Specialist/Dermatologist help (sorry, this is long)

[BecauseImWorthIt]

This may be a long shot. My dad (78) has just been diagnosed with bullous pemphigoid

He is really suffering - a rash/blisters, constant itching, can't sleep because of it.

He is also diabetic (late onset).

I live in London and he is in Leeds, so I'm limited in terms of what I can do day to day. My brother lives close to him, but is less aware of the issues to do with his health (although always concerned and willing to help)

He has been suffering for a while, but was diagnosed 5 weeks ago, and has been taking steroids as well as (I think) various antihistamines for the itching.

However, no-one has asked him about the laundry products that he's been using, and it turns out that he has been using biological washing powders, which I know are implicated in skin disorders/allergies - so I have advised him to change that.

In the last week or so, though, his condition has worsened considerably.

As well as the itching/blisters, he is constantly thirsty and now has a really sore throat and is finding it hard to eat. Apparently he has thrush in his mouth.

These are symptoms of diabetes, which really concerns me. His GP - who presumably is aware of his diabetes, as well as his current skin condition - doesn't seem to be doing anything about it.

My brother spoke to the surgery yesterday, and they have given my dad something else to take, orally, and have said that if we have any other concerns that we should let them know and they will send the GP to see him.

As I am writing this from many miles away, I'm finding it hard to judge what my dad needs - but I'm very worried about him and what's the best thing for his treatment. He lives alone and has not really recovered since my mum died, some 6 years ago.

He's depressive anyway and, not surprisingly, is very very low at the moment - which is not going to help any recovery.

I happen to be working in Leeds next week, so will be going up to stay, and have extended my stay so I will be there from Monday until Thursday morning, so I can cook/wash/clean/shop for him - but I am very concerned about how we deal with this. From what I have read on the internet, bullous pemphigoid can take 5 years or so to cure.

Can anyone help/give me pointers/suggest anything?

What a nightmare BIWI.

I'm sure that you going to stay with him is a most likely to help him but here are a few things to check on

1. I imagine he has seen a dermatologist to make the diagnosis, usually by biopsy and so they should be monitoring his treatment which will be immunosuppression of some kind, steroids or something else.
   Is this the case? Are they monitoring him?
   They should also be able to help with supportive treatment such as antihistamines for itching and dressings etc

2. He is at risk of skin infection as both diabetic and BP, keep an eye out for this

3. If he is on steroids, plus he has a chronic concurrent illness, this is likely to cause his sugars to run high and so his diabetes will need closer monitoring, so again his GP may need to be involved with this, checking not getting DKA (diabetic ketoacidosis)-not so common in Type 2 DM or HONK commoner in non-insulin controlled diabetics like your dad (hyperosmolar non-ketotic hyperglycaemia)
   Check regular blood sugars, does he have a BM machine, and dipstick his urine to check that there are no ketones

4. All the above is likely to worsen his mental state, so GP needs again to keep an eye on, is he on ADs?

5. Is he able to look after himself whilst he is ill, does he need extra support from social services whilst he is unwell

6. I've found in elderly patients with concurrent illnesses such as DM, the dermatologist will often admit them (as one of their few inpatient patients) to get them sorted out. Not sure what bed situation is like in Leeds but dermatologists are normally very nice (as a result of not having a lot of acute admissions I think)

I will check back on this thread to see how things are going.

And as much as we hate prescribing sleeping tablets, might they help him at the moment in the short term to give him some respite at night?

I am not a medical person like Darrell but I sometimes get a vile skin condition that means I can't sleep from the itching and I take phenergan when it gets that bad.

I tell you BIWI, not being able to sleep at night due to itchy skin would drive anyone off their rocker. It is utterly depressing and horrible. You might find if he can start to get some sleep, it might make him feel a bit better. Nothing worse than fighting something horrid and feeling knackered at the same time.

Hope your visit goes ok and your dad gets the medical help he needs.

Phenergan good as well
Really helps with sleep
And when you have sleep, everything looks a lot brighter than how it looks shattered

Thrush means that his immunity is low already, any further suppression could make it worse, maybe they can admit him to check him thoroughly? Fungal infections are linked to Zn deficiency, is he eating OK?
I think it will be hard for him to cope on his own and it sounds like it might be a prolonged spell. Hope you & your brother can work someting out.

my mum had bullous pemphigoid.
She had lots of blisters all over her body. some about 4- 6 inches across.
she was on large doses of steroid until they found a level that controlled it, which was about 30 mg a day.

Your dad had got thrush due to the steroids. It is a common side effect. he will probably have a very sore bum too if you asked him. Having thrush in his mouth will make him want to drink lots. he needs treatment for the thrush before it becomes too bad and has other systemic problems.

Am very late checking in (have been on Mumsnet Ford day out), and have been to cricket club dinner - so not in the best position to reply now.

But I thank you so much for your replies and will read these tomorrow morning.

x

Thank you - this is really helpful and useful.

I think until I get there it's going to be hard to know the answers to all of these questions/issues.

His condition was analysed by a dermatologist/via biopsy, and I know he's taking steroids. I think he has been back to the GP a few times, and think the dosage may have been increased, but I'm not really sure about that.

He's not eating properly because it hurts to swallow, so this is one of the things I know I can help with. I was thinking I might get some soluble multivitamins for him to take as well - will see if I can also find a zinc supplement (I know you can get Vit C with zinc).

Re his diabetes, I know he tests daily - or he is at least supposed to - I'm worried that he might not be at the moment, as it's just another thing to worry about/have to think about.

