Patients Bullous pemphigoid
What is your bullous pemphigoid (BP) story? Let's share!
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Welcome to the bullous pemphigoid discussion group on Carenity!
This space is dedicated to you to share your questions, stories, fears, advice, and much more with other members!
As you know, the diagnosis of a chronic illness, especially if it's rare, can be a life-changing experience. So let's talk about it together!
What was your diagnosis experience like? How long did it take you to get your diagnosis? What symptoms did you have that made you feel like something was wrong? How are you doing today? Feel free to share your story here!
How are you doing? Have you seen our BP community here? 😊
Don't hesitate to share your story, your questions, concerns, or anything else about life with bullous pemphigoid! @Huwcymru@RozHall@grannysyb@Abee74@yogiburr@camuk1@Mossy1@Andy B@AoifeGrace@Ralphieffc@Lynnken@Peterkind
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Courtney_J, Community Manager, Carenity UK
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my sister has been diagnosed with pemphigus foliaceus and is still being investigated. She is in terrible pain and has sores and blisters on her face, neck, back and front. I believe she has eczema or psoriasis too. She is still waiting to see a dermatologist at the hospital. She has tried everything so far but not since recent diagnosis, she has an appointment with specialist on Thursday. She cries and screams with pain every day. Is there any advice anyone can give. She is taking painkillers and antibiotics but she is still in pain and suicidal. Please, any advice out there? X
@KayGoodchild Hi I hope your sister has found the cause and the right treatment for her condition since you posted. But if not, have the specialists looked into a possible link with any medication, including over the counter products? My mom had bullous pemphigoid and at none of the appointments or consultations did they discuss her meds or past meds and that there might be a link. When we found out there is a link between BP and furosemide water tablets, and asked to change to a different water tablet, blisters stopped forming after just a day. I hope this helps, although I hope even more that your sister has already found a treatment that works. All the best.
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I have always been unlucky when it comes to my skin. When I was younger, I was allergic to all types of washing detergent and fabric softeners- would break out in hives all over. Then later, I found out I had psoriasis. That’s what I thought my BP was at first. But the patches were a bit different, then came the blisters. I am used to skin problems but it’s always such a bother. I’ve tried the steroid creams and tablets, but it doesn’t really work. For me, the creams are better than the tablets, but still, for me I usually just wait it out (I don’t like the stickiness of the creams, personally).
Courtney didn't get many responses for this discussion question, so I'll tag a few more members to see if they are willing to share their BP experiences.
@DawnMH @POSTIE9 @annyh46 @Serdie @Tig387 @triciabarrie @Gloria @OAMAAM @Jayne2951 @Suestone @Rory289 @Jazziboi1
What was your diagnosis experience like? How long did it take you to get your diagnosis? What symptoms did you have that made you feel like something was wrong? How are you doing today?
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