone allergy. I made my appt for April 11th. This has to be it! Ugh. Had another bad flare."
**"Hi Veda. Fingers crossed!!! Very sorry you had another bad flare. Its very individual but for me, progesterone rise means more redness and flushing! In a normal cycle, the first 2 weeks have higher estrogen and low progesterone. Then after ovulation (so around day 14 normally) estrogen decreases and progesterone goes up. Especially the few days before your period starts (for some the entire week before) progesterone is high and rosacea flares can be worst for some women. Then once period starts, progesterone drops. Did you ever see a pattern yourself in this?"**"Hi Scarlet, yes I did see a pattern. Is there anything I can do? I was on the pill for several years and in the past few years things got worse (was flushing every day) but now that I am off it, it seems better and now I flush every 3 to 6 weeks. But that flare last a week now. How are you? Veda."
**"Hi Veda. I assume that on birth control you had progesterone in your system (synthetic one) all the time hence the possibility for your flushing every day?
**"Hi Scarlet, As mentioned my gyno put me on Ella to suppress ovulation but it hasn’t worked. My gyno told me to start the pill even sooner plus do the increase. Soon I will be on that morning after pill the whole month. LOL. But I met with my gyno today and he scheduled a total hysterectomy for me in May. I just want it taken care of. He actually said that it will be easier for everything to be controlled once the surgery is done, meaning I will have to go on estrogen pills (most likely) but that would be easier than trying to calculate my schedule now to make sure I take that pill before I ovulate.
**"Hi Veda. Wow, good news!!! YES I fully understand. You will then only have to worry about adding some estrogen. Your progesterone will be down big time then naturally right? Seems much less draining for your body than taking these strong morning after pills too long. Although taking extra estrogen has its risks too apparently (I read about statistical increased risk of cancers in the long run, not sure, your doctor will know about that). And May is already soon! Is it a big surgery? No key-hole one I reckon? I really hope that will solve the flushing flare ups."**"Hi Scarlet, I know I was very surprised he could get me in so soon. Yes it is a major surgery and I will be out of work for 6-8 weeks. I plan on still having the allergy testing done prior and I hope the outcome shows that I am basically allergic to the hormone; then my mind is surely made up. If not the doc did say that most of a woman’s issue with rashes comes from progesterone so I probably will still keep the appt. ;..'I forgot I see my Primary Doctor next Tuesday so I will wait to talk to him then and in the meantime stop the Gabapentin and see what happens. I took two yesterday and last night I only slept two hours because I had a burning flush. Not 100% sure it was from Gabapentin but I want to rule it out. Based on my cycle I should be in the doing better stage now. Ugh!"
**"Hi Veda. Yes attack it from all angles because knowledge is power. So by ruling out (or confirming) allergies you may have more pieces of the puzzle! And we'll go through menopause anyway, eventually. Fingers crossed it will all go well, Veda"
**"Hi Scarlet, Sorry to keep bothering youJ But the name of the condition they think I may have is autoimmune progesterone dermatitis. If you want to google it. I typed in “autoimmune progesterone dermatitis and rosacea”. Maybe it will help you. Have a good one."
**"Hi Veda. Interesting Veda.. Do you think you ALSO may have rosacea on top? Or does the autoimmune progesterone dermatitis also give flushing and burning of the face potentially, aside from rashes and hives?"
**"Hi Scarlet, I probably have some rosacea but the condition worsens it is my guess. I read that you can get like welts from it like from a drug reaction. And that is what I get. My face doesn’t just get red but it swells including my eyes almost like I got stung by a bee or something….. From the beginning I knew the cause was different than anyone else I spoke to that has rosacea. It started over 2 years ago with me changing my birth control pills and 3 weeks into my pack I got a major flare on the left side of my face that looked like a welt. Then it just spread from there. But I kept taking the pills because the docs said that wasn’t the cause. Over time I changed pills and it either got worse or a little better. When I finally stopped taking them my daily flushed stopped! I was like OMG this is great but then now I get more of the cyclical flushing. Well birth control pills regulate your hormones by preventing ovulation thus not making progesterone BUT you are taking progesterone every day(in the pills) so that is why I got daily flushing. When I stopped taking the pills so did the daily flushing but now my body produces the progesterone during ovulation and that is why I am getting the cyclical stuff. I wish it was caught sooner! But at least now I am aware."**"Hi Veda. Really sounds like your flushing is predominantly hormone driven yes. Gives me hope that yours can also be controlled again once your progesterone is no longer made."
**"Hi Scarlet, I hope so, I have been battling this for 2.5 years now. I tried the medication again and it didn’t work. My doc said he will removed everything and I will be in the hospital for 2 days and out of work 6-8 weeks. I hope this helps it. Had another bad flush last week (right before my period) so it GOT to be that!!"
**"Hi Veda. Yes very good hopes too that this will help you curb those flushes! They are so god awful, I know all about it.... Had a bad week myself, also hormone related!"**"Hi Scarlet, One week and I am so scared. You know, I am mostly afraid that I will be in a horrid flush while in the hospital (based on my cycle) Ugh but my husband thinks I shouldn’t worry as they have seen a lot of bad things so a flush is nothing but I’m more concerned with the pain on my face. Still taking the Ella. it cost me $300 so far this month!! But after the surgery I won’t need it. I do plan on bringing my desk fan, my spritzer (water bottle) and my ice packs. I already asked for the bed near the window (they have two people to a room) UGH!"