I'm leaving first thing on Monday, so will be able to report back then, or to post any more questions here.

Hi BIWI. I am new to Mumsnet, I had to join when I saw your post. My Dad was diagnosed with BP yesterday, he is miserable and covered in blisters. I found a support group on patient UK and the lady was very helpful to talk to, she has been through it herself. Dad is going for a biopsy on Monday and then has to decide if he wants to try steroid treatment or antibiotics, there seem to be fors and againsts for both so its not an easy decision. I will keep you updated as I learn more, maybe we could share information? I was hoping to find some alternative/homeopathy treatment but cant seem to find anything on the net.
Hope you Dad is doing ok. Best wishes.

Thanks, puggirl - what a shame you've had to join MN under these circumstances!

Thanks for the tip re patient UK; I'll go and have a look at that.

Well a bit of good news

I spoke to my dad today, and he said that the GP had visited him yesterday. His steroids have been cut down, as apparently he was on a very high dose and the doctor things that this is causing the problems he's suffering from. Not sure what the dose was/is, but it's been cut down from 12 to 7 tablets (I think he said 7).

The itching is apparently coming under control, so he's able to sleep a lot better, and the thrush has gone.

He still has a really sore throat and is finding eating hard still, but he sounded much better overall.

All sounds good.
Normally the prednisolone comes in 5mg tablets so he has gone from 60mg to 35mg if he has gone from 12 to 7 per day.

Sounds like they are working, which is good, and I suspect that he will feel a lot better when he is not itching and hopefully sleeping.

Have a slightly more relaxing visit then previously expected next week

Thank you!

I am planning on doing lots of washing and cooking for him, as well as being generally bossy and taking charge.

because.....my mum was on 12 X5 mg tablets and she was eventually reduced to 6X 5mg tablets. If she dropped lower than that dose the blisters came back.
It is an immune problem and is very painful and itchy. They generally feel quite unwell too.

Well I'm back from an 'interesting' visit.

It was obvious just how ill he was when I arrived. I managed to fix a GP appointment on Wednesday, and he said we had to go straight to hospital.

Basically, the steroids have completely buggered up his diabetes, as well as causing gastritis. So he has had oral thrush (probably right through his gastro-intestinal tract) and severe indigestion, meaning that he's not been eating much. And what he has been eating has been stuff like ice-cream, Angel Delight - so far too sugary.

It has also become apparent that he's not been checking his glucose levels for some time either.

His glucose levels on admission were 21.7. When they re-checked a couple of hours later (having given him insulin injections) it had only falled to 21.2 - so the key focus was on getting those levels down. He stayed in hospital overnight, and is also there tonight.

They are looking to see if they can reduce the steroids further, as even on his lower dosage he's still suffering - but at least the bullous seems to be under control for the moment, and the itching has gone.

I'm not sure what's going to happen when he gets home, although the consultant was making noises about getting social services involved to see if they could help. The district nurse/diabetic nurse/team are also likely to be involved, as I think he's going to have to inject insulin for the time he's on the steroids.

The team at the hospital (Harrogate District) were fantastic and really kind, so I'm hoping he's in the right place. I just feel so frustrated being so many miles away. Thankfully my brother lives near to him, but he doesn't always seem to 'get' his health situation, which is also frustrating.

Do you think your dad will be OK living on his own after this? When my dad (at 86) ended up in hospital 3 yrs ago, he was too scared to return back home and I had to find a residential option then and there, as a daily help wouldn't have been enough.

He settled well and is still there and very well looked after, far better then he would have been on his own. Is a residential care a possible option for you?

It's something we're going to have to look into - I'm really worried about how quickly he's aged.

He certainly needs more help than he's getting at the moment, so I'm going to talk to Age Concern tomorrow and start the ball rolling investigating what our options are.

Meals-on-wheels for a start?
You know they say a lot of older people admitted to hospital are found to be malnourished, man on his own is in a far worse off then a woman in the same situation.
PS. My dad is also having derm issues at the mo, he has skin cancer and we have a hosp appt next week. The home has been able to arrange all hosp visits and tests needed sso far as I am quite far away, but will be there this time.

BIWI, oh my goodness, it sounds like you have both had a harrowing time.
At least all the medical problems are being sorted out all in one go now
But that still leaves you with all those difficult questions relating to social stuff and I think it may well be worth getting some of that stuff set up if he needs it whilst he is in hospital.
It is horrid when the balance of independence with parents shifts back towards to you
I hope he gets back on his feet again and let us know how it all goes

Quick update - he's still in hospital. Mainly, it seems, because they can't control his blood sugar. Today it was down to 3 first thing in the morning, so cue much scrabbling around to get him something sugary to eat. This evening it had shot up to 25! This despite insulin injections.

However, he rang me today, and he sounded much more like his usual self, which was very good.

He hasn't seen a doctor over the weekend, so hopefully he will tomorrow, and they can make a decision about what's happening.

Well, he's home. He came home yesterday, despite levels still not being stabilised. The diabetic nurse/team are supposed to be visiting him, and the hospital have contacted social services to see if they can give him some help at home - but my dad was vague about what that might be.

However, he sounded much better and was very pleased to be home, in the peace and quiet away from the ward!

Good news, freedom, I suppose
Hope he continues to feel better

Thanks, Darrell

He had a visit this morning from two nurses, re his diabetes/blood sugar levels, and apparently the district nurse will also be visiting twice a day, so that's great news.