Wednesday, May 19, 2010

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!

21 comments:

Kaitlin said...

Wow! Those blisters look so painful! I can't even imagine. Glad you are on the road to recovery.

BECKY said...

i can't begin to imagine how painful and frustrating this experience has been. i am so sorry you had to deal with it, and amazed at the way you have plowed through it with strength and grace.

Lindsay said...

What an awful ordeal. You are an inspiration to us all. I know you were frustrated (that word probably does not come close to describing what your felt) but your trust in God really shows through. Thank you for sharing your story and using your story to help others. I will continue to pray for you and your family. Love you.

Rachel said...

I am so sorry you had to go through that right after Julia was born...that would have been enough! How great for you to share your story to hopefully help others. I am SO glad that the low-dose steriod worked for you and that you are on the mend.

Sairah said...

I totally understand how you feel hun.
I'm sorry you had to go through it *hugsau

Supermom-In-Training said...

That is just a terrible way to start life with a newborn! You really are an inspiration with your great attitude during the whole thing! I'm so glad that everything is getting better so you can enjoy time with Julia!

Shannon said...

Wow, Brooke! Those blisters look awful. I'm so glad you are feeling better!! My pregnancy rash was nothing compared to yours:)

Lynn Leaming said...

Wow Brooke! Who knew??? Sorry that you are the voice of experience on this one. When I had the fixator on my leg, I also found a yahoo group who were a wonderful support. Hope the Lord will use you to bless other women.

Meredith said...

Oh Brooke!!! When you said blisters, I had no idea you meant something like that. Oh goodness! I'm so glad the steroids are working. Ha! You and I can be steroid buddies, any athletic events you want to go participate with me? When we're investigated for winning we can honestly say they were medically necessary. LOL! :) Just kiddin'. Love you Brooke, you are a brave girl to deal with all of this.

Anonymous said...

Hi Brook, thank you so much for sharing your story online. I have recently been diagnosed and just wondering if your rash stopped completely after being weaned off the prednisone? I currvently going through this.

thank you,
Carissa

Brooke said...

Hi Carissa,
I'm sorry you have this awful disease. I was able to wean off prednisone by altering days of 20mg/15 mg for a week and then 15mg/10mg for a week, etc. Once I was off, the rash stayed away (for good too) but I was left with adrenal fatigue. That left my joints hurting and I was in pain when I held my baby. I took licorice pills that I found at the health food store and it immediately helped. I had to take it a couple of weeks or my pain would return.

The best news of all is that I just had a baby in April and never got PG. You can find my posts on the Yahoo PG boards I referenced in my post. I think you can do a search and type in LDN or Low Dose Naltrexone. That's the medicine I took prior to getting pregnant and throughout pregnancy. Unfortunately, I'm not sure if it works if you are already flaring I just want you to know that you can have a PG-free pregnancy. I did LDN and a vegan diet. I saw Dr. Farra Swan in Phoenix to get the medicine. It was so worth the expense to travel there. Let me know if you have more questions. Bless your heart. I know you are suffering terribly.

Anonymous said...

Hi Brooke,

Thanks for your reply, I do remember reading your story in the yahoo support, didn't realize you two were the same person :).

Congrats on your PG free pregnancy, that gives me hope, although we are officially done (2 wonderful boys) I just want to be PG free and enjoy life, right now I feel like everything is on hold, but I'm sure it will get better with time. I'm weaning to 30mg this week from 40mg. I really hope I'm on the road to recovery. Thank you again for sharing your story!

Carissa

lamaa said...

I am so sorry you had to deal.

I am having same problems, I gave birth to a baby girl in december 7 2013, two days after my hand start itching, the next day my arm leg back itch like crazy I went to see a doctor he told me you PG.
He gave me cream and bendry and after four weeks almost I am still using but one rash goes away two more come out . I have appoint. today I wish I could email you my pictures. I IN PAIN I wish this bad rash will go away, I will never get pregnany again HELP God

Brooke said...

lamaa,

I'm so saddened to hear about you getting PG. I hope your doctor prescribes some prednisone today. Please email me if you need to talk. perkbro@yahoo(dot)com. One thing I wish I had done was communicate to my doctor how miserable I was. I tried to act normal in front of people, but I should have shown how crazy it was making me.

Jamie E. said...

Do you still check this blog, Brooke? If so, I'd love to hear more about Dr. Swan as I am in the Phoenix area. I had PG with my son 5 1/2 years ago and it started at 28 weeks. Was pretty awful but didn't get the blisters until after I delivered. Was put on steroids on and off for the whole ordeal but it pretty much cleared up about 6 months after pregnancy (only had the blisters for about a week until they put me on prednisone). After many years of debate we finally decided to go for baby #2. I am now 7 weeks pregnant and starting to get the itch but no bumps yet. I am told by my OB that I will likely have to go on the steroids for my whole pregnancy BUT 7 months seems soo long to be on them. I am desperately seeking alternative treatments! Or at least some reassurance from some ladies that have had to take the steroids for that long of a period of time. I was in the yahoo group last time but I remember getting pretty freaked out by some of the wonen's stories so i am hesitant to get back in there!! ha Thanks for reading! :)

Amy said...

Hi! I was just diagnosed a week ago with this, I'm 23 weeks pregnant now. I'm taking the prednisone now, they started me on 40 mgs. I wasn't sure if you still check this or would see it as it's from 2010. I would love any other information you may have. Thanks!

Brooke said...

Amy,

I am so sorry about your diagnosis! Feel free to email me at perkbro@yahoo(dot)com and I can send you much more information. I took a drug called Low Dose Naltrexone with my next baby and had a symptom-free pregnancy, so have hope! Here are two links of support groups with women who have had PG. They have been the best thing for me! https://groups.yahoo.com/neo/groups/PemGest/info and the other is a private Facebook group. You might be able to search for it to find it. If not, email me and I'll get you invited.

LeslieB said...

Hello,Thank you for your transparency and offer to answer questions! I had this rash immediately postpartum. It was diagnosed correctly 9 days later. Prednisone prescribed 25 mg, I believe, over 6 days. It mostly cleared ,just my wrists / lower inner forearm ,mainly the right my dominant arm left to heal. I ended the prescription days ago and the rash doesn't seem to really be getting better. The circles just get wider and some blisters still form. I really don't want to do prednisone again, I believe it has caused other issues in my body as one of the side effects of prednisone is lowered immunity. All this to say ,ideas for alternative treatment!!??

I know this was posted long ago!! But hoping you can respond :-)

Thank you
Leslie

Brooke said...

Hi Leslie. It is so good to know that you got diagnosed so quickly! To me, it sounds like your doctor should keep you on prednisone longer until you clear up completely and then work on weaning you off of prednisone. I think you also saw my post about Low Dose Naltrexone. I found out about LDN when another PG lady was having trouble weaning off of prednisone without her rash coming back. Her doctor put her on LDN to see if it would help. I researched it and thought it sounded like a great alternative. You may look into that if the rash keeps reappearing or you want more children. If you are on Facebook, I highly recommend searching for the Pemphigoid Gestationis group and join. They're the best. Also, email me at perkbro@yahoo(dot)com if you want to talk or have more questions. Congratulations on your baby! I hope you are feeling better soon!

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