Bullous Pemphigoid

[Helpmegetajob]

My mums suffering terribly with this at the moment and it seems medical care is lacking so I’m wondering if anyone has any experience or suggestions of what we can do to get some relief?

it started with itchy red bumps but it’s now full blown head to toe large weepy blisters that are so uncomfortable they are even in her mouth and throat and getting worse. She’s had 3 medical appointments. First they just did bloods. Second gave some
cream and a referral to a dermatologist (long wait) and third prescribed antibiotics and creams. Very sympathetic but it’s not helping and she’s not sleeping and very uncomfortable. Mums 69. Ive read it’s supposed to disappear by self after 1-2 years but she’s had it already a year and it’s progressively getting worse

any advise please on things that helped improve or clear this?

Oh your poor mum.
Check out this webpage about bullous pemphigoid:

www.pcds.org.uk/clinical-guidance/bullous-pemphigoid1

Has she had any steroids yet? Normally the best treatment for pemphigoid. I would certainly be going back to the GP to request ASAP if she hasn't.

Thank you. They’ve not prescribed steroids yet only Antibiotics which I don’t really understand why as nothing I’ve read says this should be used to treat. I’ve just rad it can be fatal, she is really struggling and has them in her mouth and throat so it seems too severe to me. Do you think going to a and e would be better to get access to a dermatologist? This is what the gp thinks. That fermi need to review before they do anything else

I would be pushing for an urgent referral to dermatology, a regular referral would take months. Steroids would certainly help in the meantime, and if she gets very unwell then may need admission to hospital. It's a really horrible condition, so painful and difficult to manage, your mum has my sympathy xxx

Good afternoon. Have just seen your post. How is mum? I'm 66 and just been diagnosed with this awful disease. It has taken a year. GP said it was excema and refused to refer me to dermatology so we ended up paying private. After a couple of biopsies bullous pemphigoid has been confirmed. I feel a bit lost and confused at the moment so hearing someone else's story would be great

Personally I would go to hosputal, if its affecting her mouth she won't eat or drink, they could get infected, she is in pain, you will be waiting ages for a dermatology appointment. Does the gp suggest she go to a & e? Would she be able to sit there possibly for hours. Have you spoken to the gp or 111 today for their advice.

@Sueandroo @TraitorsGate ive just
seen your
comments and looked at the date of my last post (August!) which i can’t quite believe. Well all i can say is it’s been a rollercoaster of a journey. I’ll share below what happened to mum and some ideas on what may help. sueandroo, sorry to hear you have this condition and I hope you get the treatment you need. I will say my mums been quite severe so don’t read on if your feeling delicate right now and maybe come back another time. I remember how frightening it was not having any info so I’m putting this out there to help others who may need to know they are not alone.

Unfortunately for my mum things got so much worse but we are heading the other side now. So between sept and Jan the blisters ended up covering her entire body. I kid you not they were weeping painful blisters that got larger and larger. She was in so much pain. I think dermatologist saw her in October said he thought it was her diabetes meds causing and it needed a biopsy to confirm and treat. That was done December. Told 6 week wait. Then very early Jan she had a major flare with the throat ones, gurgling foaming saliva, unable to swallow and one point breath, a&e via ambo. Spent 35 hrs with transfer to another hospital for an endoscopy to be told it’s the blisters not much they can do, I will say the pain relief and antibiotics plus steroids they gave helped settle and stabilise her but it took weeks for her to regain some
strength. At this point I called the dermatologist to be told she’s under a locum who only works weekends and no body really knew what was going on. GP and I were at a loss (gps been good but said he needs specialist advice due to her diabetes). So I had to escalate it to PALs as she was having huge problems with breathing and tolerating even sips of water. She completely lost her voice aswell. So as soon as PALs were involved we had an appointment with the dermatologist within the week to get biopsy results and treatment. They were amazing once she was seen, dealt with some very painful blisters, taught her how to care for them, gave creams meds etc. they gave her prednisone steroids very high does tapering down over 4 weeks and ran further tests to see about another medication. This messed her sugar levels up 21.4 most evenings but with the gp changing her usual ones managed to avoid insulin for now. We’re still waiting for the next medication that was dependant on the tests but she’s been reviewed by dermo a couple of times as she had another flare a few weeks into Jan with the throat after eating something a bit spicy.

Sorry for the essay but I wanted to give you details so you can understand my advice below:
1: be prepared that this condition can last for 5 years so good management under the NHS is the best option unless you have funds to see it through privately.
2: look after yourself and reduce stress in you life wherever possible! This is definitely a trigger to flare ups.
3: get advice on how to care/treat the blisters to prevent infection. I’m talking creams lotions and sterile blister Popping kits
4: this condition can be wide spread to every part of your body. I mean everywhere, visible on the skin but can effects the throat, eyes even possibly the liver that we know about. Attend your eye screening appointments as they picked up bleeds that needed treatment.
5: if it’s in the throat avoid spicy food!
6: always follow up if you’ve not heard from dermatologist about an appointment and if it’s worsening seek help sooner and don’t be afraid to push for this. Mum had been patiently waiting since Feb 23 to see the dermatologist and things deteriorated so had to push a bit once it affected airways. You may need someone to advocate for you (lost voice etc) so it’s worth keeping someone close to you informed about what’s happening.

we are still finding a way through this and there will be more tests meds etc I imagine to come but at least the rate of them appearing is slowing at the moment.

I wish you well and if you have questions feel
free to ask

Wow. What a terrible time she's had.

Surprised they haven't prescribed steroids yet. My friend' s sister had this and it was the steroids that improved things.