Anyone else diagnosed with Pemphigoid Gestationis?

[Libby Scallan]

This is my third pregnancy and now that I'm due in 2 1/2 weeks, I just found out I have a rare autoimmune disease called Pemphigoid Gestationis. Since July I've had a rash on my stomach and no one could figure out the cause. After 3 incorrect diagnoses (and after spreading to my legs, feet, and arms) my ob sent me to a dermatologist who did a biopsy and came up with this. Now I'm going on prednisone indefinitely until I go into remission. Has anyone else ever heard of this or experienced it themselves?

[Dianne Rotenberry]

I was on the phone with my sister when I read this, and one of her friends did. It took a long time for her to get a diagnosis, because her OB thought it was just PEP. She used a steroid cream and benedryl to control the symptoms, and it cleared up by the babies first birthday. Her baby also broke out after her delivery, but it wasn't as bad and claered up quickly.

 

Hope that helps!

[Dianne Rotenberry]

Oh, Katherine just called back and said that Christina recommended this for basic info -http://rarediseases.info.nih.gov/GARD/Condition/6497/Pemphigoid_ges...

and this site -

http://www.eadv.org/patient-corner/leaflets/eadv-leaflets/pemphigoi...

Christina's husband was in med school at the time, and was the first to figure out what was going on - these were websites that they used.

 

 

[Libby Scallan]

Thanks Dianne! I'll look at both those sites. I'm using Dr. Weeks at AL Dermatology and he has me on a steroid cream and benadryl too but he's adding prednisone because it took them so long to diagnosis me that the disease has progressed pretty far. My ob told me there was a chance the baby could be born with it, but he said it should go away on it's own. It's just a little scary having something so rare that most drs have never seen it! My ob said he'd never had a patient with it.