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Carers UK Forum • Bullous Pemphigoid
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Bullous Pemphigoid

Posted: Mon Mar 23, 2009 4:28 pm
by pawsforthought
My OH started with a skin complaint at the latter end of January, saw GP who diagnosed scabies,thought it had been picked up from the hospital when he was in in December, things have been gradually getting worse and worse,saw GP again last week,who admitted that he did not know what it is,have been to see a Consultant Dermatologist this morning who has confirmed that it is Bullous Pemphigoid,have to take OH to Hospital in the morning for skin biopsy,OH has been started on steriod tablets and cream.
The skin comes up in blotches,then blisters,when the blisters burst they are sore and then form scabs,and the skin itches like mad,so neither of us are getting any sleep hardly, on Wednesday a District Nurse is coming and will be coming every other day to burst the blisters.
I gather it is a very rare complaint,I have looked on the Internet for information and have found that it is a auto-immune system problem.
I wondered if anyone on the forum had any experience of this condition.,this,one top of all his other problems is just about the last straw

I haven't had any experiences

Posted: Wed Mar 25, 2009 10:59 am
by Caring_Mind
I haven't had any experiences of this, pawsforthought, but am sending (((((hugs))))) xx

Thank you Caring-mind,this is a

Posted: Wed Mar 25, 2009 2:35 pm
by pawsforthought
Thank you Caring-mind,this is a truly horrible skin condition,very painful when the blisters have burst,and the itching drives OH mad,worst at night when he has gone to bed and got warm, from the info I have found on the Internet it only affects people over 70 years of age.

It sounds a terrible disease!

Posted: Wed Mar 25, 2009 7:48 pm
by Caring_Mind
It sounds a terrible disease! I do hope that you can get some support from someone. Does your GP not have any information on support groups?
Wishing you well and don't forget to take care of yourself, too xx

oh my word, thats terrible

Posted: Wed Mar 25, 2009 8:28 pm
by pixienubbins
oh my word, thats terrible I do hope he gets the help needed and we are always here to support you!!! good luck with the skin biopsy!

Crikey, Paws. Take good care

Posted: Thu Mar 26, 2009 9:39 am
by NanaNana
Crikey, Paws. Take good care now. Love and hugs to you both, Fran xxx

Thank you so much for

Posted: Thu Mar 26, 2009 7:15 pm
by pawsforthought
Thank you so much for your support,it means a lot,GP. does not have any info,and there does not seem to be a support group as such,on the Internet.
A Sister and Nurse came this morning and dealt with the blisters,and two are coming every day until the blisters are finished,it is a seroius condition,quite frightening when you read about it on the web site,I asked the Nurse this morning how long it was likely to last and she just answered it will go on for quite a while,but,we will get him right in the end,looking on the web site, I see they give a time span of 1-5 years,I think once the steroid tablets kick in ,hopefully his skin will improve but i gather he will have to continue on a low dosage of the tablets for a long time Image

I do hope that this

Posted: Thu Mar 26, 2009 9:18 pm
by Caring_Mind
I do hope that this terrible condition does get better for him. Sending both love and hugs xx

there does not seem to

Posted: Thu Mar 26, 2009 9:44 pm
by rosemary
there does not seem to be a support group as such,on the Internet.
A(
Not sure if you have seen this

Scroll down on that link to.....Further help and information The web link does not work but there is a phone number on there.They may be able to point you in the right direction.

The 2nd link is for an International foundation.Under their Community section which is free to register for, it says...read or post in topic forums filled with information and advice from other patients and caregivers

Hope of some use.

x x

Rosemary,thank you that is very

Posted: Thu Mar 26, 2009 10:00 pm
by pawsforthought
Rosemary,thank you that is very helpful,I had not seen that site x