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Bullous pemphigoid

Posted , 4 users are following.

lynne4ruth
lynne4ruth

Hi, i am not the patient, my name is lynne and myself and my husband jeff are the main carers for his 72 year old sister who lives with us. She is in the last stages of Alzheimer's, she also has dementia and all the breaking down of her body due to this. She is doubly incontinent and is totally bedridden and has carers call 4 times a day

All this my husband and i can deal with... but she has had Bullous pemphigoid now for 6 months or more, what a terrible horrible disease, i have read lots about it, ruth has seen doctors, dermatologists on several occasions, she has been given steriods in high doses, pills that made her have a stomach bleed and creams, the doctors will no longer prescribe more steriods because they are doing harm. we are at our wits end with this disease, the blisters are turning smelly, they are bursting, healing only to turn up again, her whole body is covered, personal, private places as well, her carers can not move her to change her, she is in so much pain, the liquid from inside the blisters is soaking the sheets, sticking to her body, there are so so many of them

any advise please

Thank you

Lynne

1 like, 3 replies

3 Replies

  • andrew46586
    andrew46586 lynne4ruth

    Posted

    I am so sorry. It may be time to consider IM morphine to relieve her pain. For example Cyclomorph 15 mg three times a day.
  • sheila77842
    sheila77842 lynne4ruth

    Posted

    Hi Lynne.Ruth i was told after seeing 4 doc countless biop that i have  this as well i went to my general doc 1st he perscribed pretizon 40 mi dailey so when i started cutting the dose bace to one time a day  omg the itch smell leekage was badddd so i have tryed every cream shot medicin bathwash everything known to man to get this undercontrol to no avail this is everwhere hands feet,underarm back legs u get the point i would sleep in white tee changing them several times anyways for me pretizone is what i am going with no itching  i wish you well ps i know  my spelling is not on target xo
  • lashonda23
    lashonda23 lynne4ruth

    Posted

    Hi , Lynne.... my mom was diagnosed with this disease about 3 weeks ago and almost immediately it was confirmed that it was BP. I'm thankful for the quick diagnosis but they seem to only be getting worse for her both physically and mentally. She is on 40mg of prednisone and that's been for 7 days. The blisters have formed almost everywhere imaginable minus a few spots on her back and lower legs . We thank God for that and for her faith in Christ. I'm wondering how long does the prednisone take to actually do something to the blisters . Any advice would be more than helpful. She's on day 7 and they seem to keep spreading. I have been praying and begging God for mercy and grace. I believe He is able. I'm hoping her healing comes sooner than later as I am not wanting her to breakdown spiritually. Her faith is strong but even for the strongest person it's a lot. Any suggestions advice would really help. Please also tell me what the remission phase is like. How long are they in remission for , and how soon do they come back after disappearing. ?

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