Just been diagnosed with Pemphigus foliaceus. Does anyone else have it?

Yourinmyspot · 2025-03-13T15:51:49+00:00

I had a skin biopsy done a few weeks ago, it went off for a second opinion as they weren’t entirely sure of the diagnosis. The dermatologist I’m under rang me this morning to say it’s the above condition. I have read a bit about it online, but does anyone have it? Just getting my head round it really.

verycloakanddaggers · 13/03/2025 23:54

No knowledge but I thought I would bump the thread for you

lionbrain · 14/03/2025 15:51

Please dont take offence but my dealings with it were with my dog. It started suddenly and the medics think it may have been started by a drug he was on.

He had a heavy dose of steroids and they said it would keep occurring and he would need a low dose of steroids for life.

The initial outbreak was stopped by the steroids and we slowly weaned him off the steroids. It did not recur with him for the rest of his life so we were surprised as that was not the outcome we were told.

I hope they can get it under control for you and that it does not flare up to often.

ElbowsUpRising · 14/03/2025 15:58

Well my cat has the same as you and dh has bullous pemphigoid which is a similar autoimmune skin condition with blisters.

dh was admitted as a medical emergency after being fobbed off by the GP for months, I was really concerned about his blisters and sent him to a&e one weekend and he was admitted and treated as a burns victim due to the amount of broken skin and massive fluid filled blisters. He had more raw skin than intact skin on his arms. His legs were a mess too. He was on steroids for a long time and then tapered them down and is now on some unusual antibiotic I think which also works for his condition.

the cat was also on steroids for a bit. She had blisters on her paw pads.

the vet was very bemused that the cat and dh both had such similar conditions but swears it’s not infectious.

theres a very good fb group called pem friends

ElbowsUpRising · 15/03/2025 06:12

@Yourinmyspot i hope you’re doing ok. Have they started you on steroids?

Original poster

Yourinmyspot · 15/03/2025 19:33

lionbrain · 14/03/2025 15:51

Please dont take offence but my dealings with it were with my dog. It started suddenly and the medics think it may have been started by a drug he was on.

He had a heavy dose of steroids and they said it would keep occurring and he would need a low dose of steroids for life.

The initial outbreak was stopped by the steroids and we slowly weaned him off the steroids. It did not recur with him for the rest of his life so we were surprised as that was not the outcome we were told.

I hope they can get it under control for you and that it does not flare up to often.

Thank you, that was helpful.

OP posts:

Original poster

Yourinmyspot · 15/03/2025 19:38

ElbowsUpRising · 14/03/2025 15:58

Well my cat has the same as you and dh has bullous pemphigoid which is a similar autoimmune skin condition with blisters.

dh was admitted as a medical emergency after being fobbed off by the GP for months, I was really concerned about his blisters and sent him to a&e one weekend and he was admitted and treated as a burns victim due to the amount of broken skin and massive fluid filled blisters. He had more raw skin than intact skin on his arms. His legs were a mess too. He was on steroids for a long time and then tapered them down and is now on some unusual antibiotic I think which also works for his condition.

the cat was also on steroids for a bit. She had blisters on her paw pads.

the vet was very bemused that the cat and dh both had such similar conditions but swears it’s not infectious.

theres a very good fb group called pem friends

Thank you that’s helpful. I’m not on steroids at the moment but I happen to already be on doxycycline daily as I kept getting repeated infections (still do already had 7 extra courses of antibiotics this year). I’m also already on Mycophenolate mofetil (MMF) for what they initially thought I had and I’ve read this is also used for PF. They had reduced my MMF dose last year and it did flare up again, so they have been slowly increasing it.

I will have a look for the Facebook group.

I hope your DH is doing well.

OP posts:

ElbowsUpRising · 16/03/2025 18:02

Yourinmyspot · 15/03/2025 19:38

Thank you that’s helpful. I’m not on steroids at the moment but I happen to already be on doxycycline daily as I kept getting repeated infections (still do already had 7 extra courses of antibiotics this year). I’m also already on Mycophenolate mofetil (MMF) for what they initially thought I had and I’ve read this is also used for PF. They had reduced my MMF dose last year and it did flare up again, so they have been slowly increasing it.

I will have a look for the Facebook group.

I hope your DH is doing well.

Show quote history

Thank you. Yes the drugs he’s on now seem to be keeping any blisters at bay which is good.