Patient Comments: Bullous Pemphigoid - Experience

Please describe your experience with bullous pemphigoid.

Comment from: Raingirl155, 75 or over Female (Patient) Published: December 31

I have fibromyalgia and about 3 months ago had pneumonia and asthma. Soon after I began developing hives that itched terribly. Soon enough they began opening to sores and bleeding. The itching from bullous pemphigoid is still ongoing and horrible. I've had my third shot of methotrexate but the itching is still as bad. My whole body is scarred and the open sores dry up and then with the itching and scratching tend to open up again and it is a continuous repeating of the scratching and opening. I have diabetes 2 and my blood sugar has gone terribly high and I had to go on insulin which keeps increasing according to the A1C. My head itches terribly. I just recently found one sore on my left jaw.

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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: 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?
Bullous Pemphigoid - Symptoms Question: What symptoms do you experience with bullous pemphigoid? How do they affect your daily life?

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