Patient Comments: Bullous Pemphigoid - Treatment

What kinds of treatment, including medication, did you receive for bullous pemphigoid?

Comment from: Deborah1961, 55-64 Female (Patient) Published: February 24

I was just definitely diagnosed with bullous pemphigoid yesterday and starting a regime of oral steroids, vitamin B3, and an antibiotic. I have been dealing with this for almost a year and it took the 3rd dermatologist to do a biopsy and find out exactly what I had. I am 100% covered (with just a few on face). Overnight I can get dozens of blisters. It hurts to wear clothing, walk, lay, shower, and I am having more trouble dealing with the constant pain than I am with the disfiguring marks. I am going to be 60 and this is by far the worst thing I have ever had to deal with.

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Comment from: Murphy, 55-64 Female (Patient) Published: January 03

I was recently diagnosed with bullous pemphigoid. I spent 4 days in the hospital. My course of treatment is topical steroid creams and oral prednisone. It is a difficult regime to say the least. I am hoping for a short bout of this terrible skin disease. I am very itchy which makes the blisters open. I will return to the dermatology department in about 3 weeks and hope that no more treatment will be necessary. However I am being realistic and know this will be a lifetime condition with remissions and flares. It is better for me to be prepared rather than be disappointed. I wish everyone with this terrible disease a speedy recovery.

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Comment from: Patria, 45-54 Female (Patient) Published: January 03

Around the age of approximately 38 I was diagnosed with bullous pemphigoid. I was treated with prednisolone for about 18 months. I was apparently one of the youngest patients the doctor had had. The dermatologist did not take me seriously at my first visit as the initial symptoms of itchiness had subsided due to cortisone ointment. After another 12 months I had developed blisters on the bottom of my fleet and was then diagnosed. I did not like taking steroids due to side effects but it seemed to get rid of itch and blisters; I was on steroids for about 18 months. The week I came off steroids my joints were very painful. I found glucosamine and fish oil helped and have been fine until now. Now 51 I am having very bad arthritic pain in my hips knees and ankles and wonder if the steroid treatment in the past has had an effect on my joints. I have gone from very a fit active person to virtually not being active at all. I was told some side effects were osteoporosis and hunch back but nothing was mentioned about arthritis.

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Comment from: CJ, 55-64 Female (Patient) Published: September 02

My treatment for bullous pemphigoid included IVIG which requires hospitalization as the treatment lasts 5 days, oral and topical steroids. I believe the IVIG treatments were the reason I have improved. I'm not out of the woods but I remain positive that this nightmare will end. Good luck to every one of you and hoping you have a speedy recovery. It will get better over time. My thoughts are with each and every one of you.

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Comment from: mj, 25-34 Female (Caregiver) Published: April 14

My dad has suffering for almost 5 months. We haven't thought that it is bullous pemphigoid and we went to his dermatologist and he says that he needs to take some medicine to eat and put clobetasol ointment, and soap. For now the itching as stopped. I hope he will get better now! We will go to his dermatologist next week for his biopsy.

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