After my most recent trip to the doctor, I have some revised comments about my PUPPS. Well, first, it’s probably not actually PUPPS. Now, this is surprising to no one more than me, but it actually makes sense. First, it is happening super early for PUPPS. Second, it isn’t presenting very much like PUPPS. Third, I’ve sort of gotten it once when not actually pregnant. Finally, it doesn’t clear up for me after delivery – it took some 12 weeks after delivery of the twins for the rash to subside.
So what is it? (Also known as, let’s talk about my skin some more!)
We’re not really sure. We’re pretty sure it’s not cholestasis (I was tested for this last time, too), although I had a blood draw to rule it out. I’ll know for sure next week.
Based on the fact that the rash is prevalent all over my body, it happened in my first pregnancy, and it also happened when I was on Mirena (a type of birth control), it actually seems very likely that this is an autoimmune response (fancy way of saying “rash”) to progesterone. Which is a thing! It’s called autoimmune progesterone dermatitis (APD) – it’s apparently super rare, but I’ve found a lot of sites on it. Based on how rare it is, I’m reluctant to say “yes, this is it,” but it seems to make a lot of sense.
Here is the evidence that seems to support the idea at least.
When we wanted to have a baby the first time around, after a bunch of testing, it was found I wasn’t making much/enough progesterone. Progesterone is necessary in reproduction, so that was not ideal. So the doctor’s solution was to put me on Clomid for three months at the lowest dose, and see if that resolved it. In hindsight, I very strongly side-eye this approach, because I was never monitored for follicle growth and I was not given supplemental progesterone (which should have been necessary if everything he explained to me was accurate). So anyway, the twins were conceived the first month, and besides developing a monster rash during pregnancy, everything went great. As I mentioned earlier, the rash took an additional 12 weeks to resolve, which was pretty awful with two newborns.
Next, after three years on Mirena, I developed the rash again. After repeatedly visiting my doctor and then a dermatologist, I got no relief. At literally every single appointment (and I probably had 5 or 6 with this dermatologist), he suggested that I had purchased new clothes, and had not remembered this fact. These new clothes, he said, were causing this rash, because it looked like contact dermatitis. Every time I saw him, I had to tell him again, that no, I had not purchased new clothes, I was not using a new detergent or a new container of the same detergent, I worked in the same environment (at home, thankfully), and nothing had changed. Finally, frustrated beyond belief with this rash lasting 6 months, I went to my midwife and had the Mirena removed. She said I would know if it was causing the rash within the next two weeks. The rash was gone within two days.
And here we are now. Around 16 or 17 weeks, I got the rash again. Within a few days, it bloomed to cover my entire body. At my recent appointment, the doctor pointed out that PUPPS shouldn’t cover the back (this wasn’t something I’d known), and of course knew that this was SO early for PUPPS. We discussed my history, and decided to try a taper pack of oral prednisone for 7 days, and then see what happens. I’m hoping that the prednisone will reduce the rash, and then my regiment of pine tar showers will keep it at bay. It is getting really ridiculously tiring to shower 2-3 times a day to scrub with the pine tar soap. I would hope that combined with the prednisone, I’ll be able to shower at a more normal pace and achieve the same results.
A bit of an update on the pine tar soap, since we’re here anyway. I have found that lathering the soap with my hands is not effective. It lathers, that works as expected, but the itch relief doesn’t happen. What is effective is lathering with a natural sponge – it’s a bit itchy, but it seems to be very effective for controlling the rash – as long as you can do so several times a day. I am so thankful I work from home. I’m also using an oatmeal lotion (Aveeno) after showering, since oatmeal has anti-inflammatory properties. Oatmeal soaks have not been very effective. I read on one forum that V8 helps PUPPS – that sounds nuts to me, but I actually really like V8, so I’ve been drinking a couple glasses of that everyday as a good practice. My sense is that it is having zero effect on the rash itself.
I wonder how many women get misdiagnosed with PUPPS who really have a reaction to progesterone – both resolve when progesterone levels return to whatever normal is for her body. APD itself seems to actually affect women every single month during their regular cycle – but I suppose it’s possible there are degrees of intensity. Even with this shaky evidence, it makes sense for me to avoid progesterone exposure, and it’s relatively easy for me to do so. This will be my final pregnancy, so once this little fella is born, I hope to never have to think about this again!