Patient Comments: Bullous Pemphigoid - Experience

Question:

Please describe your experience with bullous pemphigoid. Submit Your Comment

Comment from: Shacar, 75 or over Male (Caregiver) Published: July 24

It has been a year since my dad died from bullous pemphigoid. Unfortunately for dad, he was misdiagnosed from the word go. If any of you are on the drug Januvia please discuss with your provider, bullous pemphigoid is a side effect of this diabetic drug. For dad the lesions became infected and the steroid treatment shut his kidneys down.

Comment from: Anton, 55-64 Male (Caregiver) Published: June 05

My husband initially got sores that looked like impetigo but now look like bullous pemphigoid. I looked up his medicines and found that two of them trigger psoriasis, which my husband already suffered from. We're wondering if it's a severe case of psoriasis or this bullous. Either his doctor hasn't been clear with him, or my husband isn't being clear with me. I'm so confused and scared because his whole body looks awful.

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.

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.

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.

Comment from: Pam, 75 or over Female (Patient) Published: September 05

Bullous pemphigoid is terrible.

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.

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.

QUESTION

An average adult has about ________ square feet of skin. See Answer
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.

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.

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.

Comment from: MARY JANE BEACH, 55-64 (Patient) Published: May 21

I had this insane itching and blistering for about a month, and saw several doctors in that time, finally one doctor took a biopsy, so we have a definite diagnosis of bullous pemphigoid. However the treatment is not all that affective, and waking several times a night to reapply cream so I can sleep is not helping.

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.

Comment from: MikeE, 55-64 Male (Patient) Published: May 01

Symptoms started two years ago with a slight bubbling on the tip of my nose. It looked like a pimple, yet when touched, the outer layer of skin would slough off and a clear liquid would drip from the opening. It dried up after a week. Since then, I've gotten them on different parts of my body.

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