Long term itchy rash, photo inc. GP no idea

[CormorantStrikesBack]

Dh has had this weird rash thing for over a year. All over his body from legs to scalp. Extremely itchy. Starts off as small bumps which have clear fluid and then turns into larger welts.

Gp did prescribe loads of steroid cream, powder and wash which seemed to help a bit but not cure. And as soon as he’s run out it’s flared back up intensely. He did have relief from the itching while using the cream.

Nobody else affected, we haven’t changed wash powder. Normally fit and well.

I did wonder coeliac as dd has it and I know it can affect the skin. He’s waiting for blood test results. Any other ideas ?

Sorry, realised the thread had moved on. Please ignore my previous post.

"Bullous pemphigoid - NHS" https://www.nhs.uk/conditions/bullous-pemphigoid/

Jakers that's so rare

Dh is feeling ok but a bit disgruntled to read it’s an old person’s thing. 😂😂. He’s in his 60s 👍🏻

😂😂 mine was not impressed when his prostate issues were attributed to his age.

I'm so glad that a dermatologist has seen your dh @CormorantStrikesBack

A really hope a diagnosis will mean they can get the correct treatment in place

My rash did not look like that but maybe worth trying no fragrance in soap and shampoo?

Has anyone/dermatologist suggested this could be an ID Reaction? (pronounced Ide) It’s an immunological response to some kind of separate infection.
Is he on antibiotics now - if so what and how long?
I only ask as both my DD and I have had ID Reactions recently. Both needed to be seen by a private dermatologist in the end as the wait for NHS was months long and we both been suffering for a couple of months, respectively, DD had been to A&E, walk in, GP - some more than once and I had seen about seven different GPs/other practitioners. None of them had the foggiest what was going on and more than one of them got a second opinion (one got a third opinion!).

In the end it was traced back to a particularly nasty bacterial infection that had not been fully treated and had resulted in these huge immunological overreactions in the body. Unless the initial infection is successfully treated (not always bacterial, can be viral, fungal) it just goes on and on. In various different sites on DD it resembled pruritic rash, small blisters, psoriasis (that was mainly in her hair), eczema and hives. I was similar but mine was restricted to my face and scalp whereas hers was all over. The suggestions ranged from cellulitis, gluten allergy, penicillin allergy all the way through to shingles (even though it wasn’t confined to one side). It can resemble perphemigoid in some cases apparently.

The Dermatologist did have two criticisms - one being GPs/docs are so reluctant to do skin scrapes/swabs (I asked for one and was told it wasn’t necessary!) when, even if they can’t tell you what it is, they might be able to tell you what it isn’t. And secondly, GPs being extremely reluctant to give more than seven days of antibiotics even when it should be clear the infection hasn’t resolved after the course. I was given three separate 7 day courses - which treated it but it kept returning and 7 days of antivirals plus steroids. None of which knocked it on the head. Dermatologist prescribed a much longer course and just a small amount of hydrocortisone cream to deal with the various rashes/itches. Fingers crossed that’s sorted it but after it starting just before Christmas (and October for DD), still have scars - they will heal eventually with time and a lot of moisturising.

Anyway, might not be that at all I’m not a Dr after all, but I have had something similar recently and that was the diagnosis.

Hope the CT scan and biopsies give you both some answers. It sounds like a really frustrating situation. Keeping my fingers crossed for you and your husband.

@MandyMotherOfBrian nobody has mentioned this. The dermatologist seemed very confident it’s pemphigoid but if the biopsies don’t confirm this I’ll ask about that.

ive been googling pemphigoid and seems there’s no cure. Only treatment as such is steroids to try and reduce the symptoms. 25% of people die within a year of diagnosis…….I’m really hoping that’s because most people are old when they get it? But there is stuff about the long term steroid use causing problems

Two weeks ago I read that 25% of people die from what my son had as he lay in hospital. He's home now recovering. So try not to panic.

Also look after yourself. My DIL is exhausted, traumatized, by it all, so is trying to eat well and rest more now.

Most people diagnosed are over 80 op. Also, Many of those developing it will have developed it as a side effect of cancer (or other serious illness) treatment. I imagine that the underlying condition is more likely to have lead to a death rather than the BP itself. My relative was over 80 when they developed it (post surgery for an immune illness complication) and they lived a good few years after it op. Try not to worry too much about statistics, easier said than done though I know. Look after yourself now too, now you know he’s getting the right care.

Saw your update :(

Read the nhs website.

It says many people go into remission from it with treatment - mainly steroids.

Obviously we know long term steroid use has its negative side effects but you can recover from it. My dad had steroids when he had chemo.

4 years on and the steroid effect has worn off and he's doing well.

Also this is quite informative and includes some journal references.

https://www.aad.org/public/diseases/a-z/bullous-pemphigoid-treatment

My DH has been on steroids for 30 years as a transplant recipient.

i was on steroids for about a year for a really bad skin problem, but they weren’t working, so now i take an injectable biologic.

there has been a lot of development in skin conditions in the last few years. When I first started having serious, life changing problems, the drug I’m on now was still in trials.

it takes time and it’s frustrating, but try to be hopeful.

My neighbour had a heart transplant 23 years ago, he's on steroids. Still going at 77

Hi @CormorantStrikesBack just checking in on you both?

Hope things are ok with the CT & treatment.

Thank you. Yes CT went ok Not sure how and when he gets the results. He has dermatologist in six weeks so possibly then

Glad the scan happened & hope things get better.

NRTFT but could it be Stephens Johnson syndrome?

just as an aside. i had a friend who went through hell with his skin, and had dermatology appointments, hospital appointments.. turned out to be hyperthyroidism.

It wasn't until he started losing weight hand over fist that they tested for it, and flagged this his ongoing skin issues were likely related.

I hope the dermatologist is right and he gets the right treatment for it.

They look like when my kid had infected molluscum