I was out of town last week when I got a call (around 8pm on a Friday evening) from my OBGYN practice. It was the doctor I’d been working with on getting this rash figured out. She had discovered that the rash was indeed autoimmune progesterone dermatitis of pregnancy – I get a nasty autoimmune reaction when I have too much progesterone in my body, and it manifests as urticaria – hives and a rash.
Even though I had suspected this was it, it was a relief to have a real diagnosis. The doctor was really excited to tell me, as well, likely because it is unusual. I found out at my next baby appointment from the midwife that my case had come up in the practice’s monthly all-hands meeting.
Having a diagnosis is important. I spent the weekend reading forum thread after forum thread written by women who were driven to distraction by this rash, and getting no relief, or women who triumphantly posted “after 20 years, I finally know what this is!” Twenty years. When I was using Mirena and kept getting sent to the dermatologist, I felt their frustration. I am sure there are thoughtful and caring dermatologists out there, but this one was not.
Most women who get APD have an autoimmune reaction that lasts a few days before their period until a few days into their period. Every month. In extremely rare cases, the autoimmune reaction is anaphylaxis. As if puberty weren’t upsetting enough – bleeding and anaphylaxis. I’ve never had a reaction that extreme, obviously. I do remember having itchy legs for years right before I’d get my period, and it was the only way I’d know when it was coming – it actually seemed so normal, it didn’t occur to me until this past weekend that it was a reaction or symptom. I may have lucked out having a wildly erratic period, even though that and the lack of progesterone that I make naturally obviously contributed to our difficulties conceiving.
I’ve been taking prednisone daily since Monday, and the itching has gone down tremendously, in a way that I have been unable to achieve with any other remedy. I still scrub with pine tar soap, but I no longer have to do it 2-3 times a day to get a little relief. I am able to sleep most of the night! I avoid getting too hot because I still tend to flare up a little when I do.
This photo, taken about 2 minutes ago, shows how far I’ve come. During the worst of the rash, my legs were puffy and covered with hives – the bumps like gooseflesh, the skin ankle to knee, over the knee, around behind the knee, up my legs to my belly was rutilant, angry, like it’d be sandpapered – and that was happening over my whole body. Now, most of my skin feels fragile and paper thin. Dry, but dormant – no more itch, for the most part. I think in part, some of my tiredness is my body working on slowly healing this large (getting larger) organ.
There is relief in a diagnosis, because I know what to avoid – progesterone – and I feel like I can get back to real life again. Even for something that seems minor (although if you have full body hives, you know it’s maddening), I know I wasn’t at my best. I couldn’t sleep, I couldn’t focus. I had to force myself to pay attention, and a large part of my mind was constantly consumed with not itching. Itching made it worse. The scratch/itch cycle is impulsive and imperative. You do it because if our ancestors didn’t swat away bugs, fleas, and the like, they could get life threatening diseases. Even now, proofreading a little, I accidentally find myself scratching my back. I have scratched all the soft areas that itch into bruised scabby fields. It’s disgusting, and I feel disgusting.
I know that I’m healing, and each day, bit by bit, my skin is getting healthier. I’m eating food that is nourishing for myself and my baby, and we are both getting stronger. I am able to be a good partner to my husband again, and share without agony the daily travails of childcare. The kids are growing up faster each day, and while they were sympathetic to my “scratchies” have blissfully forgotten about it again. And tomorrow I’ll itch a little less.