Patient Comments: Bullous Pemphigoid - Experience

Please describe your experience with bullous pemphigoid.

Comment from: bitterprofit, 55-64 Male (Patient) Published: October 19

I first was diagnosed with bullous pemphigoid over 12 years ago. I was 45 at the time and in good health. Luckily, I was diagnosed early (within 2 weeks of first outbreak). I went on massive doses of prednisone for a couple weeks and it stopped it almost immediately. But the complications were severe. So, when I finally cleared up, I went on azathioprine. I weaned off of that and went 5 years without symptoms. Since then I have had 3 or 4 outbreaks. I am having one now. It is the first outbreak in 3 years. It came on strong and within a day I knew what it was. I was down to a half pill of azathioprine per day. Now I am back on the high prednisone dosage. It has stopped the incessant itching. But back to side effects. I am a type 2 diabetic, so the prednisone plays havoc with my blood sugar. I am very frustrated that this disease keeps coming back, but grateful that there is a medication regiment to treat it. Or I swear the itching would make me go insane.

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Comment from: concernedmom, 25-34 Male (Caregiver) Published: July 18

My son was just diagnosed with bullous pemphigoid. He has been taking black seed oil pills for the last month. He has felt the blisters coming on but we believe the black seed oil has been suppressing them. The autoimmune specialist he saw told him to continue the black seed oil pills but take 4 per day instead of 2. Plus my son will have to give himself a shot once a week for the rest of his life. Better than having the blisters.

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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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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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