**"Hi Veda. yes I understand your worries.. I've been in hospital myself a couple of times, sometimes overnight even and it always was not as bad as I expected... Yeh bring a fan along. Ask for a room of your own so you can open the window yes. I brought the whole circus along haha, including cold packs for them to cool. I really hope all will go well. And that will save you money on the Ella meds as well. So expensive in the US..." [..] "How has the operation gone Veda? I have been thinking of you. Hope you are doing well, and that you are not in too much pain at the moment. Can you open a window in the hospital?"
**"Hi Scarlet, The operation went fine, I was in the hospital for 2 days and the nurses were really sweet. I will have to be on estrogen (patch) if I want to avoid hot flashes. I did wake up with night sweats one night but I didn't mind since that was the first time I sweated in a long time:) I will let you know how things go. [..] Well my flush was horrible last week before my operation but everyone was so nice and understanding. I had my spray bottle and fans. I attached the fans to my IV :) that helped a lot but I really didn't know what was going on anyway, they had me on fentenal so I was out and they gave me oxycodone for at home but I haven't taken it. That is nasty stuff. But my face looks great, even the underlying redness that i had when I wasn't flushing is gone. I am able to sleep normal (not having to sleep upright). I don't have the feeling of burning which I had all the time. I feel normal again. I haven't told anyone but you: ) I want to see how this goes. I am hoping this continues and the operation was the fix. So far so good!"
**"Hi Veda. Well that is FANTASTIC news. Ohhh if only this was the one thing you needed. I really hope you will never get those awful flushes again! Keep me posted. My rosacea unfortunately has so many triggers and even is a daily struggle in my good hormone weeks.. I only know that high progesterone triggers flares but so do hormonal changes for me.. :( It would be too big a risk for me I feel therefore as the sudden changes in hormones could in theory álso affect mine."**"Hi Scarlet, so far my skin has been really good, for me I think mine was all a hormonal issue with progesterone as the other normal triggers didn't affect me. Although heat would kick it up but I wasn't sure how much of that was because my skin was so damaged that it was sensitive from the severe flushing. I"m wondering if my skin was able to heal if a lot of the issues would go away. So far I don't feel the burning like I did, but I will say that time will tell for sure!! I thought it was weird that I got rosacea at 45 when I never had any symptoms in the past. I think my body changed hormonally at that time. If things go well I really want to help others. I know how lonely I was because no one understood what I was going through (except you) and it was frustrating to see so many doctors but I pushed through and bugged them until they took me seriously. That is a lot of work and energy to do, so I feel for anyone else in my position. They can cure hepatitis now but not what we are going through. That shouldn't be. Hopefully that will change. I really hope you find what causes your flushes, keep bugging the doctors! So many people have told me I have to be my own advocate and they are so right. But I will let you know how things go. Again so far so good :) Veda."
**"Hi Scarlet, I would love to help you with your blog. I have read a lot of your articles and they were so informative! So yes I will gather some info in the near future. I want to make 100% sure that this has helped and then I will write down my whole story and you can use what you want. My mom was here today and said that my skin looks brighter and healthy. First time I have heard that in a long time! So I am hopeful!"
**"Hi Scarlet, just giving you an update. So far so good:) I am still home recovering but no flushes since May 6th! There isn't alot of info on line regarding autoimmune progesterone derm but I found this youtube video that was pretty close to my issue. I thought you might want to see it.
**"Hi Veda. Oh wow, It is miraculous really considering how bad you would flush. This is such hopeful news Veda. Thanks so much! I'm going to watch it."
**"Hi Scarlet, I am still going strong. No flareups since before my surgery. I think the last one I had started on May 6th and lasted until my surgery on May 10th. My skin is improving daily and looking like my old self. In fact I worked out pretty long tonight and actually sweated! I am feeling so much better! This surgery was my last resort too. I saw my GP on Friday and he was so happy! I spoke to him about stopping all my meds. We are doing one at a time starting with propanolol.
**"Hi Veda. Aww well that is a wonder story really. I'm so pleased for you. This is stuff most ppl with rosacea can only dream of. Yeh my skin has been awful all week due to period coming up, blehhh. Its also warm here now so I'm flushy all day. Wished mine only had hormones to respond to but my skin flares up from literally everything :("
**"Hi Scarlet, Thank you so much! I know how lucky I am and will not take life for granted anymore. I was in so much pain. I am sorry to hear about your flareup. I hope someone can help you the way my doctor helped me. It was the gyno that figured it out. I do plan on sitting down this week to write down my story for you so you can put it on your blog. I really hope I can help others.**"Hi Veda. That would be lovely Veda. Its been such a roller coaster ride for you! I hope other women may learn from your experience and suffering ❤ I really wonder how many women with our type of flushing may in fact also have this rare progesterone allergy or response that you had. The fact that you had it mainly in the week before menstruation and not from heat for instance may be a very good clue. Yeh not even the summer heat affects your redness? Its great!"
**"Hi Scarlet, It sure has been a roller coaster! I’m still doing well. I had one small flush right on the cheek area under my eyes but I was pushing the limit. I was having a glass of wine outside with my husband and some friends and it was hot and humid. But once I turned to drinking water and fanning myself it went down. But that was one day out of a 2 month time period. I am ok in the heat. But all in all I have improved about 90%. The only time I flush (just a little) is when I had a few drinks a few weeks ago outside on the deck. [..] I forgot to mention to you that I was having hair loss and my nails were very brittle during the flareups. That has now changed as well. My hair is growing back and nails look better. So there are a lot of other symptoms that occur as well with this autoimmune progesterone dermatitis. And the symptoms that happened to me might be different for others but in the end the result is the same."
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