Anyone got pemiphigus

[Purplepeoniesdroppingpetals]

Hi all, depressing saga of deteriorating skin, misdiagnosed, over ages and ages. My skin has been deteriorating under my arms for two years, and my scalp then joined in. I’ve got sores on my back, boob and arms. Went private and the dermatologist reckons it’s pemiphigus foliaceus and I also have a scary mole that needs removing. Blood tests followed and then silence. He’s pushed me through the NHS route as I was self funding and wouldn’t have been able to cover the costs privately, but was reassuring as I need to be seen urgently. Saw him in July and got an appointment through yesterday for end of October.

in despair. I’m covered in scans which hurt so much and have lost a quarter of the hair on my scalp because of a pseudonomas infection. I had ciprofloxacin which looked like it was clearing things up and then it’s come back again and part of my scalp actually looks a bit black. I’ve sent my gp and the consultant pictures - requested as I don’t just spam people - but heard nothing. I am despondent and panicky - I feel like I might need to actually develop sepsis before I get taken seriously. My hair stinks of pus and I’m so down. Any advice?

Covered in scans not scans

Ffs scabs- autocorrect is clearly offended by descriptions of my body

My DH might have it. He has some sort of mystery skin condition that no one can diagnose. I’m in Australia so a slightly different medical system. Multiple specialists but no diagnosis. He’s covered in scars on his arms, chest, back, legs and some of his scalp. It seems to have some sort of autoimmune component. He’s also got horrible pain and fatigue.

He’s on quite a few medications. Can we name them on Mumsnet?

I don’t think it’s an issue to name medication - I really feel for him. This is so utterly miserable and I’m in limbo waiting for more test results then a biopsy. Is he on corticosteroids?

He’s had biopsies, blood tests and skin swabs done. Various GPs, dermatologists, immunologists, a haematologist and a General Physician (a specialist, not a GP). No diagnosis. We went private instead of relying on the public health system because it’s slow and shit. Medicare rebates have covered part of the costs.

He’s currently on Prednisolone, colchicine, dapsone, low dose Naltrexone and weekly Humira injections. He uses a 2% ketoconozole antifungal shampoo as shampoo and body wash. I put an antifungal hygiene rinse in the rinse cycle of the washing machine. His clothes are washed in a separate load to mine and our DD’s.

Previously he’s been on larger doses of Pred., many different long term antibiotics to the point he’s developed antibiotic allergies, antifungal medication, various steroid, antifungal and antibiotic creams, and Methotrexate.

He no longer needs to use 40+ bandaids each day to cover weeping sores. Very few open sores these days. They no longer stink. The smell in summer would be gross, and his clothes would have ooze and blood on them despite trying to cover the sores with bandaids.

Take lots of photos of your skin. Doctors need to see photos of when it’s particularly bad. Take photos of used bandaids or dressings with ooze on them so they can see what comes out of them. Take photos of the sores at beginning, middle and end stages of them and the resulting scar. Put the photos in their own album in your phone so you can easily find them during an appointment.

I should add that he’s had this for 7 or more years. It’s affected his psychological state because it hurts, doctors have implied that the sores are self inflicted and imaginary, it looks ugly and people will do a double take at his appearance and move away from him. At one stage it was so painful that we couldn’t touch him at all. That was months or years. I can’t remember now. We’d have to ask to touch his arm or hand so he could brace for the pain and direct us to a less painful part of the body part.

Aw man that sounds so hard to live with! I’m at the unsightly stage, with many small sores that peel and bleed, then scar. I look like dot to dot on my back. I’m really scared about the future and don’t know what else to do - can I ask if he gets them in his mouth as I’ve started getting blisters and blood blisters? I’m so sorry that you’re all going through this - I feel terrible and he’s in such a worse state.

He doesn’t get them in his mouth thank goodness. He used to get mouth ulcers if he was particularly stressed. These days he will dab some bicarb on any that start and that clears them up. Tastes terrible apparently but effective.

He’s increased his intake of zinc, vitamin C and vitamin D through supplements and that seems to help too.

Whatever this illness is, it sucks. I don’t understand why doctors aren’t interested in trying to work it out and help him get better. It’s pretty much a case of when pathology results show nothing that they then give up.

