Does anyone have any experience of Pemphigoid Gestationis (rare skin condition in pregnancy or just after delivery)?

[Carolinemy]

I have just been diagnosed with PG after giving birth a week ago. It is a very rare condition that only affects 1 in every 50,000 women. Just wondering if anyone else had had any experience with it or knowns any that has had it and what their expereinece was.

[curlimum]

i didnt have PG but i had PUPPP, and apparently they get confused sometimes. the itching nearly drove me up the wall...so if its anything like that, i have nothing but sympathy for you. have you been prescribed any meds/creams?

[Carolinemy]

Thanks for responding curlimum did not think i would get one with it being so rare.
Do you know what the difference is? The hospital have done a skin biopsy to confirm the diagnosis and presumably to rule any other like conditions out. I have been prescribed with oral steriods (prednisolone)and a cream (Balneum)which i have started taking today and am hoping they will control the rash and spread of it. The itching is driving me crazy which is no fun on top of looking after a newborn. Would be really interested to know your experience. What meds were you prescribed and how long did they take to work?

[curlimum]

the difference is puppp only happens with first pregnancies (phew) and its not an auto immune disease (which pg is)- thats just what i got from wikipedia .

my rash started a few weeks before my due date, and i basically itched and scratched non-stop until i gave birth. it seemed to spread out from my belly button until only my face and hands were not itchy. it kept me awake at night, and im actually feeling itchy right now thinking about it!!! i got so fed up of people telling me to 'stop scratching, it will only make it worse' because it was absolutely beyond my control. but im sure you can relate to this!

my midwife didnt really take me seriously, and kept saying it was just because my skin was stretching that i was feeling itchy (i had really bad stretchmarks, so i guess she couldnt tell that i also had a rash all over )...so she wouldnt prescribe me anything, but just suggested using aqueous cream. i also was not allowed any steroid cream because of being pregnant.

anyway, i was all over the internet looking for a cure, and ordered some crazy dandelion root pills, and pine tar soap. they both arrived late in the post after all the itching was gone, so didnt get to find out if they would work or not.

The itching was gone within a couple of days of having my daughter. so weird, but i was sooo relieved. i dont know how i would have handled that with a newborn, yikes

[vacaloca]

I had this too. Or at least I thought I had.

It started about a week before I went into labour. Also started around my belly button and then my wrists and ankles. During labour it really flared up and gradually got worse over the next couple of days until I was covered in huge blisters all over my body except the palms of my hands, soles and (luckily) face. I'd had a CS and could hardly move but I had to change bedclothes often as all the blisters were weeping continuously. They took me to a specialist dermatology hospital, did a couple of biopsies, had dozens of students filing in to look at my swollen body, got asked a million times when the baby was due ('she's two days old, thank you') and was diagnosed PG, although a couple of weeks later they said the analysis for that came back negative so they were at a loss for what it actually was.

They gave me sulfate something or other to put in the bath to soak in for 20min every day to dry out the blisters. Then I had to use a steroid cream, but they were reluctant to give me oral steroids because I was breastfeeding. It took a couple of weeks for the blisters to disappear (they were amazed I didn't have any scars after all that) and all in all I was clear within 4-5 weeks.

I was told that if it was PG I would get it again if I went on the pill or had more pregnancies. I tried to go on the pill a year later and the itching started badly so I stopped immediately. I then got pregnant twice more. With the second pregnancy I knew I was pregnant just becuase my legs were itching in the same place again, but luckily that subsided after a few weeks, flared up again around 19 wks and just before going into labour but it never got bad. With the third pregnancy I only got a bit of itching now and again but was pretty much under control.

You really have my sympathy. Even though the CS was bad, I thought the whole PG drama was much worse - it was taking me around 2 hours a day to put all the creams on, do the soak in the sulfate stuff, etc. The combination of that and a baby that screamed non stop was no fun at all.

[Carolinemy]

curlimum & vacaloca - thanks for your messages. Sounds very like mine in that started on my stomach a few hours into being induced and then got rapidly worse after the birth until at the moment my entire body is covered except palms, soles and face and neck. The itching is totally unbearable!!!

