Bullus Pemphigoid (or Linear IGA disease)

[Sugarlump]

Looking for anyone (in the world) who has succumbed to this, which starts with a goddawful rash that is driving me crazy.
Apparently as an auto-immune disease it IS linked to renal failure. I caught MSSA (hospital superbug) at christmas and this is
one of the things i developed.
Extensive skin rash with blisters, extremely itchy and keeps me awake at night. Mainly on my stomach thighs and underarm. Have steriod cream and 20mg Prednisolone daily
but not keeping it under control. I understand it is rare and am hoping somebody on here might have some experience of it...
Kill or cure please.....
    

[MooseMom]

Oh my God, this sounds horrible!  I am so sorry!  I know you said you'd been feeling poorly, but I had no idea it was as bad as this!

[Jean]

That sounds horrible. I have no experience in this, but wish you some relief and some peace.

[cariad]

So sorry to hear this. I hope someone can give you some useful advice. When shingles was doing my head in with the mad itching, I was prescribed atarax, (hydroxyzine). It definitely controlled the itching, but I could only take it at night because it would instantly put me to sleep. I would at least request something for that, so you don't have to suffer the effects of no sleep on top of everything else. Steroid creams offered no relief whatsoever. Hoping you find an answer.

[Sugarlump]

Oh my God, this sounds horrible!  I am so sorry!  I know you said you'd been feeling poorly, but I had no idea it was as bad as this!

The sad fact of long term renal disease is you do tend to pick up other related conditions along the way... and as skin conditions go, it's a horrible one.
Can take 4-5 years to get on top of it!!!! I nearly died when I read that.
I also managed to catch pericarditis this year (from fluid on the chest) too which was very scary.
Makes me sound like a hypochondriac I know, but my health issues seem to have swamped me this year.

I wish they would find a cure for my renal disease. Or the reason why I cannot maintain a transplant successfully...
Sorry to be so self-asorbed today...

    

[Sugarlump]

That sounds horrible. I have no experience in this, but wish you some relief and some peace.

Thank you Jean x

[Sugarlump]

So sorry to hear this. I hope someone can give you some useful advice. When shingles was doing my head in with the mad itching, I was prescribed atarax, (hydroxyzine). It definitely controlled the itching, but I could only take it at night because it would instantly put me to sleep. I would at least request something for that, so you don't have to suffer the effects of no sleep on top of everything else. Steroid creams offered no relief whatsoever. Hoping you find an answer.

I think to be instantly put to sleep at night would be good right now!
Might try my gp after the weekend and ask if I can have something like atarax (He is usually quite helpful)
 

[Sugarlump]

My "rash" for want of a better word, as it is the body attacking the skin and getting between the layers, is driving me crazy.
Worse not better.
40ng of steroids a day not touching it and I can't sleep, even with a sleeping tablet.
The steroids just make me cranky and hyper ... the cream I have gives minimal relief for about ten minutes.

It is particularly bad under my arms/elbows and groin/thighs. I hate wearing clothes over the top as it makes me sweat and rub.
I can't bear the blood pressure cuff to stay on my arm anymore either.

Makes my dialysis uncomfortable.
At home I can wear as little as possible and get some comfort from cool air...

God I hate it...it feels awful and looks awful.
Finding it difficult to cope right now. I know I am snappy with my carer and whingy at times... so difficult to stop myself.
I can't see an end to it. Apparently can take years to cure...

As if kidney failure wasn't enough. 

[Jean]

Doesn't it seem tho, that once you are in kidney failure, everything else does go wrong and the least little thing can have you climbing the walls. I came down with a fungus in one finger and athletes foot on both feet. Now, after 2 years, the finger is healed but is still painful to the touch and the feet look better, but still scaly, plus a broken nail, vertically!!! Not of that is end of the world stuff, but when you add it to kidney disease and this God-awful diet, it is just overwhelming. I am so grateful I have this site to come to.

[Sugarlump]

The Dermatologist took me off the steroids as they haven't made it any better.
And put me on Doxycycline (antibiotics) for 3 months...
Have been taking it less than 48 hours (2 tablets) and lo and behold I have a rash ON MY RASH!!!! all over my body. Can't tell if it's made my original rash fifty times worse or
it's a different rash but I would say I am allergic to it.
    
So 3am finds me sitting up, having a cup of tea and itching to death. Oh God 

[cariad]

You poor girl! I cannot even imagine! Yes, it does sound like you are allergic, that is my reaction to both penicillin and zithromax. Do they think you've been misdiagnosed because I cannot imagine what an antibiotic could do to help? It's an auto-immune disorder, so I'd have thought immunosuppresants would be the way to go. (But then, what do I know? I just skimmed a Wikipedia article on this. The doctor might actually know a smidge more about this....)

Are you taking Lasix by any chance? I happen to see that that is one medication known to possibly trigger the condition.

I truly hope they find an answer for you. Keeping a good thought for you, Sugar. It's all I can offer.... 

[Sugarlump]

Because high dose steroids didn't work (to suppress the immune reaction) he is trying antibiotics to reduce inflammation in the reaction.
Which has just made it fifty times worse.
They can use high dose  of immunosuppresants  but these sort of drugs have potent side effects (I had ritumaxab to try and save my failing transplant)
and it wasn't pleasant