Try the antifungal shampoo as a body wash. Use it as a normal shampoo but leave it on for 5-10 minutes before rinsing it out. It should have instructions on the bottle. Get yourself clean in your bits and pits with your usual products then use the shampoo as a body wash. Leave it on for 5-10 minutes before rinsing off. It’s honestly the thing that’s consistently made the biggest difference.

Fresh towels, sheets, etc more often than usual. Use an antifungal rinse in all washing machine loads. Canestan is the most well known brand. Aldi in Australia has a version so I’m guessing Aldi UK does too. Washing then needs to either go through a hot dryer to kill off any infections that might be present or into some bright warm sunshine to use the natural sterilising ability of UV sunlight. It’s summer over there, right? Take advantage of it.

I just remembered something else that might help: antihistamines. Do you get itchy? Daily antihistamines might help.

If you have pets make sure they’re flea treated and don’t have any skin infections. Bath them in medicated pet shampoo and thoroughly wash and dry their bedding and toys. Eliminate any chance that there’s infections passing between you and them.

Yes. I have familial benign chronic pemphigus. I get flare ups if I am majorly stressed and have a really strong steroid cream for it. I have it under my arms. My mum has it as well, she gets it under her boob. My auntie gets it everywhere, most recently she had it in her throat. Very painful.

Thank you for the replies - I’ve been very low after a a terrible weekend - tmi but covered in pus from a secondary infection that has removed lots of my scalp (again). Had a horrible convo with a gp on Friday who told me that pus was good; the spreading black colour on my scalp was a sign of healing and that nurses are better with wounds than drs (she wouldn’t see me - this was over the phone). Another gp had a contrasting opinion thankfully and I’ve made a complaint, but any progress from the last month has gone. Thankfully, I copied my consultant in on the complaint and he’s got me an urgent appointment on the NHS! Ridiculously excited to be going to hospital in two hours!

And thank you for the information - it’s been invaluable!

Glad that you’ve managed to get an urgent appointment @Purplepeoniesdroppingpetals . Hope it goes well. Please update us when you can.

Two skin biopsies done today; now waiting for an hour of skin peeling (sorry - no other way to put it) on my head as it won’t heal otherwise. Drs have been brilliant but want to do a daily treatment on my head for at least the next week to two weeks. A bit shaky from the sudden flurry of treatment and also the idea that my skin is coming off before it heals. Have a bag of steroid creams and antibiotics and a burgeoning sense of outrage at the knowledge that my gp didn’t even make the referral to the hospital; instead it was because I went private that I got seen as the consultant pushed it through. Really, really angry about that - but of fear about the treatment is mixed in with that.

@Purplepeoniesdroppingpetals so sorry to hear what your going through but good to hear you’re finally being seen.

may I ask which department you saw the consultant was it Dermatology? My mums suffering with pemi has them everywhere and scarring but is still only at the cream and antibiotic stage. Waiting on an nhs appointment

Hi so sorry - just saw this. Yes referral was to dermatology and since mid august I’ve had the best care imaginable. They can’t believe how long the gp waited and didn’t refer me and tbh I got seen because I paid for one appointment privately and then ended up in such a mess with two different kinds of dangerous pseudomonas infections in my scalp.

Am now on two different kinds of massive steroid, immunity suppressants and calcium but it’s going well - things are currently under control skin wise and a month of a consultant prescription for an antibiotic cleared up the infection with daily treatment from nurses on my scalp.

ir cost me £210 quid for my appointment and whilst it was a stretch and I had to wait six weeks for that, it was absolutely the most important money I’ve ever spent.

apparently most dermatology clinics have an emergency list - I got told to talk about the impact on mental health (I was in a mess) and my ability to work (stinking of pus dribbling down the back of your head when you’re trying to teach isn’t great) and to ask the gp for an expedite letter for a referral. It’s the most miserable thing - I hope your mum gets treated soon.

Thank you for letting me know. My mum has had a her dermo appointment and straight away they concluded it’s not this condition but actually a reaction to her diabetes medication. Seems very strange and No had any idea this could be causing it but they are 90% sure and just want a biopsy to confirm.

antibiotics seem to be working well with the creams for now