I also had an emergency cs and so dealing with that, PG and newborn is difficult

I have to say the prospect of this happenng every time i am pregnant is upestting although at least i will know what it is and can get treatment for it asap. I also have very painful cramps when i get me period and so have relied on the pill to prevent it.

It is interesting that doctor would not give you oral steriods because of breastfeeding as they have said it is ok for me to breastfeed on them.

It is good to know that you both got rid of the rash after a few weeks as i have read of some women that have suffered for months/ years once they get it.

[rubytwokids]

Ooh - interesting! About 5 days after dd was born I had hives and unbearable itching on my legs. It lasted for a few days and drove me mad! I had it after ds too, but less intense and for a shorter period of time.

Funnily enough, I later was diagnosed with a different autoimmune condition, for which I take steroids. I bf-ed ds for quite a while on those (at least a year, I think) as the doc said I could. I take 10mg prednisolone.

I hope yours soon goes. I send my sympathies!

[nicholab]

I suffered from a severe case of PG when I had my first child in 1995.

I was poorly from about 6 months. At first it was just an itchy, prickly heat type rash which got very angry looking. As a precaution I was admitted in to hospital at 7 1/2 months in order to run tests the next day. During the night my waters broke and I went into labour and gave birth to a little boy 4lb 5oz. He was fine but my red rash developed into blisters all over my body apart from my face. The blisters were horrendous, all over my feet, arms legs and trunk. They were about 3-4 cm wide and about 1.5-2 cm high and filled with liquid.

The Doctors did a biopsy (they took a sample of skin and liquid from one of the blisters) and diagnosed me with PG.

During my week in hospital I was visited by Doctors, Midwives, Students etc. I was photographed for journals as everyone wanted to see what this rare condition really looked like. When I was finally diagnosed I was prescribed a wide variety of tablets, creams and steroids and the condition calmed down after a few months.

I was told not to use oral contraception as this might cause it to flare up again so I decided to have my tubes tied. Fortunately whilst I was waiting for my op I got pregnant again and I had a healthy little boy at the end of it. There were risks but the Doctors kept a very close eye on me. The PG did start up again but I was given steroids etc straight after the birth and the symptoms were a lot less than my previous pregnancy.

My little boys are now 13 and 14!

[yah2207]

I had PG at 35 weeks and my lovely daughter was born a wek later by CS. I am now thinking about another baby but can't bear the thought of going through the PG again.

[walkerkvm]

pemphigoidestationis.tumblr.com/

[DutchieM]

Is there anyone who diagnosed with PG? I suffered from it when I was pregnant of my first Son. Hè is born 8 months ago and it was a horrifying. I would love to have another baby but I am so afraid to get it all over again. I have been to Many doctors but nobody can really help me. I got prednison after giving birth. Also when i was Breast Feeding my Son. I read About a new medicine called LDN it is for auto immune diseases. I hope someone has experience with this medicine. I hope to get in contact with someone with the Same disease. In Holland it is very rare and hope in other countries there is more knowledge.

[leaaxox]

I had I got diagnosed with BP at 23+ week pregnant , at first docters thought it was just a pregnancy rash.. then it got more seriouse, itching constant, burning skin, I then started blisters.. they gave me steroid creams and prednisolone..
I went into hosp one day with my face swollen and all blisters, I was in agony. . I got rushed to another hospital having to get a c section with my daughter at 35+ week,
I was in that hospital for 2 days as this hospital didnt have a dermatology ward I got rushed to another hospital being seperated from my premature baby, I got told it would calm down after delivery. . No it didnt it got 100 times worse I couldnt walk, couldnt do anything. .
Was in a wheel chair for 3 weeks.. blisters from head to toe..
I had to get my immune system suppresed.. I was fine in my first pregnancy. . This was my second baby .. shes now 14 week old im still getting creams, prednisalone, and my system suppresed.. my skin flares up bad if im late on my treatment.. and sometimes get blisters here and there, this was caused by being allergic to the placenta.

