Pemphigoid Gestationis

I'm going to use this post to hopefully help women who think they have or have been diagnosed with Pemphigoid Gestationis (PG). What has helped me the most with this disease is a Yahoo group of women who are dealing with this. I didn't find it from Googling it, so I'm directing you to this group. You have to join to get information. This group offers more support than anything else I've found, including my doctors. It has a forum to ask and answer questions, a copy of the one study that has been done on this disease, pictures, information on how to taper off the meds, and much more. You can leave comments here and I will help you in anyway I can.

This is my story.

Pemphigoid Gestationis is a rare autoimmune disease that pregnant women can get. It mainly occurs around week 21, but I got it 4 days postpartum. The antibodies that protect the placenta become confused and attack your skin. It creates an extremely itchy rash that can form painful blisters. It is treated by steroids - almost always prednisone. Prednisone does wonders, but can cause it's own problems.

I gave birth to a beautiful baby girl and everything about the delivery and hospital stay was perfect. This was my second child and my second c-section. I knew the routine and knew what to expect. I headed home thinking that losing sleep would be my biggest concern. I was healing well, not in much pain, and my baby was such a good baby.

The thing I longed for the most was to clean up in my own shower and feel more like myself than I had in days. As I was scrubbing away some medical tape residue off of my arm, I noticed bumps beginning to appear. I feared I was having an allergic reaction to the tape and immediately stopped scrubbing. Shortly after, I noticed bumps on the other arm and on my inner thigh.

The rash went to my tummy, chest, and back next. A doctor had already ruled out the medical tape reaction, but not before I received an epi shot. You see, I'm allergic to a drug that would be good to use while breastfeeding; the epi shot was the next best thing.

Another doctor thought I was allergic to my pain meds. I got on some more meds to help with the itching and I stopped taking my pain meds. Oh, btw, Benadryl, Zyrtec, and lotions do not come anywhere near to providing relief. The best thing I did was to dip what I could in an oatmeal bath in my sink. (I still couldn't bathe at this time.) When I finished that prescription, I had new blisters. This time they appeared on my hands and feet. Take a moment it consider how hard it is to take care of a newborn when you have blisters on your arms and hands.

I finally went to see a dermatologist. They did a biopsy and it confirmed that I had PG. The doc gave me a steroid lotion to apply to the rash while I awaited the biopsy result. I had to put this lotion on twice a day and not let my baby's skin come into contact with it. It took 40 minutes to apply the lotion. Through a series of crazy events that kept me from communicating with my dermatologist, I finally got a doctor to prescribe me prednisone. Most women start off with 80 mg. I was only given 20 mg because the doctor was nervous - she didn't know me or anything about the disease. This was all God, because the 20 mg worked! I stopped itching right away. My rash began to clear up in the following days. I saw my dermatologist yesterday and I'm on my journey to safely get off the steroid. Below is the only picture I took of my rash.

I'll be happy to answer any questions you may have, no matter how personal or gross. I was a science teacher, so I don't mind at all! This disease was the worst thing I've ever been through and it has altered my life forever. I know that I'm very fortunate that I got it after the delivery of my second child and that I can control it with such a low dose of steroids. I praise God for that!