Patient Comments: Bullous Pemphigoid - Experience

Please describe your experience with bullous pemphigoid.

Comment from: Victor, 75 or over Male (Patient) Published: February 05

After visiting 3 skin specialists I was finally diagnosed with bullous pemphigoid. I am taking dapsone and another anti-itching drug in the evening. Right now I have about 10 blisters in the chest. I managed this problem by rupturing the blister as early as possible and pulling out a small white spine that is usually at the center. I believe that spine feeds the blister. I also use a medicated cream that I buy at a dollar store and cover with it the legs and the chest. This seems to relieve the itching. I also developed one or two blisters in my mouth and one relatively large one in the throat that was making it difficult to swallow. The laryngologist finally decided to agree with my skin specialist who felt this was also bullous pemphigoid. I read that soap also helps but I felt that if I bathe often the layer of cream will disappear and make the skin more vulnerable. I would like to hear other opinions on this. The throat thing is scary, but it looks like for now it is going away.

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Comment from: Fatboy57, 55-64 Male (Caregiver) Published: August 06

My husband was diagnosed almost a year ago with bullous pemphigoid after being through tests and drugs. The biopsy showed what it was. His life is miserable. He was very healthy and active until this disease got him. He is on steroids (which are starting to affect his eye sight) and triamcinolone acetonide cream which he applies to his sores several times a day. He can't be in the sun, water, can't ride in a vehicle. So basically he is a hermit. I have to modify his clothes so they don't rub his skin. He has wanted to give up living so many times because of this disease. He just takes 1 day at a time.

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Comment from: JackD, 75 or over Male (Patient) Published: March 04

After 3 month stay in New Zealand I was diagnosed with bullous pemphigoid. Most of body is red and very itchy. I wore taped on possum fur gloves to protect my body from my scratching. I was treated with high dose cortisone cream first for 1 hour entire body, and then nonionic body cream over entire body. I had light blistering in the beginning. I went into remission for 2 years and it just came back after taking antibiotic cefaclor 500 3 times day for foot infection. I will stop the antibiotics now since the infection is cured and expect the rash will stop itching and will cure.

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Comment from: Sue, 55-64 Female (Patient) Published: November 07

I had severe bullous pemphigoid for approximately 8 years. I was given 60mg oral steroids for about four years gradually decreasing over the next few years. I felt extremely ill both physically and mentally and worked full time. After having the illness for approximately one year it became very difficult to work and I had to take early retirement. One symptom I had was severe pains in my joints which left me virtually unable to walk. This coupled with weight gain from the steroids has left me with permanent disablement with severe osteoarthritis in knees and hips. I still get the illness if I take extended courses of antibiotics for my asthma.

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Comment from: Patridia, 65-74 Female (Patient) Published: September 11

Having been diagnosed with bullous pemphigoid recently, although treated and OK now, I have to reflect on my history and its onset. About 40 years ago, I went to the doctors to be treated for insect bites. The receptionist told me not to bother the doctor with those, and go away and get some Piriton from a chemist. I did and it cured my problem. Over the years, I had several bad attacks with bites, particularly one in Egypt. But it eventually went away when I treated myself. However, I did suffer on return the home from the pharaoh's revenge and was in bed for three days laid flat out -- certainly a first for me. Then one evening on a holiday on the Rhine we were dropped by a coach party alongside the river, which was swarming in insects, to watch a delayed fireworks display. Unfortunately, we were there three hours because of the delayed start. A day later, my arms and legs began to itch and blisters formed. I was diagnosed with bullous pemphigoid. My husband is convinced that there must have been a secondary reason; that evening brought the pemphigoid blisters to a head as they were only in parts where insects could reach (for example, my legs, arms, and feet) as I wore sandals that night. However, the doctors and a specialist say different.

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Comment from: Nancy d, 65-74 Female (Patient) Published: January 12

I have been diagnosed with bullous pemphigoid about 6 months back. Nerves make the flair ups worse.

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Bullous Pemphigoid - Treatment Question: What kinds of treatment, including medication, did you receive for bullous pemphigoid?
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