[leaaxox]

Also I have been told NOT to get pregnant again I have to get sterilized , docter said if I get pregnant I will get it at start of pregnancy and worse.. It will kill me and the baby. . So no more for me im only 23 :(

[Magdalena32]

Lea axox I don't know who told you that but that is not true. You could end up with other pg but not die or baby die. I had pg with my second son and was horrible I didn't want any more after what I went through bit I tried for nr 3 and I was mad re then fine of course I took some vitamins and watch over my body non stop but I didn't had any symptoms of pg at all.you still young ask yor doctor and dermatologist as I did to make sure I will get that support if I needed just in case.good luck

[kirstieann16]

Hey mummies. I know no 1 has posted on this thread in awhile but hoping to get a response.......im going insaine with this itching docs are thinking its pemphigoid gestationis but waiting on biopsy results :( im so scared as im only 24 weeks and the thought of being like this with these horrid itchy burning blisters all over my body (including hands and soles of feet) is soooo daunting. What treatments worked for you? Could you still breastfed even if the itch was on your breasts and did you have any other complications during your pregnancy/labour? Was bubs full term and was bubs fine? Thanks pleeease help :(

[trbern]

Was anyone's children born with PG blisters or rash? Our son has blisters neonatologists and dermatologists believe is PG (I was diagnosed during first pregnancy) and we're looking for tips to deal until it resolves.

[Lisavic90]

At 24 weeks 3 days I developed an itch without a rash and went to doctors who gave antihistamine. This did not help. Within 2 days the rash had spread over legs, abdomen and arms and started to blister. My blood was tested and everything was fine apart from the rash which was spreading and unbearable. By 26 weeks I was referred to a dermatologist who did skin biopsy and at 29 weeks was confirmed PG. I was prescribed 20mg predisilone and started this on 6/1/16. Before this using steroid creams which did not help. Within a day of oral steroid the rash started to dissapear and they have actually reduced the steroid to 17.5mg. I have had regular growth scans and appointments with both obstetrician and dermatologist to monitor me and baby. Baby seems to be growing fine, however they are inducing me at 38.6 on 14th March due to the small but possible risk that baby could develop a rash. I have been told breastfeeding can help the condition. I am 37.4 weeks today and are happy with progress and have had no other complications.

Hope you get something to control the itch as it drove me mad, could not sleep was horrible. The tablets have helped and the rash is almost completely gone. I hope the baby doesn't develop it however have been told it would go within a few weeks of birth so in the long term not going to affect babies health.

[boymom01]

I'm so sorry this is happening to you. I had a rash developing at 22 weeks gestation and it looked like little ant bites in my belly button and on my feet. It gradually spread onto my legs. When I went to the doctor and asked her about it she told me it was pregnancy rash and to use Benadryl and calamine lotion and it should calm in about 3 days. Needless to say it continued to get worse. The rash spread everywhere within days. I went to the ER and they told me it was a bad rash and suggested what would I like them to do about it. So I contacted my doctor again and she cleared the path for me to go and see a better doctor the following day. This doctor insisted I had scabies. (No pets ever, no outdoor activities, nothing that could've opened me to that disease) after arguing with her that it wasn't scabies she still prescribed me a scabies cream (83 freaking dollars) that only made it worse. Once applied it turned me fire truck engine red and had to immediately jump in to a cold ice bath. I have tried everything under the sun to get this rash to go away. From dandelion pills to the tea. Tea tree oil, coconut oil, sarna lotion, oatmeal baths, pine tar soap, yogurt, grease, clear nail polish, rubbing alcohol, peroxide, etc. nothing helped at all. So I did my research on my end. And I found out about PG. I waited at my doctors office for 4 1/2 hours and told them all about it. I was then diagnosed with it And was given a 120mg steroid shot. I am taking Prednisones tapered steroids, hydroxyzine and lorazepam. They help more than anything. My best advice is try and not scratch (I know the most annoying thing to hear when it's so totally unbearably itchy) and take cold showers and ice baths to soothe the itching. Ask your doctor to prescribe these meds and DON'T EVER GET PREGNANT AGAIN BC IT WILL COME BACK.